Leo's Battle with Pontine Glioma

Leo's Fund Approved by the IRS

2007-04-20T13:04:00.000-06:00

Our application for Leo's Fund to be granted 501(c)(3) status as a charitable organization has been approved by the IRS. This means that all contributions to The Fund can be deducted from federal taxes. A copy of the approval letter, along with the Federal Tax ID, etc., can be found here. Answers to questions around what to do with the funds (see below) are still pending...

Leo's Fund

2006-11-22T15:23:00.000-06:00

Background

The on-line cancer community, including treatment and informational web sites, blogs, etc. is gigantic. Searching for information is simple, but knowing whom to trust is difficult.
Medical professionals, including doctors, nurses, and others genuinely seem to want to help, but no one has taken a true leadership position to guide diagnosis, research, treatment, follow-up, etc.
The medical industry, including companies that provide drugs, equipment, and other items for diagnosis and treatment, by nature, have to look at the commercial aspect of their products and services.
Diagnosis of Diffuse Intrinsic Pontine Glioma is usually considered terminal by the medical community.

By the Numbers

Google finds almost 300 Million sites when searching for "cancer." "Brain tumor" turns-up almost 2.5 Million sites.
Yahoo! finds almost 200 Million sites when serching for "cancer." "Brain tumor" turns-up over 2.5 Million sites.
There are almost 5,000 treatment trials, as reported by the National Cancer Institute.

Even all the money in the world can't buy a cure for Diffuse Intrinsic Pontine Glioma (DIPG)...

Communication and coordination are issues:

There is too much out there (see By the Numbers).
Parents don't know whom to trust. They trust their local oncologist and are afraid and/or fear quacks and "miracles" out there taking advantage.
Information is frequently out-of-date.
Trials always take a very long time, but usually do not (?can not?) post intermediate results (i.e. prior to the completion of the study).
Other treatments that shouldn't hurt or interfere with primary treatments -- as shown by published, peer reviewed documentation.
All of the above combined with other factors, such as parents wanting to memorialize their child, make the DIPG "community" completely uncoordinated. This leads to a fragmented bunch of tiny, local foundations that can't really raise too much money and eventually wither away after a few years.

Giving families with children fighting this battle a few hundred, or even thousand, dollars may very briefly alleviate only some of the stress associated with the diagnosis, prognosis, and treatment. This will not help much in the way of preventing or treating children diagnosed in the future.
Giving money to medical/clinical research is partly a matter of focus. Spreading the funds too thin would probably not motivate researchers enough to work faster to find a cure. Besides, wading through the FDA morass takes a lot of time. Does this mean to fund research outside the US? Does it mean to (help) lobby the FDA to fast-track all cancer treatments and trials? Further, funding research that's headed in the wrong direction is a waste, but there's no way to know a priori who's going down the right path.
Giving money to epidemiological research? Two things should be noted. First, there is no long-term treatment and, arguably, nothing is even on the horizon. Even the short-term treatments only prolong life -- but not for long and frequently with minimal "quality of life." Of course there are varying degrees and definitions of "success." Second, because of the lack of treatment, maybe focus should shift to prevention. There has been some research around causes of brain tumors. High correlations have been shown between N-nitroso compounds ingested by pregnant or nursing women and pediatric brain tumors, but of course not causality. Maybe this is a place to fund more research?
What about a Brain Tumors for Dummies-type book, which oncologists ought to give out when they make a (new) diagnosis. Fund the writing, reviewing, publishing, and distribution of the book and, of course, a web site for updates. There is such a book called, "Childhood Brain & Spinal Cord Tumors : A Guide for Families , Friends & Caregivers." Also, Paul Zeltzer has written several books on this topic.
What about sponsoring a contest? Maybe an annual contest, like a Nobel Prize for Brain Tumors (or Cancer in general), which gives money to the most promising research? Or an "ultimate" contest, like giving a gigantic amount of money to someone that can reliably, statistically, show that they've cured even one type of brain or central nervous system tumor, regardless which one? Again, this would take a very long time and we'd need to define what "cured" means. Today the usual definition is 5 years without recurrence -- what if it recurs in year 6, or at 5 years and 3 months? Would 10 years be better? 20? Unless this was at least hundreds of millions of dollars, big pharma would probably be uninterested, so the focus would be on start-ups, universities, etc.
What about funding educational and awareness programs about non-traditional treatments and prevention eventually? In small part, this would be to make the general public aware of the prognosis of this horror, although most people understand that "brain tumor" = "death sentence" (in most cases). The larger part would be to campaign for medical schools to offer courses in complementary treatments, although some have already started. Also, would students really care that much? They just need to pass the classes to graduate. They do their learning on-the-job as interns, residents, and fellows. It would also be reinforcement in non-traditional medical schools, including osteopathic, naturopathic, homeopathic, chiropractic, etc., which may already offer complementary treatments.
Some portion of the funds will go to families that have decided on Dr. Burzynski's antineoplastons treatment. We know it works. For Leo, after only about 40-something days on the treatment, the first MRI showed approximatey 6% reduction without traditional treatment! In fact, as a result of just 2 radiation treatments, the first MRI showed tumor enhancement, while the following MRI showed reduced enhancement. Enhancement is usually not a good thing and had Leo not gotten those 2 doses, it would have meant a lot less worrying and wondering.
Further, some portion of the funds should go to starting another trial of antineoplastons outside of the Burzynski Clinic in Houston. Although this has been tried before, funds will need to be made available to validate and audit that anyone working outside of the Burzynski Clinic follows the protocol to the letter.
In addition, although this wouldn't directly benefit children, maybe someone should do research on the theory that antineoplastons are species-specific. Since so many in vivo experiments are done using rats and mice, maybe someone should try to isolate their antineoplastons, just like Burzynski isolated human ones.
What else?

Fall Season...

2006-11-07T22:15:00.000-06:00

For most people, it's the fall or autumn season. Unfortunately for us and so many others, it's death season. Leo passed away 16 days ago, on Monday October 23, 2006. He always was the leader of the pack, we just wish he wasn't in this one:

David Tice, 26 years old: Tuesday October 24, 2006, died (DIPG).
Paul Leverett, 47 years old: Saturday, October 28, 2006, died (necrosis from radiation for GBM).
Hannah Hatlen, 5 years old: Tuesday October 31, 2006, died (brain stem glioma).
Katya Polishchuk, 5 years old: Wednesday, November 1, 2006, died (DIPG).

I'm sure I missed others and I'm not purposely omitting anyone, but this isn't exactly the type of list where someone would actually want to be included.

Reading about each of these deaths, particularly the young ones', was like reliving Leo's passing. Leo, Hannah, and Katya seemed to have similar endings to similarly short, sweet, innocent lives. Leo's passing was our own personal holocaust.

Dear Leo

2006-11-01T20:07:00.000-06:00

It's been 10 days since you were taken from us and things have not gotten much easier. If I were to describe how much we miss you, I would certainly be understating it. Anna and Nina are helping us a lot with trying to go on. They know you aren't here with us anymore, but keep us going. Maybe they know much more than anyone even imagines, meaning they know you're alright, so they aren't sad. In fact, when they see either of us sad they tell us to cheer up. In the evening of the day you took your last breath here, I told the girls that you no longer had any "owies." Since then, they don't ask where you are, which they always did when you in the hospital, and they don't say you have any owies. They must know more than we; they know you are in a better place now.

So many people came to say goodbye at your funeral last Wednesday. It was standing room only! Cantor Rob led a beautiul service and when he chanted the Psalms, it was as if King David, himself, was there to guide you through the valley of the shadow of death. At home, lots of people came from all over, brought food, and helped us mourn as well as celebrate your short life. After seven days, your shiva candle burnt-out today, so shiva is over. We went to the cemetery today with your Grandparents, my Aunt and Uncle, and Cousin Irina. We all miss you so very much...

Leo, you probably already know, but our on-line friends from Vancouver lost their precious daughter, Hannah, yesterday to the same monster as you. Show her the ropes; she seems like a really sweet girl. Yesterday was also Halloween. It was very sad without you. Remember last year? You were Batman, Anna was a spider, and Nina was a pumpkin. This year, Anna and Nina were Care Bears. Regardless, everyone feels your absence, even every room in our house seems to miss you.

We love you, Leo. Always have and always will.

A Sign?

2006-10-27T23:11:00.000-06:00

This is an old picture of Leo, obviously, with only 6 or 8 teeth, but I couldn't help myself. It's so hard to believe that he's gone. No words can explain the pain. We've been sitting shiva since his funeral Wednesday and it's nice to have people here, taking our minds off of everything. But in a way that makes us feel guilty that we're taking a break from mourning and not thinking of Leo. It also concentrates the grief after everyone's gone until we lose consciousness for the night.

Today, I may have taken the last step before going insane. I honestly believe Leo sent me a sign that he's alright. This afternoon I was looking at Leo's pictures, talking to him, begging for a sign that he's ok. Right at that moment, my cell phone rang just once so I didn't get to it in time. But it showed who called: Leo. My friend Leo, that is. In fact, this is the second time this has happened, with the first time being a call to Marina's cell phone a few nights ago, also right after our pleas for a sign. Crazy? Maybe. Probably. So what.

We Knew this Would be Difficult, but had No Idea

2006-10-24T15:07:00.000-06:00

We cry ourselves to sleep at night, hoping the pain will go away, even temporarily. But it won't. The colors all seem to have disappeared and everything is now a shade of gray. There doesn't seem to be sweet or salty food anymore. It's all bland, even what we used to like. The world is filled with so much "stuff" but just so empty for us now, especially that big gaping hole in our chests. How can this be? How can everything just change overnight? We've heard and dreamt-up so many explanations, but just like the cancer that took Leo's life, we can't figure it out. Almost simultaneously Marina and I told each other recently that we're not afraid of death anymore. We are not ready yet because we have two absolutely precious, gorgeous, brilliant little girls, Anna and Nina, but if death comes tomorrow we have no fear.

Leo, the only comfort we have is that you are no longer suffering. Or maybe it's just our selfishness that we no longer have to see and hear your suffering. Your last weeks were filled with nothing but pain and misery. So much senseless torment, thank G-d you were taken quickly. At the same time, too quickly! You were only 3 and a half. Was your work here really done? Did you really achieve a lifetime's worth of accomplishments in that short a time? You are a little ball of energy, but even that sounds too fast, even for you, Leo. We just wish we could have a sign that you're ok now. Let your Grandparents know that you're all right, too. They miss you terribly and we know how much you love them.

During your last hours, I asked your Grandmothers, Shura and Bella, to tell you who was waiting for you so you would know whom to expect. Their names, how they looked, how they sounded, and anything else to help you find your way. At the same time, I think we all prayed that your Great Aunt, Great Grandmothers, Great Grandfathers, and everyone else was ready – you are not a "simple" boy! They needed to find big shovels and plenty of dirt where you could dig to your heart's content; lots of trucks, bulldozers, excavators, and skid steers to make it even more fun; and all your favorite foods. You're a little guy, after all, so they need to keep you safe and warm and comfortable until we get there, which hopefully will be a while still...

The worst time of day is when Anna and Nina go to bed, at about 8 or 8:30pm. Our house becomes so dark and quiet and empty. This was always our time with you. Another few minutes until you went to bed. Maybe just another episode of Bob the Builder or Thomas or that goofy Monster Truck video you like so much. And a bottle of milk; you love milk. Now, Mom and I collapse into bed, trying to relive the good memories. We talk to you and try to comfort each other, but the pain remains.

We love you Leo, always have – from your first breath until your last – and always will. Even though you aren't here with us anymore, we know that you're in a better place because nothing could be worse than what you went through down here. How sorry we are that we couldn't do more. We tried really hard; we did, but just couldn't save you. Please forgive us.

More importantly, we hope you continue to watch over Anna and Nina, just like when you were here. If Mom decides to put drops in Nina's nose, go ahead, tell her to stop, and pull her arm away, just like you always did. If I decide to punish Anna for getting undressed for no reason, tell me to stop. I will. We are far from perfect and need your advice. We need your spirit and never ending energy, your strength and your charm and smile.

Thank you, Leo, for having been in our lives, even for such a short time. We hope we were good parents, because you are a great son. Even in death, you are so full of life. We love you forever.

10/23: Leo Isaac Dubinsky, 2/11/03 - 10/23/06

2006-10-23T05:03:00.000-06:00

At 3:15am on October 23, 2006, Leo's pain, misery, and suffering finally ended. He was surrounded by his Parents, Grandparents Shura, Bella, Leonid, and Michael, Uncle Boris, Aunt Lana, Cousin Shana, Cousin Irene, and Gala.

Funeral Information:

Wednesday, October 25, 2006 at 11:00am
Ridgewood Cemetary Mausoleum
9900 Milwaukee Avenue (just south of Central)
Des Plaines, IL

10/20: No Changes

2006-10-20T19:56:00.000-06:00

Leo's general condition hasn't changed much, although he was in a lot of pain and/or discomfort last night, so another sleepless night for everyone. Today Dr. Goldman, the oncologist from Children's Memorial Hospital, called. The bottom line, he said, is that even though he can't offer much in the way of a treatment that's known to work, we should restart antineoplastons as soon as possible. Since Leo has the NG tube, giving him addition liquid/water shouldn't be an issue. In fact, it may help his constipation. And if that doesn't work, we can always increase the IV fluids he's been getting (yes, even after coming home).

So after I came home tonight I took out the binder from the Burzynski Clinic and turned to the first page of Leo's treatment, July 19. We'll probably skip the 5mL dose and just go straight to the 15mL of antineoplaston A10. I think the AS2-1 started at 2.5mL. Neither of those doses will make him overly thirsty and I just remembered that the AS2-1 helped him sleep. Tomorrow we'll prepare the IV bags and pump and get going. Time to get back on the road to recovery.

10/19: If Only They Listened

2006-10-19T20:34:00.000-06:00

Tuesday evening, after we brought Leo home and everyone had gone for the night, Leo had another grunting and struggling episode. He spit-up a little and started breathing very quickly again. I decided to do what I saw nurse Sandy do in the Intensive Care Unit -- to connect a gigantic 60mL syringe to Leo's NG tube and suck-out whatever was there. I sucked-out about 150mL of completely undigested formula that was just sitting in his stomach! At the 60mL per hour at which his feeding pump was working, that's 2 and a half hours of food! As soon as we saw little else coming-out, we noticed that Leo's breathing became normal and he stopped struggling.

We called our new palliative care nurse Marissa at about 11pm, who said she would call Dr. Battle, who called us at midnight. She suggested getting PediaLite for the night and then reevaluating in the morning. That didn't help and we just disconnected everything and Leo actually slept a few hours (as did we).

When Leo was born, he had a problem with regular formulas: they constipated him terribly. We tried everything and eventually found a formula called Alimentum, which is basically pre-digested. Once we started feeding this to him a month or so after he was born, all became well. He stayed on this formula for the first year or so and never had any GI issues. Afterwards, he was on regular food, milk (which he could drink by the gallon it seemed), etc., but for some reason just couldn't tolerate regular formula. This is what I told those GI doctors on Tuesday, October 3 and what Marina told Dr. Battle Wednesday morning. Dr. Battle, unlike Drs. Hernandez, Berman, Garcia, or Guna, listened. She immediately wrote an order for predigested formula for 3 year-olds (not Alimentum, but something similar).

While Marina was talking to Dr. Battle, I was at work and tried calling one of these GI "specialists." I spoke to someone who took a message. After an hour or so I got a voicemail from a nurse Sharon in some GI department (not necessary Luterhan General, possibly Loyola for some reason). The message was being relayed on behalf of Dr. Berman telling me that if Leo had any problems, to take him to the emergency room! What incredible medical advice! This fueled my anger and I called the Director of Operations of the Women's and Children's Hospital at Lutheran General, Marilyn Isles. She didn't know how she could help and didn't offer any advice other than to listen to the doctors (ha ha), but was nice and listened to me. I then left a voicemail for the Director of Clinical Excellence at Lutheran General, telling her how angry I was (and still am) at the "treatment" and "care" Leo had gotten in the hospital. She has a nice sounding title, but hasn't even had the decency to return my call.

Anyway, the predigested formula arrived Wednesday evening and worked like a charm! No gas, no cramps, no bloating, no struggling, no pain! He even pooped three times at night, which Marina and I were more than happy to clean-up. If those doctors had just listened to us in the first place, maybe Leo wouldn't have had to have spent an additional 2 weeks in that foresaken hospital in pain, being poked, prodded, and pumped full of all sorts of drugs to undo the negligent damage that had been done! This formula, though, is only one component of a terribly complex situation.

Yes, I am extremely angry and upset -- who wouldn't be!? They made him suffer and delayed his treatment. Unfortunately there's nothing we can do about it now, other never going to Lutheran General for help again. The only thing we can and will do is continue to help Leo get out of this state and get some strength back to restart treatment.

10/17: Leo is Home After 17 Days in the Hospital

2006-10-17T19:50:00.000-06:00

Leo was in the hospital this time for 17 days, but is finally home. He has the NG tube and yesterday evening OptionCare delivered 2 cases of formula, an IV pole, a pump for the feedings, and other supplies. Today Seasons Hospice and Palliative delivered almost all the medications. Home nurse Candy, the one we've had since Houston, came over just before Leo arrived and stayed with us for almost 3 hours.

Leo's general condition hasn't changed much, which is exactly why we wanted him home (i.e. it was not getting any better at the hospital). It's scary to have him here, without all the beeping monitors, and we're extremely anxious because the number of medicines has doubled since before his hospitalization. He's still on:

Decadron (2mg 3 times daily)
Nystatin (1mL 4 times daily)
The pepcid/prevacid was switched for protonix (10mg 2 times daily).

In addition, Leo now has to take:

Mylicon/simethicone (40mg 4 times daily) for gas pain
Levsin (0.125mg 2 times daily) as an anti-spasmodic for the GI issues
Miralax (8g 1 time a day) as a laxative/stool softener

With the NG tube, of course, he has formula feedings consisting of Peptamen Junior continuously at 60mL (that's about 2oz) per hour.

I spoke with Dr. Szymkowski from Houston today and in a few days we are going to restart Leo on antineoplastons. We want Leo to settle down and realize that he's back home and no one is going to poke or prod him (at least no one he doesn't already know). The antineoplastons will restart at a very low dose, nowhere near the max, but unfortunately his system needs to get readjusted -- to everything.

10/15: Hospital Days 13, 14, and 15

2006-10-15T19:54:00.000-06:00

In the afternoon of Friday, October 13 (Happy Birthday to my big brother Boris), I spoke to Dr. Goldman, the hemoc at Children's, who originally diagnosed Leo. Dr. Goodell, and his partner Dr. Kwon, both hemocs at Lutheran General, where Leo has now been for 15 days, have refused to even stop by to consult with us about Leo's condition. Dr. Goldman, though, agreed to oversee Leo and said he understood that we're trying to do everything possible. Even though he may not fully agree with, understand, or trust antineoplastons, at least Dr. Goldman seems willing to help. He said to get the ball rolling with another MRI as soon as possible.

That same Friday, things got worse for Leo. At this point, Leo's entire digestive tract had been cleaned out and his NG tube feeds were started very slowly: 10mL -- that's less than a tablespoon -- of 50% diluted formula per hour. He started having waves of pain, during which he moaned and grunted and clenched his fists so hard that his little hands almost started to bleed. For this, he got two rolls of gauze to squeeze so as not to hurt himself. None of us could even imagine the pain he was feeling, but just listening to it hour after hour was torture. These waves lasted several minutes and then went away for an hour or two, but always came back. If they caught it in time, Leo would get Tylenol, or sometimes Ativan if it got worse. Saturday morning, at exactly 4am, the wavelength decreased to every few minutes. So for 5-10 minutes he tensed and clenched and his heart rate jump to over 150 beats per minute, and for a few minutes not. This is how Leo's weekend started.

Saturday morning we found out that an MRI had been scheduled for 2pm, so Leo's miniscule feedings would have to be discontinued at 10am, since he would need to be sedated. The lack of even this tiniest bit of food seemed to make his waves of pain worse. We also found out that a pain management specialist would come at about 4pm and we were looking forward to this. Then a few doctors came.

Dr. Garcia, who is one of the attendings (and I think director) of the Pediatric Intensive Care Unit, came since Leo in a half-way house between ICU and the "regular" floor. We were very concerned about Leo's pain and asked for something to help him. He said he had consulted with Dr. Berman, a GI attending, who said that Leo shouldn't have anything much stronger or containing narcotics, barbituates, or ibuprofen-like medicines since they can cause more constipation, gas, and GI bleeding -- all the side-effects we're trying to avoid. Tylenol and Ativan were about it, but both weren't very effective and could only be given at 4 and 6 hour intervals, respectively. He said he would return later or tomorrow.

Twenty minutes after the MRI was supposed to have started, at 2:20pm, nurse Kathy came in telling us that the anesthesiologist said that now Leo had to be 6 hours without food, not 4. Why? Don't know because he hung-up on her as she was asking. We had no choice since it's Saturday and he's the only pediatric anesthesiologist available.

At 2:50pm, while Leo should have been in the MRI, Dr. Hernandez came. He's the GI attending that saw Leo on the first day of hospitalization, October 1. We discussed the waves of pain and he said that a stronger medicine can and should be given. But if something sometimes causes constipation, then to give a mild laxative or stool softener to prevent it. This made sense, but he couldn't really make a recommendation until the pain management guy came at 4pm. He promised to return tomorrow at about 10 or 11am.

4pm came and went. No MRI and no pain management. Even transport came for the MRI and just as we were going to move Leo, someone called and said that something more important came-up than a starving 3 year-old with a brain tumor and intolerable pain.

At about 5:30pm, Dr. Yuri Aranov, who had given Leo anesthesia at the last MRI on September 26 came. Turns out the anesthesiologists are also the pain people. Makes sense. He told it the way he saw it. This included Leo possibly not being in pain, that these waves may be caused by psychosis brought-on by decadron. Or maybe Leo really was in pain. But the sole antispasmodic medicine tried the night before didn't help, so he must not be having spasms of the GI tract. The bottom line was that Leo may be in pain or may not be in pain. Since Leo couldn't tell us exactly what was going on, we shouldn't just trust what we think we see and hear. But they were still going to try to find a medicine to help that wouldn't constipate Leo (more), wouldn't cause (more) gas, and wouldn't cause (more) GI bleeding. Dr. Aranov was with us for a while and went to consult with Dr. Hernandez before returning and telling us he would continue researching.

I don't remember the exact time Leo was finally taken to the MRI, but I think it was at about 7:30pm. So he was starved for about 9.5 hours and no one knew why, other than probably more important patients, obviously. Anyway, I went with Leo to the bowels of the hospital and wound-up in a trailer that now holds Lutheran General's inpatient MRI equipment. At about 8pm, while Leo was stretched-out on a table besides the tube of the MRI machine, I started asking why it looked as if it wasn't even going to happen. The following floored me and I seriously considered taking Leo back to his room.

There were 2 guys running the MRI equipment with a pump for medicine (anesthesia). There was 1 anesthesiologist with a ginormous syringe filled with white anesthesia. There was 1 nurse that came with us just to oversee Leo. What was missing? Someone (a special nurse) who knew how to program the pump to deliver the anesthesia! Would I have been wrong to lose my cool at this point!? Probably not, but I realized it would accomplish nothing. So after playing with the pump, the anesthesiologist seemed to figure-out how it worked, while my blood pressure nearly popped-off my head wondering if he was about to administer a lethal dose, which he assured me he wouldn't. Leo's MRI started at about 9pm and ended at about 9:30, while I watched fuzzy images appear on the operator's monitor. Leo was returned to his room asleep (he did wake-up eventually). Shortly after, the diluted formula started again at 10mL per hour.

At exactly midnight the room phone rang. It was Dr. Kroin telling Marina the results of the "wet read" of the MRI. There were no measurements. There was no comparison to the previous MRI just 3 weeks ago. At midnight, she told Marina that Leo had hydrocephalus. Marina flat-out didn't believe her, but I was in pieces...

Sunday morning started with the usual resident's visit. Poor guy didn't know what he was getting himself into, so I warned him. I'll spare the details, but he ran out of the room and searched for a neurosurgeon. He found one to look at yesterday's MRI and the one from September 26. He told this third-year resident to relay to us that Leo does not have hydrocephalus and that there seemed to be no changes from the previous scan. Eventually Dr. Rabin, a radiologist we've never met but the one that does all of Leo's MRI readings for consistency, basically said the same thing. The measurements were different (probably because different equipment was used), but these are secondary now. The most important point is that he agreed Leo didn't have hydrocephalus. Thank G-d!

This turned-out to be a very good resident, but unfortunately I didn't catch his name. He was good because he found a neursurgeon to compare MRIs on Sunday morning, stayed to listen to us (mostly bitch and complain about how Leo's current condition was caused because of his peers' negligence), and made us believe he cared. So on to these waves of pain. He said at this point the only option was to actually feed Leo. We wondered if that was taught in a class in medical school, but decided not to be outwardly sarcastic to him since he seemed to be trying to help. Long story short, Leo's feedings would be slowly increased, every 2 hours, until they reached 60mL per hour. If there weren't any issues with more pain, throwing-up, etc., the dilution would then be reduced until Leo was being fed only formula.

The waves of pain didn't completely go away. Sometimes they weren't as frequent. Sometimes they didn't seem to be as intense. Maybe it was the food. Maybe it was the Tylenol and/or Ativan. Maybe it was all 3. We don't know and none of the doctors knew, but Leo seemed ever so slightly better today than the previous few days.

Dr. Garcia came and talked to us for a while. There was a thought maybe Leo had colitis. It was simple to diagnose (lab work) and easy to treat. Dr. Hernandez came a few minutes later. I half-jokingly reminded him that he had promised to come between 10 and 11, not 12:30, and he just smiled. Regardless, he said Leo shouldn't have colitis because there would be fresh, red blood in his poop, but there was none. The treatment: food. He agreed with regimen we told him from the resident, said he'd come back tomorrow, felt Leo's belly and said it was soft (the way every single nurse, resident, and attending had done), and left.

Eventually Leo did reach 60mL per hour and did seem just a tad more comfortable.

This weekend was nearly impossible for everyone, especially Leo. The Grandmothers were like fountains at Leo's bedside, impotently trying to make him comfortable and helplessly watching and hearing his suffering. The Grandfathers couldn't even watch for the most part. Anna and Nina can only see one of us at a time because the other is always at the hospital with Leo. Marina and I are at wit's end with the "care" Leo has gotten, nevermind the physical and psychological exhaustion of having to fight every step of the way. But since Leo can't fight for himself yet, we have to do it for his sake. Leo's care has been a lot better since the ICU visit, but the fact that he wound-up in the ICU while being watched by countless nurses, residents, and attendings is inexcusable. The nurses seem much better in this step-down ICU and the attendings stay a little longer when talking to us and listen to us as well. But Leo remains in pain and is somewhat unresponsive, although conscious -- all brought-on by this hospitalization. At this point, though, we just want to take him home and slowly restart treatment. We know the ultimate root cause of all this and our goal remains the same. We just need to figure-out how to avoid all the landmines.

10/12: Out of Intensive Care

2006-10-12T21:23:00.000-06:00

Leo is out of intensive care, but not in the regular pediatric department. He's somewhere in-between. He's also a bit more alert, which means he feels more pain: it took a lot of time, bitching, and complaining for Leo to get some pain medicine today. He seems to have pooped-out everything possible. His blood tests seems to be stable today and we're praying they remain stable.

10/11: PICU Day 3

2006-10-11T21:26:00.000-06:00

Today was a fairly uneventful day medically speaking. Leo had the usual regimen of antibiotics, antacid, decadron (which was 5 hours late once), anti-fungals, and the "Go Lightly" stuff that's supposed to clear-out his digestive tract. It gives him serious cramps/gas/pain, so he winds-up getting a pain killer or a mild sedative. On the other hand, he may have another infection, so a culture was drawn to see what grows.

The 12pm meeting among the doctors happened at 2pm. Unfortunately the specialists that needed to be there weren't. Drs. Kroin and Battle, a palliative care nurse, a care coordinator, and Clint from Clinical Ethics were present. We weren't sure exactly why Clint was there, but he left after 10 minutes anyway because he had to be somewhere else. In a nutshell, we realized that Leo really needs an oncologist to follow him. I told the doctors that we don't need an oncologist's treatment (i.e. chemo and radiation) or his personal opinions. But we do need his experience and knowledge, especially to anticipate problems and take measure to avoid them. We will be more than happy to discuss Leo's tumor treatment, but as long as that discussion centers on the facts of antineoplastons. Dr. Battle said she'd try to get someone for us as soon as possible and we believe she'll come through. She and Dr. Kroin have been there all along, continue to do so, and we can't thank them enough for at least trying to help and watch Leo.

Finally, Joe the PICU resident, explained last night why an endocrinologist isn't what we need. He said that endocrinologists are experts in the glands and systems that produce hormones, not the other systems that may be affected. So from that perspective, Leo is not in an adrenal crisis, which is why the endocrinologist has little to add. I wish someone had explained this to me early on so that I didn't have to waste so much time thinking, bitching, and complaining about this. Leo is now on 6mg of decadron, which will probably stay until he's back to being as normal as possible under the circumstances.

10/10: PICU Day 2

2006-10-10T21:55:00.000-06:00

Because of Leo's constipation, they started giving him enemas and something called "Go Lightly" (polyethylene glycol) last night. Marina stayed here all night and said cleaning-up the poop sometimes took 2 people. Sorry for the graphic details, but that's my boy! :) Seriously, he has definitely started to be cleaned-out, but they told us up-front that this may take a couple of days. With this cleaning, Leo's vitals (blood pressure, respiration, and oxygen saturation) have stabilized and are just about normal. They may not be perfect, but they're good enough. So maybe this can be considered "not bad" news.

Another bit of "not bad" news is that his electrolytes have generally come into the normal range, more or less. Again, some may not be perfect, but they, too, are good enough.

The remaining bits of bad news include hemoglobin and his nonresponsiveness. Leo had a transfusion yesterday, which improved hemoglobin to over 10. This morning, though, it had dropped to about 8.3 or so and continued to drop to about 7 by 6pm. So another transfusion has been started. The problem is, they have no idea where, how, or why he's losing blood. Obviously this is extremely disturbing to everyone following Leo, and of course us. The other bit of bad news, his mental state, hasn't really improved. His eyes react to light and he generally reacts to pain. I'm sure he can hear us because his eyes sometimes open wide. With these 2 bad things and lots of complaining and bitching, the care conference is being held tomorrow at noon, as far as I know.

I hope to sound just a tiny bit less enraged tonight. I'm still angry at everyone who let him get to this point -- including us. Maybe we should have actually yelled, and done it sooner, but that doesn't matter now. All that matters is that the Intensive Care doctors and nurses continue to be amazing. It's like traveling first class and staying at the Ritz -- unfortunately the destination was hell. Anyway, G-d willing Leo will continue to improve and we can upgrade to limbo soon.

10/9: Leo is in Intensive Care

2006-10-09T20:53:00.000-06:00

The "regular" doctors on the "normal" side of the pediatric floor have driven Leo into the Pediatric Intensive Care Unit (PICU). I don't even know where to begin...

We came-in 9 days ago because Leo wasn't eating. Now, not only is he not being fed, he had to have 2 CT scans today to rule-out bleeding in his brain and in his belly because his hemoglobin dropped to 5 (normal levels are above 11 or 12). The 5 was detected at about 6am this morning, but no one told us. They thought it was a mistake because yesterday's level was between 10-12. So they did another one at about 9am. Same result. Still no one told us because they still wouldn't believe it. In the mean time, Leo's condition steadily got worse until Dr. Battle, the director of palliative care, stopped by and just looked at Leo. She immediately called PICU and a few minutes later Leo was on his way to the other side of the pediatric floor.

Tests and results:

Before even getting to PICU, the infectious disease doctors came by and told us yesterday's blood culture has been negative so far. This is very confusing because Saturday's was positive. So even though they aren't sure he really has an infection, they're being very risk-averse and still continuing antibiotics.
When we got the PICU, Leo had an abdominal x-ray to rule-out mechanical obstruction of the intestines. There was no obstruction (e.g. twisting), but CTs were still required.
After a bunch more blood tests, antibiotics, and the start of another blood transfusion, I went with Leo to the CT scans. Fortunately they all showed there didn't seem to be any bleeding anywhere. The CT scans did show that his entire digestive tract is backed-up.

Leo has been so constipated that he can't even poop anymore, probably thinking it's going to hurt so much (and is probably is). So in the PICU, after all the tests return negative, they decided that the only course of action is to clear-up his digestive tract. A gastroenterologist, Dr. Berman, stopped by before Leo was taken to the PICU and suggested something called, "Go Lightly," to help Leo with the constipation. So the PICU was going to start that as soon as the transfusion was complete.

Then after the transfusion was complete, nurse Sandy decided to draw-back from Leo's NG tube to see if anything was in the stomach. She drew-back about 200mL of goo! It looked like coffee with milk that's about to go bad. It smelled exactly like the PediaSure they had been giving Leo a few days back, which stopped Saturday. The problem is, of course, that that had been in his stomach ever since! Combined with the constipation, this were probably the cause of his discomfort and straining. As soon as she drew-out that crap, Leo's pulse came down (it has been too high), his breathing rate slowed to normal, and his blood pressure normalized.

Clearly Leo is in critical shape. The two main things that need to be done are to clear-out his digestive tract and continue the antibiotics to clear the infection. The last, but possibly most important, thing that we need to do -- and I beg everyone reading this will do -- is pray for Leo. He's only 3 1/2. He hasn't even had a chance. Please join us to pray and beg G-d to give Leo a chance.

10/8: Got an Infection in the Hospital!

2006-10-08T21:24:00.000-06:00

If the decadron, thrush, rashes, not eating, jaw problems, etc., weren't enough, Leo got an infection at Lutheran General Hospital. If the infection part sounds familiar, it should. This is the same infection he got on July 7, just before we were meant to go Houston. So now, in addition to diflucan and nystatin for thrush, decadron, protonix, the occasional pain killer, and eletrolytes, Leo is getting 2 antibiotics. They're on the strong and broad side, but he should go to 1 antibiotic by the time he goes home. But wait, there's more.

Leo's sodium and albumin (protein) are too low and he seems to be retaining water. They think this is in part caused by the infection; that's probably true, but there's that other little drug that is probably involved. Anyway, protonix just finished and Leo is now getting his first (and hopefully only) dose of albumin. Their theory is that the albumin will create conditions in the blood that, by osmosis, will cause water to enter from the tissue, reducing the swelling and water retention. Then immediately after the albumin, they will give him lasix, a diuretic, to make him pee out all the water in his blood.

So this tragedy of problems has caused me to rant and rave at every medical person that walks into Leo's room. No one is immune, not even the nurses' aides that take Leo's blood pressure. Supposedly the charge nurse left a voicemail for an associate director of something or other to stop by tonight, after she gets in at 11pm. Tomorrow, though, is Columbus Day and I have the day off. I will be spending all day looking for Bruce Campbell, President of Lutheran General Hospital. First, I need the 3 C's in each of the doctors that sees and/or treats Leo: competent, caring, and compassionate. Second, I need an endocrinologist that understands Leo's condition in light of decadron and is willing to follow him. Third, it would be nice if one of the oncologists, even Dr. Goodell (the famous author), would consult with us -- we don't want his treatments or opinions, just his knowledge and experience. Fourth, for a child in Leo's condition to get an infection in the hospital is completely unacceptable.

It's been a long, frustrating, blood-boiling day. G-d willing tomorrow will be just a little bit better.

10/7: Not Home...

2006-10-07T19:46:00.000-06:00

So Leo is being kept in the hospital, most likely, until Monday. Why? Why not. This has been such a frustrating day, but I'm going to try to keep my use of the word "idiot(s)" to a minimum, although I just can't control my sarcasm. The day started at 4am, when Leo's pulse and breathing became very rapid -- a common decadron weaning side-effect. The resident decided Leo needed an emergency EKG and chest x-ray. They were done. They showed nothing. Pulse and breathing continued to be fast.

At about 8am, the door was flung open, lights switched-on, all sorts of noise was made, and a gastroenterologist entered. She spoke with a thick accent and extremely loudly, but didn't really say anything interesting. She also didn't really care about the pulse or the breathing.

A few minutes after the doctor left, nurse Allie came in and saw Leo had thrown-up the previous feeding. He also threw-up the subsequent feeding and everyone started to worry. Dr. Kroin called and said she wanted a blood culture door to see if he has an infection. I mean, come on, the chest x-ray showed nothing, the EKG showed nothing, something has to be wrong -- a reason needs to be found to keep Leo here for a few more days. No one was willing to call Dr. Ghai, the endocrinologist, so I paged her. She immediately called me back and basically told me she wasn't following Leo; she just gave her advice/opinion; whoever started the decadron needed to wean him; and gave me the distinct impression she wanted nothing to do with us. What about the pulse and the breathing? Ask whoever prescribed the decadron. Nice, another professional.

At about 2pm, right at the time of the decadron dose, Nurse Allie couldn't get blood out of the central line (!) for the culture and we got TPA. TPA didn't work an hour and a half later at 3:30pm, which made my blood pressure skyrocket. I stormed around and told all the nurses and residents that if they did anything today, they had to get the line opened. So they ordered more TPA. Since TPA takes 1-1.5 hours, the 2pm decadron dose would be given sometime around 5 because Leo doesn't have enough decadron weaning side-effects. Just as they got the second dose of TPA and a bunch of new nurses to help, lo and behold blood. That TPA went unused. I had to ask for the morning blood test's results, which were fine, so more money well spent.

It seems to me that in 4 years of medical school, all some "doctors" learn is how to order diagnostic tests (x-rays, EKGS, and blood tests), order/prescribe medicine (TPA, protonics, etc.), and take a wait-and-see attitude without taking-on much responsibility. I'm sorry if that offends anyone, but that's all that's been done here in a week!

Leo got a nice sponge bath and the rest of the day was fairly uneventful, except his pulse and breathing did slow down a bit. Grandma Shura and Grandma Bella noticed that Leo's left eye, which was turning in a lot, wasn't turning in as much. Leo's hands are now relaxed more than they are clenched into fists. I was doing some of the physical therapy shown to improve his ankles, which were also a bit looser than before. We truly believe these are all signs of the decadron easing its evil grip on Leo, so we need to -- and will -- stay the course.

10/6: Still in the Hospital

2006-10-06T20:50:00.000-06:00

Leo's still in the hospital, but now it seems for technical/bureaucratic reasons. He's still sleeping a lot, but is wide awake in the mornings. He's a little out of it but as usual, we know it's because of the decadron. Speaking of my favorite topic, today's dose was lowered again to 6mg -- that's 50% of where we were just a few weeks ago. Still a long way to go, but at least we're moving in the right direction.

First, my insurance wouldn't cover another home health company that was supposed to provide a pump and formula for the NG tube and therapy for Leo at home. So I guess the discharge people here were frantically trying to call around to find a company that would be covered; otherwise we couldn't get a pump to feed him. Obviously we'd pay for it ourselves, but no one even presented us with this option until it was too late in the day when OptionCare, the company we have now, was contacted. My insurance agreed to pay for them.

Second, we're in a bit of a catch-22. Leo can't be discharged from the hospital until we have a pump, formula, and all the other supplies at home. Then we found out that no home health company will bring the stuff until Leo is discharged. But we can't get discharged until... Anyway, OptionCare finally said that as long as we have a discharge order, they'll send a driver with the goods. But this was also too late in the day.

Finally, some clarification about all the canceled lab work. I expressed my frustration to the resident last night at 11:30pm. For example, she said she'd stop by around 7:30pm and never did. She said they were very busy. Anyway, the skin culture was for naught. The scrape they took had nothing to grow, so it was discontinued/canceled. Combined with the fact that the diflucan is working, the infectious disease doctors thought this would be a waste of time, since the oral culture came back positive for candida (i.e. thrush). We knew this without all the doctors' schooling. Moving on to the canceled blood test, that was a duplicate, so it was canceled. Leo did have a blood test today. Did they do a liver function test because of the diflucan? No. Why not? Because there's another blood test tomorrow! Will they be checking live function then? Again, No. Why not? No one ordered it. So I made the nurse tell the resident to order this.

Our hospital visits -- and not just this one -- reminded me of the famous line from the movie Space Balls, a Mel Brooks spoof of Star Wars, when Dark Helmet says, "I knew it! I'm surrounded by *ssholes!" And if this isn't enough, you must read Chase Sammut's blog. Absurd doesn't even come close to describing their latest ordeal!

10/5: Going Home?

2006-10-05T20:17:00.000-06:00

There's a good chance Leo will be going home tomorrow. Just in time for the weekend. Leo is getting a new type of antacid that's supposed to be easier on the gut than stuff like prevacid or pepcid and a pharmacy is already working on this. I think he's going to be back on oral diflucan now that the IV diflucan seems to have done its job. Marina said he took a few sips of milk and juice today without anything coming back through his nose, although he did cough a little. Leo is still very, very tired and sleeps a lot. This seems to be a decadron withdrawal side-effect, but it may actually be good for him to get some rest. He's got a long battle ahead of him and tomorrow his dose of decadron will decrease by another 1 to 6mg.

Something strange has been happening here at the hospital:

This morning Dr. Kroin told Marina not to give Leo anything to drink because, as usual, she's afraid he'll get aspirational pneumonia (i.e. stuff getting into his lungs from choking and causing infection). The infectious diseases doctor thought that was very strange.
In the evening, I asked whether any blood tests have been done since Sunday. After all, Leo is on IV diflucan, which sometimes causes liver toxicity. We knew this before and Dr. Hernandez, the gastroenterologist, confirmed that his albumin needs to monitored closely. No tests have been done, although one test (yesterday, I think) was canceled. There is a test scheduled for tomorrow. This is very odd: wouldn't they want to know whether his liver is being poisoned!?
I also asked what the results were of the skin culture the infectious diseases doctors took either Monday or Tuesday, since they wanted to find out exactly what was growing topically. Guess what? Someone canceled the culture!

So I don't know what's going on -- and neither do the poor nurses (they're just the messengers) -- but I'm waiting to open-up a can of whoopass on the resident. She told me she'd stop by several hours ago!

In fact, this whole hospital stay has been odd. Dr. Kroin seems to be conspiring against antineoplastons and has been mentioning "traditional" chemo for Leo... That antineoplastons are too hard on us. We don't know the whole story, but we don't like it one bit. And if I hear the word radiation come out of her mouth, that will be the last conversation we ever have with her, regardless what her intentions may be. I'm going to find someone here...this is ridiculous.

10/4: Dr. Dubinsky

2006-10-04T20:58:00.000-06:00

Since Leo's dose of decadron was decreased to 7mg yesterday, he has become somnolent (tonight I easily convinced an intern at Lutheran General that I'm a doctor -- he was actually asking ME questions and I was telling him what to do!). This is probably also because of the fact that Leo has hardly slept since July. So he spent most of the day today asleep. He did wake up a few times, but not for long. This may actually be a good thing so that when he's out of the hospital we'll have to get him back on antineoplastons and he'll need all the rest he can get.

Leo's skin also looks much better than before. The infectious diseases people are doing a skin culture that should tell us something more specific Friday.

At home today Leo finally got a hospital-style adjustable bed and a low air loss mattress. I'm sure he'll be very excited about this. But it's already used -- Nina and Anna really enjoyed climbing all over it! Seriously, it should help the whole skin situation as well by letting air get to his back through the mattress, which comes with a pump that blows air through laser-drilled holes. It should also make him a lot more comfortable during the day and at night.

It's nearly impossible nowadays for me to post a note without ranting about decadron, so I won't disappoint. Today Dr. Ghai, the endocrinologist, spoke with Dr. Barbara and Dr. Weaver in Houston. They came-up with a plan to reduce Leo's intake. From now on, we can decrease the decadron by 1mg every 3 days. This means by mid-October, Leo should only be taking 3mg per day, at 1mg per dose -- some of the best planning we've heard! There is a consideration, at that point, to switch him to a much milder steroid (something I suggested even before speaking to the endocrinologist), such as hydrocortisone, but first things first. This is probably what's contributing to his sleepiness.

10/3: The Truth Comes Out

2006-10-03T21:54:00.000-06:00

Today, a real live doctor admitted that virtually all of Leo's current symptoms, including the swelling, muscle soreness and stiffness, joint soreness and stiffness, weakness, susceptibility to infections, inability to move his jaw, high blood sugar (onset diabetes), etc. are from decadron! Dr. Ghai, a pediatric endocrinologist, told us. Finally, a (medical) person not afraid of decadron.

Further, she said that Leo's dose was, and remains, too high. We need to speed-up decreasing it. No longer will we need to decrease 1mg per week. We should be able to decrease every 3 days. Obviously there are more details to be worked-out, including how much to decrease, but she immediately ordered a decrease today from 8mg to 7mg -- we just decreased to 8mg 3 or 4 days ago. In addition, she said she'd be happy to speak to the doctors in Houston and Dr. Barbara is always happy to speak to local doctors, so tomorrow should be a very interesting day.

Most importantly, Leo seems to be getting better. The NG tube is providing nutrition and filling his belly, which lets him relax, since he can eat without expending any energy. For now, this is a good thing. The thrush on his skin is obviously clearing-up. His diaper area looks great; the butt is still red, but otherwise a big improvement. His back is also nowhere nearly as red as it was. The infectious disease doctors cultured stuff from his skin so we should know what that is, and how to treat it, soon. His wound is also healing better and has lost its perfectly round shape after the debriding. Leo continues to move his arms and relax his fingers, so we're seeing signs of improvement all around.

10/2: Leo Gets a Feeding Tube

2006-10-02T19:26:00.000-06:00

After another visit by the gastroenterologist this morning, as well as Dr. Kroin, a physical therapist, and 3 infectious disease doctors, we decided Leo needed a feeding tube. The best option right now was the nasogastric (NG) tube because it can stay in for about a month and requires no surgery. The procedure to put it in took about 30 seconds, so his discomfort really was minimized. It was done without sedation, though, because the associated risks were much greater than the discomfort. So Leo now has a thin plastic tube sticking out his nose. This was the best option because while we're reducing his decadron and fighting thrush, he can get all the nutrition, medicine, and supplements he needs without any discomfort. He can even get back on treatment once we find out the approximate amount of liquid he needs for his dose. Besides, he can still eat and drink.

Unfortunately an endocrinologist didn't stop by. We wanted to talk to one of these hormonal experts to see what else, if anything, we can do about reducing Leo's decadron. On this note, Leo moved his legs today. So now we've seen movement in his arms, legs, and toes. Leo also unclenched hist fists and relaxed his fingers for a while today. These are all functions decadron had taken away, which are now finally returning.

Finally, I received a signed copy of Leo's MRI from Burzynski. It showed no change in size and less enhancement (a good thing). Considering Leo had been off treatment for almost 3 weeks, this is good news.

10/1: We Know the Devil...

2006-10-01T19:39:00.000-06:00

...his name is Decadron.

We decided Leo needed to be taken to the ER last night. He wasn't eating or drinking and seemed very weak. He also wouldn't or couldn't open his mouth. So at around midnight, I took him to Lutheran General Hospital. Although my cousin Irina had just gotten off work there, she stayed with us until about 5am, after Leo had been moved into a room and 2 unimpressive residents had their way with him.

In the ER, we were first visited by the first-year ER resident, who quickly brought the attending. They tried to pry Leo's mouth open with two tounge depressors, but could hardly do it. Even though he resisted and fought them all the way (good boy), they did shine a light inside and saw thrush. The other thing that happened in the ER was a chest x-ray. Still clear, thankfully, so no pneumonia.

Upstairs, the 2 residents asked a truckload of questions and I sometimes felt like I was teaching them. For example, when I said Leo had a bilateral hernia in 2004, one of them asked, "So, what was done?" It should have been more than obvious that hernia surgery was done. Anyway, they started Leo on electrolytes and we fell asleep at about 6am.

In the morning, Dr. Ruge, a pediatric neurosurgeon, briefly stopped by. He said he looked at Tuesday's MRI, which showed no change from the previous one, and that Leo wasn't really a candidate for brain surgery. Thank G-d. Then came a physical therapist, who was the only person all day to actually help us with something. She evaluated Leo and said the 2 issues he has are weakened muscles throughout and his ankles are very, very stiff. She showed us exercises to perform as frequently as we can, suggested a Tumble Forms chair, and said he can/should get orthotic braces to help with the ankles. Then a dietitian came for some unknown reason. Finally, Dr. Hernandez, a pediatric gastroenterologist came.

We wanted to see a gastroenterologist because there was some chance that Leo would require a feeding tube. Fortunately he said that we first need to aggressively treat Leo's thrush with IV diflucan, which was started a few minutes before he walked in. After a few days on the IV diflucan, they would re-evaluate Leo and discuss options. At this point, though, he said going for a feeding tube is too risky and unnecessary. G-d willing this hold.

Now, the one thing that each and every doctor has said that has contributed to Leo's thrush, Leo's weakness, Leo's generally difficult state is decadron. We have heard this many, many times from "professionals," but have known it ourselves for the past few weeks based on our own analysis. Unfortunately, we can't just take Leo off the steroids, although he is down to 8mg per day from 12mg. We hope we can continue to decrease 1mg per week, but having read about some of the withdrawal issues, it seems our poor little guy is caught between a rock and a hard place and we have to go slow for his sake. But we really need to get him off steroids for his sake as well. This situation is nearly impossible and watching him suffer only makes it worse.

9/30: Waiting...

2006-09-30T22:01:00.000-06:00

Unfortunately Friday afternoon came and went and I didn't get Leo's MRI results from Dr. Burzynski. He has a lot of patients and unfortunately didn't have time for Leo's MRI, but promised the final results Monday.

In the mean time, we have come to the realization that we need the doctors to give us their opinions and advice (and prescriptions), but we need to make the final decisions when it comes to Leo. For example, we somehow started moving down the path of a feeding tube, either nasogastric (NG) or a percutaneous endoscopically placed gastrostomy (PEG) tube. The NG goes through the nose and into the stomach, while the PEG is surgically placed in the belly. Both can provide nutrition, medicine, liquids, etc. Why? We think this was partly Dr. Kroin's idea, since we said that Leo hasn't been eating very well. We also called Houston this morning and spoke to Dr. Barbara about an NG tube, since it doesn't require surgery. She said if we're going down this route, the NG isn't a very good solution, since it would need to be replaced every 2-3 days and is very uncomfortable. So a PEG would be the better option, but again, it requires surgery. Both provide ample opportunity for infections. Regardless, we were ready (kind of still are) to go to the hospital for an evaluation and one of these procedures and almost did, but somehow decided against this right now.

On the other hand, Leo's drinking isn't better. He drinks thin liquids much better than the thick ones. While the thin ones hydrate him and provide vitamins, the thick ones provide more calories and protein. Since he isn't eating well, his caloric intake is probably too low, which is why we keep pushing the thicker ones, which come up through his nose when he coughs. The reason Leo isn't eating well is because he can't or won't open his mouth. He'll open it just enough to drink, but not to eat, and we don't know why. We thought this happened when he was off antineoplastons (i.e. another decadron side-effect), but he's been on all week and this hasn't improved. It shouldn't be thrush (his mouth looks clear), but there's a chance it may be something like a sore throat, which everyone has had around here. A few times I asked if his throat hurt and about half the time he said yes. So what we're thinking of doing, and will discuss with Houston on Monday, is to lower his dose of antineoplastons to the bottom of the therapeutic range to minimize the amount he needs to drink.

The only bit of good news I can report is that Leo's now down to 8mg of decadron per day and we actually have seen several improvements. In addition to getting his voice back (but not the speech yet), he has begun to move both shoulders and arms much better than before -- including the right one, which was one of the first things to go. Tonight we also saw movement in his toes. Obviously he's got a long way to go before being back to normal/full function, but we are clearly moving in the right direction in this regard. The best-case scenario is for Leo to be down to 3mg of decadron by the end of October, which seems like eternity right now.

9/29: Dr. Kroin Makes a Housecall

2006-09-29T03:55:00.000-06:00

A few days ago, Dr. Kroin, our pediatrician, offered to stop by our house to check-up on Leo. We weren't sure if we'd heard that right, but she repeated that she'd be willing to stop by on her day off, to see how he was doing. Of course we accepted and she came by Thursday evening. We wanted her mainly to check on Leo's skin. His back and shoulders seem to have a heat rash; his entire diaper area is not looking so good; and generally his skin seems to be suffering the most. This is all fairly new, but clearly makes him more uncomfortable. She came at about 7:15pm and closely checked out everything. She told us it seemed to be a combination of things.

First, just as we thought, there were signs of skin issues related to decadron, which causes thinning of the skin, so it looks more red and spotty because all the stuff underneath (e.g. blood vessels) becomes more visible. Second, also as we thought, Leo does have a heat rash, mostly because he's immobile right now and not enough air gets to his back, which stays wetter than it should. Third, he seems to have a fungus on his skin, which is probably caused by decadron weaking his defenses and allowing crap like this to have its way inside and out.

The plan? We're already lowering the decadron, but I'm guessing it's going to take quite a while for Leo's skin to return to normal. We've already been changing his shirts much more often; giving him sponge baths, which he now hates, more often; and putting calamine lotion on his back and shoulders to stop the itching. This weekend we'll order a low air loss mattress and probably an adjustable bed so that he can sit-up without having to switch furniture. A low air loss mattress is basically an air mattress that pushes air through and get to the skin, so there is "low air lost" by the skin...at least that's my understanding. The air cools and dries the skin, which should help alleviate and prevent heat rashes, these fungal things, and make Leo much more comfortable. Finally, Dr. Kroin brought a bunch of different samples of creams and things that combine anti-fungal medicines with the two most common skin/rash substances, zinc oxide and petroleum jelly.

She left after about an hour and a half at about 8:45pm. She has been -- and continues to be -- incredibly helpful, supportive, and caring. I passed-out within seconds of her departure and Marina pulled the night shift, waking me up at 4am. Leo drank a little and I noticed that the pump was showing 13 minutes left until bag 2 (AS2-1) starts, which is the antineoplaston that has a sedative side-effect, which usually works. So I finally have some time to catch-up on these posts...with plenty of coffe by my side.

Today will be another anxiety-filled day because I should be getting a final reading of Leo's MRI. I don't expect much of a reduction since Leo was off treatment for so long. Right now, the goal is to do everything to prevent future interferences. I'll post the results when I get them.

9/27: Waiting for MRI Results

2006-09-28T00:49:00.000-06:00

Leo had the MRI yesterday and didn't wind-up staying at the hospital. Oh yeah, did I mention the hospital stay? Because of the thrush that returned over the weekend, not only did we have to stop treatment, but Leo stopped eating and drinking. Of course we were worried and on Monday consulted with Dr. Kroin, who unfortunately is probably the last doctor in the country to call her patients Saturday and Sunday night to see how they're doing. We discussed the possibility of keeping Leo in the hospital after the MRI to get some IV liquids into him to ensure he doesn't get dehydrated. But being the fighter that he is, Leo started drinking Monday night.

Tuesday after the MRI Leo drank some more, had some nasty hospital oatmeal, and had his eletrolytes tested. The results came back fine and we went home. By the time we got home, Dr. Kroin faxed me the preliminary results, read by a different doctor than the first MRI. These were more confusing than usual and partly said good stuff and partly not so good stuff, so on average there's no change. I spoke to Dr. Barbara of course, who said not to rely on these kinds of things especially when read by a different doctor. She said they all see and measure things differently, which was obvious. Consistency is key. Dr. Khan at the Burzynski Clinic would be working on measuring and analyzing the MRI and we'd get a final, signed copy sometime Friday afternoon. He's the radiologist that's read all of Leo's MRIs down there, along with Dr. Dolgopolov. So the wait continues...

9/25: Suddenly Sleep isn't such a Good Thing

2006-09-25T19:52:00.000-06:00

For the first time since July, Leo slept for 9 hours last night! He's off of treatment, so no need to wake-up, drink, and pee. Instead, he slept. As much as the sleep was welcome for all of us, it was an uncomfortable sleep filled with anxiety and restlessness...at least for me. Leo seemed perfectly comfortable, though, which is probably good under the circumstances. But sleep does mean no antineoplastons, delay for the cure, and decadron taking over. When he woke up at 5am he wanted to drink, which he did fairly well. But opening his mouth to eat was another story. The same thing happened 2 weeks ago, during his first bout with thrush. When we stopped the treatment, he stopped opening his mouth and eating. Since the thrush is back now, and almost under control, we stopped the antineoplastons and witness the same thing regarding his mouth and eating. We also noticed that drinking thin liquids seems easier than thick ones, like milk or PediaSure, and he drank 4 glasses of orange juice today. Speaking of thrush, turns out that one of the reasons almost no one has gentian violet in stock anymore is because an Australian study found it may cause mouth cancer. I'm sure it's rare and all that, but Leo's situation is enough. We certainly don't need more grief.

Leo hasn't eaten since yesterday and we were seriously considering taking him to the hospital to get IV fluids tonight. Today's bloodwork was okay; everything was basically in range. With that and a very long consultation with Dr. Kroin we decided to let him sleep another night at home. Had anything on today's blood test been out of range, I would have been writing this from the hospital. Most likely, though, he'll stay at Lutheran General tomorrow night, getting IV fluids and not being allowed to rest. So today was another anxiety-filled today because of the thought of staying in the hospital overnight.

Tomorrow morning at 7:30am, again at Lutheran General/Parkside, Leo will have an MRI. This one is for the protocol; otherwise we would have delayed it because of all the stoppages in treatment. But we're still hoping, praying, and begging for something good. I asked Houston to ask for a stat reading tomorrow, so at least we won't have to wait. It won't be a final reading; that will come later. Besides, Houston will do its own reading and analysis. This one is just for us.

9/24: How do we Remove a Curse?

2006-09-24T19:52:00.000-06:00

It sure feels like we're cursed... Leo's thrush isn't better today, which means he's still not drinking or eating very well, which means he's off of antineoplastons. This is, far and away, the most depressing and worrisome aspect right now. When he's on antineoplastons, he seems to have a load lifted (I think it's the load brought-on by decadron). Without antineoplastons, he can't even open his jaw.

Leiann and our home health nurse Candice recommended something we never heard of before, gentian violet, for thrush. Most of the local drug stores claim they can order it, but none has it in stock. In the mean time, we're continuing to give Leo diflucan and nystatin and praying he gets through this quickly. We've also switched to everything disposable for him. Cups, spoons, droppers, etc. because the thrush was on its way to being gone, but came back, which may mean reinfection.

On the other hand, there are 2 bits of good news. First, Leo's wound seems to be healing according to Candice. It's shallower, the tunneling is smaller, and the diameter is smaller as well. Second, we've continued to decrease Leo's decadron without any new symptoms or side-effects. He's down to 9mg per day and maybe these crazy infections and other steroid side-effects will go away soon.

The second part of this curse, our flooded basement, is mostly resolved. Thanks to our friends Danny and Amy, my brother Boris, and our neighbor Mike, who brought dehumidifiers, fans, and Shop Vacs and removed wet rolls of carpet, padding, boxes, and other wet stuff that needed to be thrown out. Not sure what the garbage men will think tomorrow -- there's a mountain of trash -- but bribery usually works. In the mean time, we found out that the pilot light went out on the water heater, and by the evening we had used-up all the hot water. Luckily I was able to reignite it without blowing-up the house.

So the MRI is Tuesday and we're terribly anxious about it because Leo's treatment has been interrupted so much. Even the treatment he's been on since the surgery almost 2 weeks ago has been less than the maximum dose. We're still expecting something good, since this has been the only treatment period with issues. In preparation, we really need someone to lift this curse. That's the only way we can even image what may be going on. Curse, bad luck, call it whatever you want, but we've had enough, and Leo has had enough, and Anna and Nina have also had enough (they've got little colds again).

9/23: When it Rains, it Pours

2006-09-23T23:03:00.000-06:00

Just when we thought it was safe to go back in the water, insult was added to injury. That's a mixed metaphor, but today brought another setback and more issues. The thrush is back with a vengeance. We thought it was back yesterday, but there's no doubt today. Again everything Leo drinks comes back through his nose, which means he can't get enough to drink. If he can't get enough to drink, he can't be on the antineoplastons. So today at about 7pm we shut-off Leo's pump and called Houston. They agreed that we did the right thing. We also called Dr. Kroin and asked what we should do. She suggested doubling Leo's dose of diflucan to 5mL today, which we did, as well as continuing to give 2.5mL once a day a week or two (until it's gone). She also recommended we restart nystatin, since there shouldn't be any bad interaction between these two. Unfortunately, that's all there is for these types of fungal infections. Dr. Kubove, from Houston, said that if this doesn't work, there's always diflucan IV.

For some reason, while we were trying to figure-out what to do about Leo's thrush, I decided to go into our basement because of the recent heavy rains. Our sump pump had been making strange sounds, but it was dry down there. Until tonight. Our finished basement, which just means it has old paneling that came with the house and carpet we installed after moving in, had about 5 inches of standing water. This is the insult portion. Obviously our sump pump and its battery backup had broken. So I called the first plumbing service I found in the yellow pages and about 2 hours later 2 guys from Blanton Brothers Plumbing and Sewer showed-up.

It took them about an hour to remove the old and install the new. They asked whether we wanted a backup, which nearly tripled the total cost, and again we felt like we had no choice since we dont want this to happen again. We probably got screwed big-time, but beggars can't be choosers. The water immediately started receding and Marina decided to get out the Shop Vac and start vacuuming-up some of the water that's in the carpet and padding. It's now about midnight and we've stopped for the night. There's no way we're going to get all of it out and probably have to call one of those cleaning services to get most of the water out, get a couple of box fans and run them all day and night until it's dry, and possibly a dehumidifier. Most importantly, we need to prevent mold. Anyone with ideas, Shop Vacs, really sharp box cutters to remove the carpet, etc. is welcome!

9/22: May You Be Inscribed And Sealed Immediately For A Good Life

2006-09-23T00:59:00.000-06:00

Tonight marked the start of the Jewish New (Rosh) Year (Hashanah) 5767. Rosh Hashanah is the “Day of Judgment,” when G-d opens the Book of Life and decides everyone’s fate. It is also the Day of Remembrance, where we should reflect on the deeds of the previous year.

This is a very difficult post to write. The past year has been excruciatingly difficult, nearly impossible. It is definitely a year we will never forget and will probably reflect on it as long as we’re alive.

We have 10 days until G-d closes the Book of Life, so we pray and beg G-d to save Leo. May you be inscribed and sealed immediately for a good life.

9/20: The Plastic Surgeon and the Catheter

2006-09-21T00:11:00.000-06:00

Today we took Leo to see Dr. Schechter, a plastic surgeon, since he has experience with wounds. Of course Leo wasn't terribly happy to have yet another stranger in a white coat touching him under a big bright light. The good news is that Leo's wound doesn't seem to be infected -- this is very important since we must minimize the downtime from antineoplastons, especially for stuff like antibiotics. The not so good news is that it isn't healing very fast at all, which is probably due to the combination of decadron, which seems to have screwed-up everything, and the general state of treating a tumor.

The tumor treatment, we didn't immediately realize, is trying to stop quickly-growing cells, but that's exactly what the wound needs to close! So he asked if there's any way Leo can be off of treatment for a few weeks, since that's how long he said it should take to heal, but obviously that's not an option. Treating the tumor comes first. In the mean time, we'll continue to have daily dressing changes and make sure nothing gets infected. Speaking of dressing changes, he did suggest to switch from iodoform to Aquacel, which is what our home health nurse had been recommending all along. So even though this wasn't an exciting visit and I finally did see the wound, which wasn't as bad as I had expected, at least we didn't get bad bad news. That came after the visit.

For the first time Leo's (new) catheter did not return blood. This is bad news because we were told it should always return blood, since it goes directly into a vein. That means if there's something wrong, the only option is surgery (to remove it and get a new one, in a new spot on Leo's body). That also means there was no blood test today, which is another bad thing. But we did get an order of TPA again after Houston said to just do the test tomorrow morning. G-d willing this'll work.

The combination of hardly sleeping last night and the surgeon and the home nurse put Leo in one heck of a bad mood today. But he finally took a much-needed nap in the evening and just fell back asleep after yet another drinking binge. I should do the same...

9/18: The Wound, the Decadron, and the Schedule

2006-09-18T20:08:00.000-06:00

The tunneling Leo's wound was doing after the surgery last week seems to have slowed down. At least is doesn't seem any worse and of course we're hoping and praying the whole wound heals very soon. The nurses are still doing daily dressing changes, which seem to be more scary than painful and, again, hopefully the wound heals and this to be a thing of the past, even though it'll leave a permanent reminder -- not that we'll ever need one. To further ensure the wound is healing and not going to give Leo any problems, I made an appointment to see Dr. Schechter Wednesday. He's a plastic surgeon that came highly recommended and should know his way around wounds. We've just had such aweful experiences at Children's that we decided to stay away from there. Every time we've gone there, except for Leo's successful hernia surgery in 2004, it's been bad news. This last time, the surgical staff treated us as if they were doing us a favor. We're still recovering from it.

In happier news, Leo's decadron dose is down a whopping 17%! That seems much more impressive than a 2mg decrease over the past week and a half. He's now at 10mg per day (4mg at 6am, 3mg at 2pm, and 3mg at 10pm). Regardless, Leo seems a little more alert; has started to move his left hand more than before; his voice is starting to return (although not speech yet); he's smiling and even laughing; and generally seems less uncomfortable. These are all baby steps and that's all we want for now.

Speaking of wants, there's something else we want. We want the MRI scheduled for next Tuesday, September 26, to show another decrease in tumor size. I hope that's not too much to ask. Not that it matters, but this MRI turns out to be for Burzynski's BT-11 treatment protocol. I thought we would delay the scan because of last week, but Houston didn't. The treatment, itself, is also slowly increasing after the 3-day hiatus last week. We're moving up very slowly and Leo's on 130mL of A10 and 13mL of AS2-1. I think they'll go up to 150 and 15 tomorrow because today's blood test was fine.

9/16: What a Week...

2006-09-16T17:16:00.000-06:00

This was a very traumatic week; it was probably the worst week since the diagnosis in June. It all started with an emergency surgery Monday to remove Leo’s venous port and debride the ulcerated sore just below. We spent most of Tuesday just waiting at Children’s Memorial Hospital in Chicago. Wednesday Leo went back into the operating room to change the dressing and went home in the evening. Thursday things seemed to get closer to “normality” in our new world order. Leo started back on antineoplastons, but at a lower dose: 100mL of A10 and 10mL of AS2-1.

Friday our home health nurse drew blood from Leo’s catheter, which thankfully returned normal results. More concerning was that the wound in Leo chest was “tunneling.” If the wound, itself, which measures about 1” diameter and about ¾” depth, wasn’t big enough, it’s making its way into the emptiness of the port’s old location. I called Children’s and of course no surgeon was available, so I finally spoke to nurse Teri. She claimed this was normal and even expected. I asked her if we should be doing something different (i.e. better). She asked what we were told to do. I explained the daily dressing changes. She said in that case, we’re doing everything right. So even though I asked the same question several ways, she gave hedging non-answers!

Saturday the tunneling looked bigger. The nurse said it went from about ½” to about ¾”. Progression never seems to indicate a good thing lately, so we paged a surgeon – any surgeon – at Children’s and the first year resident answered that had no answers while we were at the hospital. Although he said the same thing as Teri the nurse, he suggested making an appointment to see Teri the nurse, who happens to be their wound specialist, on Monday or Tuesday. Leo seems to be a merry-go-round of horror with these “doctors.” We’ve already started calling around for other pediatric surgeons, but unfortunately ran into the weekend.

Most importantly, Leo seems to be doing better. Saturday morning we increased his antineoplaston doses to 120mL of A10 and 12 of AS2-1. We are also continued decreasing decadron by another 1mg, so he’s down to 10mg per day! It looks like we may be able to keep decreasing by about 1mg every week or so, as long as his actual tumor symptoms don’t get worse. And if they do and an increase is required, I’ve started looking into all sorts of other, more natural, anti-inflammatories to try to avoid decadron/dexamethasone at almost all costs. There’s also one called Xerecept, but unfortunately it’s in Phase III trials and we’d have to get a compassionate use exemption from the FDA. Another family did get one and said the FDA didn’t get in their way at all, so this may be option we may consider exercising, again, if needed. The good thing about this synthetic steroid, so far, is that it doesn’t seem to have any side effects, or at least nothing like decadron. G-d willing we won’t need to go this route at all.

9/13: Home Again

2006-09-13T20:40:00.000-06:00

Leo had been scheduled for another visit to the operating room this morning at 11am. The reason was mainly for a dressing change, but of course there was the chance of needing another debreading. The first bit of good news was that Leo was taken at 9am and the second was that another debreading was not necessary. The third bit of good news was that he could go home today without needing antibiotics at this point. So far, the preliminary culture results have been negative and we're continuing to pray for this to remain. Dr. Walterhouse, a hemotologist, stopped by in the morning and spent some time with us. Leo's developed some little red spots on his torso and what looks like a rash on his back and elsewhere. Dr. Walterhouse thinks it's all because of decadron, which is what the Houston folks have told us. We took Leo home late afternoon.

We're letting him rest tonight but will be restarting antineoplastons tomorrow, albeit on half the dose, per Dr. Szymkowski's advice. It'll be 100mL of A10 and 10mL of AS2-1. If all goes well, Friday we'll split the difference with the max and increase to 150mL and 15mL. Saturday is the best/fastest-case scenario to be back on the maximum dose.

Leo doesn't have a port anymore and just has a cental line (Broviac). The good news is that without the port, there will be no more Huber Needle changes and the blood draws should be much easier. The bad news is that instead of weekly needle changes, he now has to have daily dressing changes of the wound and no one is willing to predict how long this will take, especially because he's on decadron, which slows the healing process. The people at Children's prescribed Tylenol with codeine (aka Tylenol 3) for discomfort. My thinking is that if he had to be sedated today for a dressing change, "discomfort" is the understatement of the century. The guts of the dressing is iodoform strips. Tomorrow will be our first glance of this stuff, but everyone's described it as very long, narrow ribbons or strips of gauze dipped in iodoform that are packed (stuffed) into the wound with one of those long q-tips. It needs to be in there good and tight to prevent any further tissue necrosis and/or infection so that the wound can heal from the outside in. That whole packing/stuffing is then covered with gauze, tegaderm, tape, etc.

Speaking of decadron, we started lowering his dose on Monday, after the surgery. He's now on 11mg per day (4mg at 6am and 2pm and 3mg at 10pm). Hopefully next Monday we'll go down another notch. Today we filled another decadron prescription and I made the mistake of reading all the side-effects, etc. The FDA won't approve medicines like antineoplastons without a fight, but they let this stuff on the market!? The inmates really are running the asylum...

9/12: Emergency Surgery and Lots of Frustration

2006-09-12T19:50:00.000-06:00

The ball started rolling Saturday, during Leo's visit with Dr. Kroin. She was concerned about Leo's ulcerated sore near the port site and suggested we speak to the surgeon who implanted the port. For the thrush, as Dr. Kroin suggested, we started giving Leo diflucan in hopes of speeding-up removal of this fungus.

Sometime Sunday, the scab on that sore fell off and left things looking bad. To complicate matters, either Leo got a sore throat or the thrush in his throat made drinking almost impossible. So when the antineoplastons started pumping and he got thirsty, instead of the liquids going down his throat they were coming out his nose. Not a good situation for him, so we turned-off the pump. I paged the on-call doctor from the Burzynski Clinic and spoke to Dr. Kubove to see what we should do. She agreed that we did the right thing by stopping the pump and that we may have to wait a day or two until the thrush or sore throat improved. So even though Leo still woke-up a few times that night, we got much better sleep than in the past 2 months.

Monday morning I called pediatric surgery at Children's Memorial and made an appointment for 1pm with Dr. Luck and all her name implies. Dr. Reynolds, who did the original surgery and is now the Head of Pediatric Surgery at Children's, was off. We finally saw Dr. Luck at almost 2pm, after nurse Teri's brief visit. The doctor did not give us good news: the port had to go immediately. The only bright spot was that during the surgery to remove the port they could install a catheter -- identical function, different mechanics. She also said Leo would have to go on antibiotics based on how the site looked. How long? Don't know. How long would it take this wound to heal? Don't know. When would he be able to start back on the treatment? Don't know. How long would his hospital stay be? Don't know. Since her office hours end at 4pm, surgery would be afterwards. When, exactly? Don't know, but we took Leo to pre-op anyway -- there was no choice.

We were visited by nurses; by 2 anesthesiologists (a resident and the real one); and by the surgical resident, Dr. Colleen Jay. She spoke very quickly, tried to skirt around issues, and wasn't used to people (me) telling her to slow down, repeat things, and asking questions. Since that seemed to annoy her, I did it even more... For example, how exactly would we use the catheter? Did its tip have the same size and connection style of the current Huber Needle/Clave connector? She didn't know and said we should ask the anesthesiologists, since they administer all sorts of medicines during surgery, sometimes through these catheters. They had no clue and suggested we ask the pre-op nurses, since we were standing at their station. None of them knew, but suggested asking Dr. Luck, since she does these surgeries all the time. Dr. Luck happened to be walking in our direction. Guess what? She didn't know either. Stated another way, to us it is unacceptable when the people planning on doing surgery on our child answer the connection question by using phrases like "it should" and "probably the same." I don't care how many years of schooling or what G-d like complex they have. Their answers need to be exact and accurate. We finally got a straight answer after we showed the current clave connector, took out a saline-filled syringe, and showed Drs. Luck and Jay how we currently do it (without actually doing anything). Finally we were told the connections are identical and Leo was taken to surgery at about 6:35pm.

The next 2+ hours brought indescribable tension even though we were told the surgery would take at least 1 hour. At 9:02pm, just as the security guard in the surgical waiting room was leaving, we asked if he would call post-op to see what was going on. He handed me the phone and I was told Leo was out of surgery, everything was fine, and Dr. Luck would be coming shortly. At just past 9:30 I called post-op myself and they told me that Leo had only been brought there a few minutes before, was just waking-up (I heard him in the background), and Dr. Luck would be coming shortly. Sounds familiar. Dr. Luck did show-up a few minutes later and took us to see him.

A Broviac Catheter was implaneted on Leo's right chest this time, since the now-removed port was on the left. They also had to cut-away some of the dead tissue from the site where the ulcerated sore/abscess was and culture it. The result was described to us as a serious wound that would take some time to heal, which was going to be slow because of the decadron. How long? Don't know. Leo was also placed on clindamycin, a very strong and broad antibiotic since, again, the port area looked infected and until an antibiotic specific to that infection was determined, clindamycin was it. We were also told that Leo's hemoglobin was low and a transfusion would be need if it got any lower. Then Dr. Luck left and we escorted Leo to room 480 bed 1 in the hemotology/oncology unit. I went home to be with Anna and Nina while Marina stayed with Leo.

Tuesday morning Marina called and said that a transfusion was done during the night. Leo's hemoglobin got below 8 and, again, there was no choice. Of course his hemoglobin jumped to 13 afterwards, which is good. The rest of Tuesday would be nothing short of frustration and borderline anger.

All the Grandparents, Marina, and I were in the hospital most of the day. Several things were supposed to happen:

A visit from Dr. Luck to look at the wound and tell us how to take care of it.
Since we knew Leo wasn't leaving so soon, we asked for a physical therapy consultation.
To try to get Leo back on antineoplastons and to prevent a future transfusion, a consultation with a hemotologist about the possible use of procrit to improve Leo's red blood counts/hemoglobin, if okayed by Houston.

None of these things happened, even though we were promised each!

First, regarding Dr. Luck's visit, we were told various things throughout the day. These included: it was her day off; she was in surgery all day; she wasn't in the hospital at all; etc. Instead, in the morning Dr. Jay, the surgical resident present during the operation, came. She came early in the morning to follow-up on the transfusion. She also came later in the morning and I spoke with her to get details of the lab tests, antibiotics, etc. She was the one that promised Marina to order the physical therapist consultation that never materialized. Instead, a Dr. Fawaz something or other came. He was a nice guy, but seemed to be a lamb sent to the slaughter.

He came early in the afternoon seeking consent for a second surgery to be done Wednesday to further debreve the wound (i.e. remove more necrotic/dead tissue that would slow/prevent healing). We were beside our selves. No one even looked at the wound, but they were already suggesting another surgery, which he claimed was sometimes necessary! I refused to sign the consent until Dr. Luck, herself, saw us, not called as he said she would. He said she was in surgery until about 3:30, but promised that she would stop by between 4-6pm.

Starting at about 3pm we started asking our nurses to page the on-call surgeon. No one returned any pages. At 4:50 I went to the pediatric surgery department and mentioned my frustration to the 2 women in the reception area. They also paged the on-call surgeon, who didn't return their pages either. Then nurse Teri came out and I told her what was going. She said she'd find someone to help. At almost 5:30 she came out and said it was useless for me to wait in their reception area. I should go back to Leo's room and wait for someone to call us. She refused my offer of betting money that anyone would show-up, which led to my diatribe about how I would lose my job if I acted the way they did. I returned to the room and found-out that Dr. Luck called and said they would only be doing a dressing change. It needed to be done under anesthesia because it was going to be painful. A few minutes later, the same Dr. Fawaz something or other returned with the proper consent, which I signed of course. But he couldn't tell us when this would happen, only that the anesthesiologists schedule each day's surgeries. I found Debbie McKenna, the nursing manager, and solicited her help on scheduling Leo as early in the day as possible because the decadron makes him ravenous, but he can't eat 8 hours before anesthesia.

Second, regarding the hemotologist, this didn't exactly happen either. Instead, sometime in the afternoon nurse Stephanie and Dr. Bhatt came. Stephanie is the same nurse that works for Dr. Goldman in his chemo clinic. She is very nice and remembered us. They just wanted to talk to us and get some information, although we never asked for anyone from oncology. Stephanie said she's met Dr. Burzynski and heard of antineoplastons, but nothing detailed. Shockingly, Dr. Bhatt, a fellow, claimed to have never heard of him or antineoplastons! I asked if she had ever heard of Avastin, the only FDA-approved drug for cancer. She said no and that her training had only been in "traditional" therapies. Anyway, they asked for the specific names of the antineoplastons, not just A10 and AS2-1. I offered Dr. Szymkowski's number and, surprisingly, Dr. Bhatt called and got the names (antineoplaston A10 is phenylacetylglutamine and phenylacetylisoglutamine and AS2-1 is phenylacetylglutamine and phenylacetic acid) and some general information. I doubt this will be useful to her or her patients, G-d help them.

Finally, Dr. Luck did start the process of transferring Leo's "care" to the hemotology department, instead of surgery. We're praying tomorrow brings some of the luck that has been alluding us...

9/9: Second Check-up Since Houston

2006-09-09T15:55:00.000-06:00

Leo has been stable over the last few days. The antineoplaston-drink-sleep cycle is now missing the eat component because of the thrush, though. He has been eating very poorly, but getting slightly better. We decided to go to Leo's pediatrician a few days early and went today because Dr. Kroin was available. Things are more or less ok. His weight remains at about 35 pounds. Where to start...top or bottom? Let's go top-down.

The trush in Leo's mouth has gotten a little better, but instead of nystatin the doctor recommended diflucan. We confirmed with Houston that there shouldn't be any issues with the antineoplastons and now instead of 4 times we can give Leo diflucan just once a day.

Next we showed her little red or purple dots that have developed on Leo's torso and are starting to appear elsewhere. This seems to be yet another side-effect of decadron, since his red blood counts are reasonable.

The abscess near Leo's port was of concern. There is a scab there, but it feels soft underneath, as if it's not healing as well below. This is probably because that entire area is always covered with gauze and tape to protect the port and the scab, itself, on which we've been putting antibiotic ointment to prevent infection. So there's very little air circulation there. She suggested taking Leo down to Children's Memorial in Chicago to see Dr. Reynolds, the surgeon who implanted the port. Her thinking is that Dr. Reynolds may be able to move the port, but this would require surgery and all its risks of course. Obviously we're going to do our best to prevent surgery, even if Leo has to be shirtless for a few hours each day with that area without a dressing.

Leo's red butt has now become more pink, so the heavy duty desitin seems to be doing its job. On the other hand, last night we noticed little white spots or bumps on Leo's, as they say, "diaper area." This seems to be the case of the thrush making its way down there. Don't know how, but now we have nystatin topical cream.

In summary:

diflucan liquid for oral thrush
nystatin cream for diaper area thrush
decadron pills for brain swelling
pepcid pills (going to switch to prevacid chewables) against decadron's effect on stomach lining
desitin cream for butt redness
lactulose syrup for constipation
black elderberry extract syrup for immune system boost
colloidal silver as anti-inflammatory
antineoplastons to beat cancer

In our own analysis of Leo's physical condition, it seems to us that decadron has caused Leo's state, possibly more than the tumor:

He started to dislike walking after we started him on decadron after the initial diagnosis in mid June. The radiation people lowered the dose from 10mg to 8mg within a week, but since it had been such a short period of time, there was nothing to gain in either direction.
In Houston his dose was immediately increased back to 10mg and he stopped walking and talking normally, but he was still able to move around and stand.
Once we got home, because of headaches, his dose was again increased by 2mg, to 12mg daily. After this, he basically stopped moving, making "normal" sounds, and sometimes has trouble holding-up his head, etc. Naturally all the other side-effects, like the weight gain/water retention/sleeping trouble/etc., got worse as well.

The point of this analysis is that we need to get Leo off of decadron as soon as possible. At the same time, to help with the muscles and movement, we have an order for physical therapy and are going to start in a few days.

Finally, because Leo doesn't move around too much, he's developed a slight heat rash on his back, so we need to find some sort of bed, mattress, or recliner (which may be ideal) that he can lie on and not be hot and sweaty all the time. He needs some sort of airflow to his back, since he lays so much. The family is looking into what hospices do or products they use. Do you know of anything like this that may help a 35 pound 3 year old?

9/6: A Better Day

2006-09-06T20:42:00.000-06:00

Although today started a bit on the tough side, Leo's day seemed only to get better. In the morning home nurse Candice did a fine job getting blood on the first try, but with a little help from us. I was holding Leo the entire time and had a good chance to peek inside his mouth to see the thrush firsthand. Oh my goodness. It's hard to really describe, so I found a very graphic image here. DO NOT CLICK IF YOU HAVE ANY DOUBTS ABOUT SEEING THIS: http://www.lib.uiowa.edu/hardin/md/cdc/6053.html. I hate to say it, but I think Leo's is actually worse than the large picture. Nurse Marilyn, in Houston, told me today that thrush causes burning when eating or drinking anything warm. Everything started to come together, since Leo's hasn't eaten much over the past couple of days, probably because the warm food burned and hurt. As soon as we heard that, we stopped heating Leo's food and have been giving him stuff straight from the fridge and he's been eating. Fortunately this infection should go away very soon.

My cousin Irina stopped by today to look at Leo's butt and see what's going on down there. She's a nurse in oncology at Lutheran General. Yes, the same Lutheran General. We seem to have a love-hate relationship with that hospital. Anyway, she also thought it was just a diaper rash, so we're continuing to smother Leo's butt with diaper cream.

I was very nervous about today's blood test. Something gave me a bad feeling all morning. Fortunately, that feeling went away the moment I got the results. Sodium is ok; potassium is too good (almost too high); red blood stuff is getting better. All in all, a fine result, so that made it a little easier to concentrate at work.

Now, the most promising observation. When I got home, Leo wanted me to hold him, which I did. He's been pretty "floppy" for a little while, like a newborn whose head and entire body need to be supported all the time. I sat on the couch and held him and noticed that he had both hands on my chest, supporting himself. It reminded me of the time when he was just a baby, doing his first "push-up" from the floor, holding himself up. Although it was only for a few moments, it lasted long enough for me to realize what was going on and point it out. This was very exciting! Afterwards, he wanted to eat some of Granma's cabbage pie, which is much tastier than it sounds. Finally, he didn't mind posing for a picture. He really was much happier than he looks (that's his pump above him):

9/5: It Never Ends, Does It?

2006-09-05T19:49:00.000-06:00

Well, a bunch of relatively small things are all going on at once, but they're slowly piling up. Leo's potassium level is at the lower end of the scale, which is beginning to worry the doctors in Houston and our pediatrician. We're doing our best to give him the potassium-richest foods he'll eat, including soy milk that he seems to drink by the gallon, to get the level up. It hasn't been this low and we have no idea why at this point. His red blood counts are also at the lower end of the scale, so we're doing the same here to get those up. Another blood test tomorrow, so we're praying for something good. I guess the potassium can be helped with supplements, but I don't think they make one of those for red blood stuff...or maybe they do?

Marina's been wiping and rinsing Leo's mouth with the nystatin for the thrush, which is hardly even noticable. We were told to throw-away Leo's old toothbrush, get new ones, and not use them too long because they can re-infect. Turns out that swallowing the nystatin is actually a good thing because if this is on his lips and in his mouth, it's also most likely in his throat. Good grief!

And if that's not enough, his little butt is pretty red. We've been putting calendula cream on it, but it isn't doing too much, so we've upgraded to the thick, but creamy Desitin. Sound yummy? No. It's for his butt.

On a brighter note, the folks at HIT Entertainment, Veronica and Tracey specifically, came through with an amazing box of presents for the kids. This is the company that markets and distributes various kid characters and brands, which I think covers PBS Sprout for the most part. They sent Thomas the Tank Engine and Bob the Builder toys, videos, games, and even vitamins! I originally asked them to send a warehouse-full of stuff to the Burzynski Clinic in Houston for the kids down there and I guess we got some leftovers. Thanks HIT Entertainment -- take a look at the list of kids on this page. I'm sure they'd love some stuff too!!!

9/4: Symtpoms Getting Slightly Better

2006-09-04T19:14:00.000-06:00

Leo just fell asleep after a pretty good day. Every day, his swallowing seems to be getting ever so slightly better, as is use of his right arm. Now that I have a few minutes, I finally have a chance to upload the July and August MRIs. The August image on the right looks smaller to the naked eye, I think, mainly because the magnification seems different. Per the Parkside MRI report, I think I uploaded the correct images, even though they seem different. Regardless, the professionals here and in Houston have spoken.

July 2006	August 2006

We are also getting more serious about supplements to help Leo's immune system; help relieve some of the swelling and try to hurry along the process of weaning him off of decadron; and general strength and health.

We'd started giving him elderberry extract in Houston and are now giving it to him -- and Anna and Nina -- daily. I think it's supposed to help the immune system. We're also giving him colloidal silver, which is supposed to relieve swelling and inflammation. And today we got the juicer out and made some fresh juice from just about everything: apples, carrots, beets, watermelon, canteloupe, pomegranite, etc. Leo and I enjoyed it, but Anna and Nina snubbed their little noses and refused. I think we'll just have to stop buying juices and make our own to get them to drink these, which were absolutely delicious.

The only bad news is that Leo seems to have developed a mild case of thrush, basically uncontrolled fungus in his mouth. Click here to read more about it, although the picture in this link is much, much worse than Leo's. So we picked-up a prescription to treat this: nystatin, 4 times a day for 10 days...

9/3: No News is Good News

2006-09-03T19:44:00.000-06:00

Leo seems to have had a good weekend. Generally his symptoms have been stable. Maybe some of the symptoms are a bit better, like swallowing. He definitely swallows thin liquids better and uses his right hand ever so slightly more, although it's still far from perfect. Leo spent almost half of today outside. First he went for a walk with Marina and then, after not wanting to go back inside, sat in the back yard propped-up by some pillows until dark. This is the longest he's been outside in quite a while, but with such a beautiful day, how could we even consider cooping him up indoors?

I've been trying to post the MRI pictures, but just haven't had time. Last night was absolutely brutal, with virtually 0 hours of sleep. I'll definitely try tomorrow.

8/31: Staying the Course

2006-08-31T13:29:00.000-06:00

I finally got a chance to scan and upload the letters we received from Dr. Chang (the radiation oncologist) and Dr. Goodell (the pediatric oncologist), both from Lutheran General Hospital. Click on a bullet below, then scroll to see the letter and click on it to see a larger image and read their handiwork.

I spoke with Dr. Szymkowski today, who said that even though the 6% reduction reported yesterday was not uncommon, it was still very encouraging news. Leo's next MRI will be during the last week of September.

Regarding treatment, Leo started the maximum dose of both bags yesterday. For those keeping score, that's 210mL of A10 and 19mL of AS2-1, for a grand total of 229mL of antineoplastons per treatment. The A10 runs for 2 hours 48 minutes and AS2-1 now runs for 16 minutes. So out of every 4 hours, Leo gets 3 hours 4 minutes of medication.

Leo's mood seems to have been a little better over the past few days. His swallowing also seems better. We think those "symptoms" were really a cold he caught from Anna and Nina. Even thin liquids don't give him as much trouble. Speaking of the girls, they still get antsy when I drop them off at daycare in the morning. They insist on multiple hugs and kisses, which of couse I provide regardless whether I'll be late for the (late) train, but at least they don't cry anymore. When they come home, usually one of the first things they do is run over to Leo. Nina was trying to give him something to drink the other day and Anna brought him a blanket. He just smiles and laughs at them.

Leo and I made a deal. I told him yesterday that the doctors from Houston called and said that the medicine is helping him. He nodded in agreement. So I told him that when he gets better he and I will go to a store and buy a couple of big shovels and dig up (his favorite activity) the back yard. He nodded no, which surprised me. Then I realized that he wants to dig-up the back yard on his own and when I said that to him, he smiled and agreed. What a character.

Heard some good news about Leo's fellow warriors. Chase is home and doing better and James' infection seems to be under control. Hopefully everyone will end the week on a high note!

8/30: The Call

2006-08-30T13:06:00.000-06:00

The tumor seems to be 6% smaller as measured by the Parkside MRI radiologist (i.e. not the Houston folks -- that's still in the works), Dr. Barry M. Rabin, in the following report (emphasis is my own):

CLINICAL HISTORY: Brainstom glioma. Comparison 07/15/06.

TECHNIQUE: Multiple sagittal, axial and coronal sequences were performed through the brain both pre and post intravenous gadolinium administration. The exam was performed with anesthesia provided by Dr. Gonzalez.

FINDINGS: There is diffuse abnormal signal and marked swelling of the pons consistent with pontine glioma. The pons appears slightly decreased in size compared to prior exam currently measuring 3.6 (width) x 2.5 (AP) x 3.1 (height) cm. On prior exam, the mass measured 3.7 x 2.7 x 3.3 cm. The fourth ventricle also appears to be less compressed. This is best demonstrated on axial T-2 weighted sequence image number 8 compared to prior exam axial T-2 weighted sequence image number 7. There is a different enhancement pattern of the tumor now with a ring enhancing portion within the left side of the tumor. The ring enhancing portion measures approximately 9.0 mm in greatest diameter. The vast majority of the tumor does not enhance with contrast.

There is a diffuse supratentorial brain volume loss that has progressed compared to prior exam. There is no hydrocephalus. There is no pathologic extra-axial fluid collection. There is no herniation.

IMPRESSION: There appears to be slight decrease in size of the pontine glioma compared to 07/15/06 with slightly less compression of the fourth ventricle and minimally decreased size measurements. There is a slightly different contrast enhancement pattern of the tumor compared to prior exam of uncertain significance.

8/29: MRI Done Today...Results Tomorrow

2006-08-29T19:53:00.000-06:00

Although Dr. Gonzalez showed-up about 15 minutes late to Leo's MRI, he had a good excuse: surgery. Leo's MRI went without a hitch and we were out of recovery in record time. This process started last night, at about 10:30, when the last dose of antineoplastons ended. I disconnected and turned-off the pump and Leo woke-up only once at night, just before 2am. He was hungry, but not thirsty. I gave him a little something and after going back to sleep we all woke-up at 6am. Leo was absolutely ravenous, but with only 3 hours to go until the MRI we couldn't give him anything to eat. So those last few hours leading up to our brief visit to Lutheran General weren't good ones. Afterwards, of course, Leo ate and ate. I think he only had one meal today -- it started at about 11am and ended recently at 8:30pm!

We got 2 CDs with the MRI scans on them. One is already on its way to Houston and will arrive tomorrow before 10:30am via UPS. I should also be getting a call afterwards with Dr. Khan's or Dr. Dolgopolov's analysis. I have a feeling that at about 10:35 I will be calling them! The other disc is here, at home. Needless to say, I looked at it for a while today. Tried to compare today's to the previous one, but just couldn't. Some things seemed to look better (not sure exactly what that means). Other things, maybe not (again, not sure). So we don't really know because nothing was obvious. Are bright areas good? Are dark ones? That's probably why radiologists make the big bucks (right, Lisa? :) Thought I was anxious for today...I'm really anxious for tomorrow.

Leo's mood today was very good (so I'm not expecting much tomorrow). He even tried to sit-up a few times when he was laying down. I don't know what this means, other than a cure being in the works. I'm not making-up or seeing anything not there, but there are signs of hope all around Leo.

Stan the Man came through with someone familiar with the FDA and its rigmarole, in light of those U of I chemists' discovery I posted yesterday. No surprises there. It's very difficult to even get a Phase I trial, never mind Phase II, or consider children -- they seem to always go last when it comes to these things. But even if those chemists are on the right track, unfortunately at this point there's nothing there except interesting research. Besides, Leo will be cured by the time they're ready! Speaking of cure, one of Leo's fellow fighters, Chase Sammut, is hope from the hospital and things are looking up! James Neubauer is still fighting the infection and hopefully will be home shortly.

Last, but definitely not least, thanks to everyone for the e-mails, letters, calls, and other support. Leo's grandparents, who are definitely putting in as much overtime as humanly possible, deserve a special tribute and we know there's just one form of thanks they, and everyone else, want.

8/28: Preparing for the MRI

2006-08-28T21:53:00.000-06:00

Yesterday was a good, fairly uneventful day for Leo. Today seemed to be an even better one. Leo smiled and laughed and even make a joke! So all in all, a good day. Anna and Nina were buzzing around Leo like a couple of little bees tonight, giving him something to drink, bringing him a blanket, stroking his arm, and talking to and playing with him. They are such sweet girls. But not such a good day for the home nursing we've gotten from OptionCare, so I've already made calls to other agencies to see who else can do pediatric home health. I really can't believe this...

It started last night when nurse Gail called to tell us that she would be at our house between 9:30am and 10:30am. I told her that our agreement was for 9am. She said she'd have to call the supervisor because there was no way she could be here by 9. Fine, I said, do whatever you need, but someone better be here by 9. She called back and said she would try to be here as close as possible to 9am, but it would still most likely be 9:30! Was she for real -- what part of "9" did she not understand!? I told her to call back her supervisor and get someone else because 9am was the only option. She called back a little later and told us, sure enough, that she would be here by 9, and she was. But this turned into a case of "careful what you wish for, it might come true."

Nurse Gail showed-up right on time, but that's about the only thing she did right. I had disconnected Leo's pump earlier, flushed the port with saline, then heparin. Since our return from Houston, the port hasn't given us too much grief. Nurse Gail, though, got grief. She couldn't get a blood return no matter how hard she tried, which wasn't very hard. She was only getting the saline and/or heparin return (mixed with a little blood) that she had been using to try to clear-up a potential clot. So after only a couple feeble attempts she just gave up and left, telling us to call the nursing supervisor to get someone else to come.

Surprisingly a few hours later, I got a fax from the lab with today's results. How could this be? I thought there was no blood to be gotten. A few minutes later, I got a call from Dr. Szymkowski (who calls herself Dr. Barbara for obvious reasons), frantically asking me what was going on. "With what?" I asked. She told me to look at the platelet count: 10,000. The "normal" range was from 150,000 - 400,000, and Leo was in the range Friday. I immediately understood what Gail had done: she dropped-off the mixture of blood, saline, and heparin to the lab! While I had Dr. Baraba on the phone, I asked for an order of TPA, since the port didn't work in the morning, and had the order faxed in just a few minutes. Later, Dr. Kroin also called frantically asking the same question.

After a few explatives that may have annoyed my neighbors at work, I called the nursing supervisor and got our usual home health nurse to come in the evening. But she said the TPA would be delivered tomorrow. What!? What was the point of someone coming tonight, when we know the port isn't working!? I said the nurse should pick-up TPA on the way to our house. To make a long, painful story just a little shorter, the TPA was couriered over just as I got home; Candice showed-up at about 7:30pm to draw blood -- and did so successfully, without needing TPA; and I go the perfectly normal (290,000) results at about 10pm.

I just disconnected Leo in preparation for tomorrow's MRI, which will be at 9am CDT. We'll be praying for the scan to show that the treatment is working and even though the symptoms have gotten worse, it's because of tumor breakdown. On the prayer front, please pray for two other children fighting similar battles: James Neubauer, who's in the hospital with an infection, and Chase Sammut, who was in bad shape in the hospital, but now seems better.

Finally, a request to anyone with any kind of "connection" -- regardless how many degrees of separation -- at the FDA. I read an interesting article today about chemists at the University of Illinois at Champaign, who have discovered molecules that cause apoptosis (programmed cell death) in cancerous cells, while leaving healthy cells unharmed. This is similar to the theory of Dr. Burzynski and they unknowingly compared their research to his (one of the genes that Dr. Burzynski targets is the p53 gene and these guys claim their method works faster and more reliably). The link to their research is here: http://www.scs.uiuc.edu/~phgroup/publications.html. It's the information under section 39, currently at the very top.

I sent an email to professor Paul Hergenrother, the leader of the research it seems, and got exactly the answer I thought I would get: this is all pre-trial, meaning they're still testing this on lab rats, not humans. Having read about the speed (or lack thereof) at which the FDA functions and the absolute lack of time that Leo and other children have, we need to get the FDA off their duffs and fast-tracking this research. Not that Leo needs to be a guinea pig, but they claim the toxicity is quite low, so more time shouldn't be wasted -- they discovered this in 2003!

8/26: Symptoms Seem Stable

2006-08-26T19:41:00.000-06:00

Leo spent most of today at his Grandparents' house. He was generally in a good mood and the symptoms seem to have been stable, meaning not any better or worse. Once he got home, though, he asked to sit on the floor and smiled a lot. We have to support him completely when he's sitting because he's basically like a newborn. Of course he ate and drank, and we're trying to be more careful on the swallowing. Solids are still more or less ok, but thin liquids like water and juice -- which he prefers during drinking binges -- do cause more coughing than before. Coughing isn't the real issue, though. Getting pneumonia from liquid that accumulates in his lungs, even from tiny droplets when he coughs, is the real problem. Maybe we need to whip out that nasty can of ThickIt.

One bright spot happened on the way home. Leo told me where and how to drive. He has a preferred way of getting home and starts pointing at the street as soon as he realizes it's coming. When I respond by saying that yes, of course I'll be taking that street, he grins from ear to ear, but still holds-up his little finger to ensure I don't go the "wrong" way. What a character...

8/25: MRI #4 Scheduled

2006-08-25T21:34:00.000-06:00

The folks in Houston suggested we move-up Leo's first MRI on treatment mainly because of the symptoms. They -- and we, of course -- want to find out what's going on. So Granpa Leonid (the Medical Maze Master) scheduled the MRI for 9am on Tuesday, August 29 at Lutheran General Hospital. This will be Leo's third MRI on that equipment, so we'll definitely be able to compare and contrast to previous MRIs.

A reminder to self: disconnect Leo at about midnight or so because he'll need to be sedated, which means he needs to be off treatment for about 8 hours, since he can't have anything to eat or drink. Maybe, just maybe, everyone will be able to get a decent night's rest, especially Leo.

Otherwise, Leo's blood tests this week have been good, with normal sodium and potassium levels. His hemoglobin has been on the low end, but we've started giving him more red meat and other products that supposedly help hemoglobin levels (i.e. food with iron). We actually saw a slight increase, so we'll continue doing what we've been doing. Regardless of hemoglobin, since the sodium and potassium levels have been fine, we're getting closer to the maximum dose of antineoplaston AS2-1. I've been cleared to increase it to 18mL -- just 1mL to go! At this dose, it'll be pumped for 15 minutes per cycle. So both antineoplastons now add up to 228mL, pumped for 3 hours and 3 minutes out of every 4 hours throughout each day.

8/24: Symptoms Getting Worse

2006-08-24T20:21:00.000-06:00

Even with the recent increase in decadron, Leo's symptoms seem to be getting worse. He has more difficulty swallowing thin liquids and isn't opening his mouth as wide. Although he did yawn a few times -- something we haven't seen in a very long time. So we want to move-up his MRI, which is currently scheduled for September 2, to earlier in the week. I asked Dr. Szymkowski again today what all this means. She repeated that if the decadron increase helps, it's "just" swelling. If the decadron increase doesn't help that much, something is going on with the tumor. Would the MRI give them an idea of what specifically may be going on with the tumor? She said it should -- they will be able to tell whether the tumor is growing and becoming more active or whether it's breaking-up and dying. It's obvious for which option we're praying.

OptionCare claims to be coming through. Both the home health nursing supervisor and the home health nurse said that on Mondays, Wednesdays, and Friday, when Leo has blood drawn (and the Monday needle change), the nurse will show-up at 9am. I told them this is the last time we were having such a discussion. In the mean time, I've started getting a list of independent home health nurses who live around us, just in case.

8/23: The Sticky Stuff

2006-08-23T21:06:00.000-06:00

It seems all of OptionCare had today off, except for Cathy the nurse. I left a voicemail for Michelle and will call her again tomorrow with my ultimatum. Nurse Cathy was nice, was prepared, knew what she was doing, and was fast. So far so good with Leo's port. I think I figured out what the problem has been with the blood draws. It isn't his blood clotting, although that of course may have something to do with it. I think it may be the antineoplastons. First, both antineoplastons are goopy and sticky (Leo's pee is even sticky). Second, until recently there were long gaps between treatments, which now last over 3 hours in total. So there was a lot of time between treatments for the sticky stuff to clog the port, needle, etc. Now that it pumps almost non-stop, I think there isn't enough time for stuff to stick together and cause problems. Well, it doesn't really matter as long as a the port keeps working and the blood keeps coming.

Leo's symptoms aren't getting any better. In fact, maybe they're again a bit worse, like the drooling that's slightly started and the coughing while drinking. I honestly believe that it's because something good is happening with the tumor. We were told several times that things may get worse before they get better because the tumor first breaks-up. That causes more swelling. Then the cancerous cells die and get cleaned-up by the body, which of course reduces swelling. Obviously we want this to happen asap, but we're willing to wait for good news. Another "symptom" that's really related to the combination of decadron and thirst is the utter lack of sleep. Leo now takes little naps throughout the day. The decadron causes sleep issues in the first place and the antineoplastons make him so thirsty that even when he does fall asleep he wakes-up for a drinking binge. So the regimen is very, very tough, but we are committed to the treatment and are going all the way. We'll get plenty of sleep I'm sure when he's cured.

8/22: Last Chance for OptionCare

2006-08-22T20:33:00.000-06:00

I don't know whether it's OptionCare the company or if it's the nurses themselves, but we are almost at wit's end. I thought I was clear when I first arranged this: each day same time, same nurse. So far, we've met Candice, Gail, and Cindy, but tomorrow are going to meet Cathy because Candice is off, her sister Gail can't make it during the time we need, and Cathy is the one that's available. Tomorrow morning I'll be calling Michelle Reed, the nursing coordinator at OptionCare, with an ultimatum: each day same time, same nurse. I know it'll be difficult to find another company to do this, but at this point I'm thinking of calling independent home nurses and finding a set of 2 or 3 that live around us who work with children. What's more, they've been running tests on the wrong days. Dr. Szymkowski called today asking why a CBC wasn't done Monday, so she's rewritten lab orders for Mondays, Wednesday, and Fridays to ensure that these nurses get their acts together.

Leo seemed to be in a decent mood today, although he didn't sleep at all last night. The decadron 3 times daily is really doing a number on sleep for all of us, unfortunately. His dosage is now 210mL of A10 and 17mL of AS2-1. Symptoms are getting better, but they also aren't getting worse. We're just hoping things are getting better inside.

8/21: An Average Day

2006-08-21T21:32:00.000-06:00

Today started as most Mondays: Huber Needle change. I can't say Leo's used to them, but between our being "ready," plenty of Emla cream, and the home health nurse seeming to know her job fairly well, the process is done very, very quickly.

Right after this, Anna fell and hit her forehead very hard on the corner of a kiddie table. Nevermind the goose egg, she cut herself in the process. She cried mainly because of the ice pack, not so much from the pain it seemed. Nina cried for sympathy. Of course we were worried all day, but by evening the swelling had gone and just the cut remained. She had no balance issues, didn't cry, didn't sleep more than normal, drank, ate, played with the same little attitude of hers, and generally seemed ok. Obviously Marina kept a very close eye on her while I was at work.

Now we're focusing on Leo's hemoglobin. It's been on the low end of the scale and we want to get it back up. Lean red meat, pomegranite juice (I called it Daddy's Juice to trick him into drinking some), and more veggies. Any other suggestions? Marilyn and Dr. Szymkowski said an iron supplement may be needed if it gets lower, but obviously we're going to try to fix this with diet first. Another Eastern European "remedy" for increasing hemoglobin is caviar. Unfortunately caviar has enough salt to kill a horse, so we can't even consider this.

Leo's dose remains the same at 210 and 16, but will go to 17 tomorrow.

8/20: A Better Day

2006-08-20T21:25:00.000-06:00

Today was better than yesterday for Leo. He sat on his favorite Batman chair this morning and had brunch with everyone. While most of us ate lunch, Leo started with breakfast and continued eating through lunch! He asked to go outside a few times and went for a walk in the stroller with Marina in the morning and to the park with Anna, Nina, the Grandparents, and I in the afternoon. The park visit didn't last long, but at least we got out a few times during such a beautiful day. We're realizing that Leo is basically on a roller coaster. Each bad day seems to be followed by a better day, so we aren't expecting a lot tomorrow.

The Clinic today suggested increasing Leo's dose of AS2-1 to 16mL. We're going to go up every few days by 1mL at a time now, instead of 2.5, until we hit 19mL. This antineoplaston makes him sleepy and the point is to keep him awake to ensure he drinks plenty to keep his sodium level normal.

Tomorrow is another Huber Needle change day. Last time is when the abscess was discovered near the port site. With the daily dressing changes and antibiotic cream, the abscess looks much better. At this point, there's a scab about the size of a dime. Although it isn't oozing much anymore, it seems we're going to have to continue to daily changes for at least another week or so to ensure it's fully healed.

8/19: I had a Dream Leo was Walking

2006-08-19T20:44:00.000-06:00

Today Leo's symptoms seemed slightly worse in the very early morning (before decadron) and late evening (also before decadron). He was drooling a little bit, seemed to be alternating fixation in his eyes, coughing a lot while drinking, and so on. He didn't complain of headaches. I relayed this to nurse Marylin during our morning talk, and then Dr. Szymkowski called. She started by recommending we space-out the decadron doses. Instead of giving 5mg every 12 hours, to give 4mg every 8. So another slight increase. Clearly, and we were told this initialy, decadron is heavily used to control symptoms. In addition, she said one or two things may be happening (although I'm not positive I got this right, so I'll ask again tomorrow).

First, if the symptoms get better, that may be a sign that there's just increased intracranial pressure from all the antineoplaston fluid that's being pumped into Leo, which causes more swelling. The antineoplastons seem to cross the blood-brain barrier and at the current doses he's getting 1,260mL of A10 and 90mL of AS2-1, for a daily total of 1,350mL. Obviously not all of this gets into his brain, but probably enough to cause some swelling. Second, if the decadron doesn't seem to help too much with the symptoms, that means "something" is happening with the tumor...

For the first time, I heard the following in relation to Leo. She said the tumor may be breaking down. Unfortunately in the same sentence she said that it may also have increased its own evil activity. The evil portion seems unlikely because these symptoms occurred virtually overnight and even this aggressive tumor doesn't grow that fast. Logically (but no one said these damned tumors are logical) that gives us hope for the best-case scenario: the antineoplastons are working. Marina and I believe this is the case. We won't really know for sure until the MRI in September (or possibly the one in November), so until then we just have to keep Leo on treatment and ensure his symptoms are controlled, even if that means more decadron.

Last night, during one of my countless nap breaks between Leo's drinking binges, I had a dream. I dreamt Leo was walking. He was off the decadron and looking like he used to (i.e. skinny). He was walking perfectly normally, but I did see he was still connected to the antineoplaston bag and pump via the IV tubing. He was walking on grass and it was warm because he was wearing a red t-shirt with a blue iguana on the front, blue shorts, and his favorite Thomas the Tank Engine gym shoes -- all clothes he owns. We'd love to see this soon or on a nice, warm day in the quickly-approaching autumn, but even next summer or the one after is fine, too. As long as he's going to make it, there's no rush.

8/18: The Port and the Antineoplastons

2006-08-18T21:23:00.000-06:00

Today's home nurse visit was in the evening because she's on call all night and wasn't working in the morning. This was ok since Leo spent a nice day at the Grandparents'. Unfortunately his port wasn't cooperating when she came. It was flushing (going in), but not returning blood. Even heparin didn't work and we were getting ready for TPA. She suggested we leave the heparin for a while, while everyone got something to eat. Smart lady. When she returned from her dinner, voila, blood. Sorry Genentech. The only bad news is that it's already been a couple of hours since the blood draw and even though the order said stat, I doubt I'm going to get the results faxed to me tonight.

Antineoplaston AS2-1 has gone up by 2.5mL. Leo is now getting 15mL per cycle, which means it pumps for about 12 minutes, up from 10. The A10 is now at the max. Hopefully this increase in AS2-1 will enable Leo to sleep a little more/better (and us, of course), since it has a sedative effect. We saw that in a big way in Houston, especially after the last increase, to 12.5mL. He was very, very sleepy at first but then built-up a tolerance.

Yesterday we realized that we were running out of decadron. Today I asked the folks in Houston to call in a prescription for 5mg tablets to the Osco Drug pharmacy across from my work. They said they didn't have it and referred Dr. Szymkowski to the CVS, "a block away." She called Marina at home to tell her about this pharmacy switch and their phone number. I called and was told that no one makes 5mg tables. Only 4mg and 1mg were available, which were ready for pick-up. I went to this CVS "a block away," but they had no idea who I was or why I was there. To make a long story short, I had to leave work early, run in 100% humidity/rain, and still missed my train. But I got Leo's decadron.

Marina came-up with an interesting way to bathe Leo, since he doesn't like baths anymore. Instead of one of us holding (me) holding him and praying that the other one (Marina) works quickly, she sat him in his little Batman chair. It has a metal frame and cloth back and seat, which means it dries quickly. It also seems comfortable for Leo, since he now has a morning ritual of sitting in it in the kitchen for breakfast. Anyway, he still didn't like the bath that much, but it was much easier and less stressful -- for everyone.

8/17: Maximum Dose of A10

2006-08-17T20:16:00.000-06:00

In a few minutes I will be preparing the bags, tubing, and pump at the maximum dose of antineoplaston A10! This is a huge milestone for Leo. He's been such a trooper and we think he's doing better at home -- not that Houston was so bad. Starting tonight, though, he will be receiving 210mL of A10 every 4 hours. At about 75mL per hour, this bag will be pumping into Leo for almost 3 hours! If I remember correctly, the second bag of antineolaston AS2-1 will be increased Saturday to 15mL, which means only 4mL more until he's at the max of AS2-1 as well.

The abscess near Leo's port seems to be getting better with the daily dressing changes, antibiotic cream, and cephalexin. We're still working on getting a "routine." The only one we have right now is not sleeping, although Marina does more of that than I. We still have mini-battles to get Leo to take the decadron and antibiotic, but we're finding ways. He's let his guard down a little so we've been able to trick him, which is something no one's been able to do in about a year. We need to schedule Leo's September MRI before it gets too close to the date to ensure we don't have issues being first that day. We're not expecting a lot at this point. Maybe we'll be able to start reducing the decadron by then, though...

8/16: Almost There

2006-08-16T20:20:00.000-06:00

Leo's blood test was good today, so we increased the dose of A10 to 205mL. Just 5mL to go until we hit the max! Then we focus on getting to the max with AS2-1. He's still taking the antibiotic (about a week left) and, of course, decadron. I spoke to Marilyn today, who was surprised we only have 3 bags of AS2-1 left, but will have some FedEx'd to us asap.

These silly home health companies can't help but send us more boxes with junk their nurses hardly use. We have so much saline and heparin syringes, as well as alcohol wipes, I think we're going to start selling them on eBay to raise some money! Speaking of home health companies and nurses, Marina and I almost jumped out of our respective skins today when the nurse showed up seriously late for Leo's blood draw, even though we called every few minutes to find out where she was. Before our first appointment, when I was arranging all this, I told her and her company, OptionCare, that we have a zero tolerance policy -- come hell or high water, whoever is assigned to us is coming on time because Leo can't be off treatment. She's outta here and a new nurse will be doing Friday's blood draw.

Leo was great this morning. He asked to sit in his little Batman chair and have breakfast in the kitchen along with Anna and Nina. This was so nice to see! The girls were like little flies and couldn't sit still for a second, while Leo laughed at them, probably thinking how he used to be like that and looking forward to it again in the future.

8/15: Increasing A10 Dose

2006-08-15T20:02:00.000-06:00

Based on yesterday's blood test, Marylin today said that we should increase Leo's dose of A10 to 195mL. That means only 15mL to go until he reaches the maximum of 210mL! She said they want to reach the max dose on this bag first and then move onto the second bag (of AS2-1). That dose is currently 12.5mL and the maximum is 19mL, so it's almost there as well. It also looks like we didn't get enough of the AS2-1 bags, since there are about 13 of A10 and only 3 of AS2-1. Will have to order some, stat!

More fun with home health. Yesterday the ER doctors told us to change Leo's dressing (tape and gauze over the Huber Needle) daily, the home health company said they could have a nurse come for about a week, which is the anticipated duration of these daily changes. Candice came at 8am today for this and proclaimed she was only here to teach us how to do this and that she wouldn't be coming daily. She just wants to come for the blood draws. Given our completely chaotic life right now, I set her straight and told her that we'd be glad to watch, but she would be changing his dressing, not us. After all, isn't that her job!? Also, even though it's just replacing a big chunk of tape on his chest, neither Marina nor I want to make Leo any more uncomfortable than he already is -- let her be associated with that. Fortunately it didn't take long at all to convince her, but it was still an annoying way to start the day.

Speaking of schedule, Marina and I now divide all the work as evenly as we can. We take turns getting up every 3-4 hours at night, whenever Leo wakes-up for a drinking binge. I take care of hiding the 2 decadron pills (4mg and 1mg) in something edible and ensuring Leo eats it, while Marina makes sure he takes the antibiotic. All the Grandparents are still working overtime and helping every which way possible...

8/13: Another Quickie at the ER

2006-08-14T20:39:00.000-06:00

The home health nurse had 2 objectives today: draw blood and change the Huber Needle. Unfortunately only the blood draw objective was met. When she took out the old Huber Needle she noticed some sort of abscess near Leo's port. I called the Burzynski Clinic and spoke with Dr. Szymkowski, who suggested we have it checked-out either by Leo's pediatrician, who left for a 2 week vacation, or the ER. So Marina took Leo to the Lutheran General ER. Fortunately it wasn't anything terribly serious (or maybe we're getting used to ER visits), but again Leo was given cephalexin, the antibiotic. The dressing over the needle needs to be changed daily for a while and to use an antibiotic cream just in case. So the home health nurse will come each day for about a week to take care of this. A new Huber Needle was placed and they were home in just a couple of hours and back on antineoplastons. Most of the above happened during my first day back at work, so the late afternoon was a very nervous one.

8/12: Staying the Course

2006-08-13T20:32:00.000-06:00

After yesterday's decadron increase Leo stayed the course today. Drink, eat, drink, sleep, repeat. Marina took all 3 outside this morning while I tried to make-up for some seriously lost sleep last night and Leo seemed to enjoy being out more than Anna or Nina. In a nutshell, we thankfully had an uneventful day, other than a new babysitter starting to help while I'm at work. Leo even took a liking to her because she was "warned" not to be too aggressive and just stay back for a while. This strategy seemed to work because Leo eventually "let her" feed him, give him something to drink, read some stories, and even change his diaper! What a character! Anna and Nina still come by and talk to him and give him little toys or something every once in a while. They are such sweet girls.

Tomorrow will be my first day back at work. It will also be Huber Needle change day and a blood draw and we're praying both are uneventful.

8/11: A Decadron Increase

2006-08-12T21:32:00.000-06:00

After a restless night, Leo's symptoms seemed to get slightly worse today. He seems to have started having minor headaches recently. I think his first headache was actually on our way to the airport in Houston, when he started crying in the car, but we couldn't figure out why. He started the same crying in the car on the way home, after we arrived in Chicago. I finally asked whether he had a headache and he said yes.

This morning, Leo started crying and touching his right temple. He isn't really using his left arm, so it's hard to say whether it was really on the right or left. Regardless, when we asked if he had a headache, he said yes. I immediately called the Burzynski Clinic and spoke to the on-call doctor, Dr. Alam, I think. He told us not to worry because headaches, it seems, are common for people with brain and brain stem tumors. This made sense. He said that unless Leo has a headache that doesn't stop, starts vomiting, or becomes somnolent (constantly sleepy) we shouldn't worry (more than normal). At the same time, we should increase decadron to 10mg per day, up from 9mg, to help with symptoms like this. But we worried all day while Leo spent some quality time at the Grandparents'.

It wasn't very long ago when it was next to impossible to take Leo out of the bathtub. He spent hours in the tub, freezing in water that had gotten cold (well, maybe not cold cold) and then argued when getting dressed. Now bathtime is a nightmare. He despises being undressed, probably because he thinks something unpleasant is coming his way. While I hold him, covering the dressing in his chest, Marina (and Granpa in Houston) washes as fast as possible. If that's not bad enough, washing his hair is even worse. Afterwards though, dressed and calm, Leo ate and drank and finally fell asleep. He didn't sleep well last night and didn't nap much during the day, so we're hoping for at least a little sleep tonight -- for all of us. And praying for a good day tomorrow.

8/11: Leo's First Restful Day in Over a Month!

2006-08-11T21:35:00.000-06:00

Yes, it's true. Leo has been in a hospital, clinic, doctor's office, or airplane every single day for the past month or so. Not today. We did have home nurse Candice from OptionCare come in the morning (early!) to draw blood from the port, which worked without TPA, but that was fast and painless. So Leo was in a much better mood because he finally got a chance to rest a little bit at home. We drank, watched television, drank, ate, slept (yes!), drank, and just had a nice day. Granpa Leonid came over and went for a nice walk with Leo -- the weather in Chicago has been perfect since we returned.

I made copies of the lab orders and per Leiann's excellent suggestion put STAT at the top, as well as all the fax numbers, etc. The results, all good, were faxed to everyone exactly 2 hours after the draws, so our local lab and home health nurse seem to have their acts together!

Leo's moving up to 185mL of antineoplaston A10 and staying at 12.5mL of AS2-1. That means he'll be at the maximum dosage on both bags within a week or two. Also, two other children, Justin and Gus, had fantastic news this week of the antineoplaston treatment seeming to work!

I finally had a few minutes to add the image from the original MRI on June 19, 2006, showing Leo's tumor.

8/10: Everything in Medicine is About the Money

2006-08-10T21:33:00.000-06:00

We saw Leo's pediatrician, Dr. Kroin, today. Leo wasn't excited though. Afterwards I tried to schedule a home health place to send a nurse to us Mondays, Wednesday, and Fridays to do a blood draw from Leo's port. I lost track of the number of companies I called! The vast majority said they don't work with children, which I find hard to believe. The rest claimed that unless we purchase their supplies and/or use their IV infusion services, they wouldn't send us a nurse! All seemed shocked that I was calling, instead of a hospital person. So I finally called the 2 companies with whom we've dealth in the past: Coram (used for the antibiotics) and OptionCare (scheduled for us just after Leo got the port).

Coram checked and checked and finally the scheduling supervisor called me back past 6pm to tell me they won't do this because we aren't purchasing or using the IV infusion services. OptionCare started the same way, but when I told them that we never purchased anything from them, but still had a nurse offer to come (this was the smoker that didn't show-up), they checked their computers and said they'd send a non-smoker starting tomorrow. Incredible.

The one place that was reasonable today was the lab at Glenbrook Hospital. I came there, registered Leo for a standing lab order, a copy of which still has to be brought by the home health nurse when dropping off the samples, and left within about 5 minutes.

We're still trying to figure-out a reasonable schedule and routine for Leo. He hardly slept last night and kept Marina up most of the time. We've kept him on treatment the entire day and had our first call with Marylin from The Clinic. One problem that's reared its ugly head already is Anna got runny noses and sneezed all over the place. So we have our first taste of separating the girls from Leo. He was ok with this, but they wanted to be near him and help him. They know he has "an owie" and want to give him "medicine," water, and juice to make him better. They just want to be around him.

8/9: Sweet Home Chicago

2006-08-09T20:39:00.000-06:00

Granpa drove Leo and me to Houston's Hobby Airport and we had a very good flight home. Leo wasn't in a good mood on the car ride to or from either airport, though. By the time we got home he was exhausted, but Anna and Nina were so happy and excited to see us and Leo was excited to see them! They grew so much in these past three weeks and their talking is awesome (and hilarious). Shortly after our reunion, Leo asked to go to sleep, which is a very, very rare occurrence, so I got a great opportunity to play with them.

Leo slept a few hours in our bed, of course, and woke-up about 30 minutes after the 8pm treatment started, thirsty as always. Good thing this time I put 2 of those absorbent hospital-style pads under him, because he's been going through a single, so the second was for insurance. His dose today remains the same as yesterday because of the travel, etc., at 175mL of A10 and 12.5mL of AS2-1. Until he gains more weight, the target/maximum dosage is 210mL and 19mL, respectively. One of the first things I did when we got home was prepare the antineoplaston bags on my own, without looking at the notes, and think I did well.

Tomorrow of course continues treatment, but we'll have to figure out who and how to do a blood test, and have an appointment with Leo's pediatrician, Dr. Kroin, in the morning. There's a lot of paperwork and other stuff to discuss with her.

For the foreseeable future and as much as we and Leo would like guests, unfortunately we can't have anyone coming over and won't be visiting anyone. We're being extra cautious when it comes to infection, since the tumor and decadron weaken the immune system. Our biggest concern is Anna and Nina in dayare, so we're going to have to tell the people there to let us know the moment someone sneezes, coughs, itches, has a temperature, etc. We're being paranoid, but the last thing we need to something to get Leo off the treatment and/or deal with another infection. We even went as far as changing the girls' clothes and washing their hands and face thoroughly when they came home today and will continue this from now on. I guarantee we'll go on a world tour when Leo is cured!

8/8: With Dr. Burzynski, Hope Exists

2006-08-08T11:24:00.000-06:00

From left to right: Dr. Burzynski, Leo, me, Dr. Weaver, nurse Louise, and Dr. Samuel. Believe it or not (I was there) Leo took a serious liking to Dr. Burzynski and was trying to play with him after the picture!

This is the sign at the entrance to The Burzynski Clinic.

Houston, we're headed home. Flight arrangement have been made, some boxes shipped, and just need to pack. We'll be back in Chicago tomorrow afternoon.

Leo was discharged today with a very, very hopeful outlook. It has been -- and will continue to be -- quite a difficult road, but we are looking forward to the destination.

I want to thank everyone that has been so supportive over the last few weeks by phone, e-mail, comments, advice, support, thoughts, prayers, donations, and too many other things to mention. Thank you, thank you, thank you!

8/7: Back on Treatment

2006-08-07T22:06:00.000-06:00

Thankfully today we spoke to Dr. Weaver. He looked at and touched Leo's chest where the infiltration had occurred and thought there was very little, if any, swelling. So in went the needle, followed by some freshly-brewed antineoplastons. Almost immediately Leo became thirsty and by the end of the day it was as if he never skipped a beat. His mood quickly became noticeably better as well. Leo laughed and smiled and drank and drank and drank. Phew...

We also met with Marylin, who is the nurse that's going to call us every day, including weekends and holidays, to check-up on Leo. The antineoplastons will be ordered through her because one of her questions will be inventory. We're going to have to keep track of everything. For a while, Leo will have to have 3 blood tests each week, per FDA rules. He'll need a monthly physical exam with Dr. Kroin and then periodic (every month or two) MRIs. We'll have a find a reliable and reasonable lab as well, because within 24 hours the blood test results need to be faxed to Dr. Weaver, to Dr. Kroin, to us, and to anyone else who's interested.

Tomorrow is discharge, which hopefully means another sighting of Dr. Burzynski, himself, and Dr. Szymkowski, whom we haven't seen in a while. It's hard to believe we've been here over 3 weeks. In preparation, Dr. Weaver performed a neurological exam and compared it to the first one, when Leo first arrived. He said Leo's strength was quite good -- as good as before -- and his symptoms did not get worse. I guess this is good news.

We've started packing and already have several smallish boxes with toys and medical supplies. Wednesday is quickly approaching and we're looking forward to going home. I think this was time well spent and we made the right decision to come here.

I finally found the PET scan CD and posted pictures to the date of the scan.

8/6: No Antineoplastons Today Either (Day 2)

2006-08-06T20:13:00.000-06:00

Dr. DeLeon told us last night that there's some chance of getting a Huber Needle back into Leo's port and re-starting treatment today...

While we were waiting for the doctor, nurse Louise blew in and out of the examining room, dropping-off a shopping bag with the antineoplastons, saying nothing but, "Here you go." I bet she feels some guilt because she wouldn't look at or speak to us today.

Dr. Roa decided against restarting treatment today, but he actually looked and touched the area where the infiltration had occurred. He said it was best to let Leo rest another day and let the infiltration recede. I asked him to phone Dr. Weaver and he refused, asking, "Why? What for?" He claimed that a day or two off the antineoplastons won't do any harm or set-back Leo's treatment. This makes sense, but isn't what we need or want to hear. He also said that the protocol stated that Leo had to start antibiotics (cephalexin) as a preventative measure 4 times a day for 5 days. Great. Nothing but good news today.

Leo was not himself today. I thought without all the sodium he would at least sleep through the night. Wrong. He was awake from about 1-3am. He drank very little today probably because he was used to the thirst brought-on by the antineoplastons. Instead, he ate once -- all day long. Good thing Granpa figured-out how to make some tasty "chicken nuggets" from scratch so at least we didn't have to deal with Mc-you-know-what. Signs of constipation are already showing. Leo's mood wasn't good and his symptoms seemed just a tiny little bit worse today. Or maybe not. Maybe he was completely under the spell of steroids and antibiotics (and we saw similar effects while he was antibiotics for the last infection). Decadron is supposed to cause hunger, irritability, aggressiveness, etc., all of which were present from morning. I'm glad today is just about over.

While doing some research I found an article about one of the other two children at The Clinic being treated for a brain stem glioma.

One thing is for sure: we're going to be first at The Clinic tomorrow. Another Huber Needle and treatment needs to restart. At least we're going to see Dr. Weaver and get him back in the game.

8/5: A Trip to the Emergency Room

2006-08-05T19:19:00.000-06:00

Today's start was ok. Leo and Granpa went for their usual walk and we thought our time at The Clinic would be short, since they now want me to do everything independently. As we were about to leave, I picked-up Leo from his stroller, which accidentally tipped over. I didn't think much of it until my Dad told me to look at the pump, which was on the floor, and the IV tubing, which was pulled tight. Leo didn't think much of it either and we headed out.

We were at The Clinic first and did the usual weigh-in, etc. At about 8:55am the pump kicked-in for the last dose of antineoplastons at yesterday's dose of 155mL of A10 and 12.5mL of AS2-1. Moments afterwards, when Dr. DeLeon walked-in, Leo was screaming in pain and pointing to his port. We called nurse Louise and explained to both what had happened. I lifted up Leo's shirt, they looked at the dressing without doing or touching anything, and said everything was fine but we should turn-off the pump. We basically thought that little accident at home just stretched things a bit and possibly pulled-off some of the tegaderm covering the needle and port. Nurse Louise said she was too busy to help at that moment and that we would have to wait for some time for her to have a good look, but she didn't know how long -- maybe 15 minutes, maybe 3 hours. So we left knowing either Leo would be ok or in an emergency room.

Back in our hotel I flushed Leo with saline and heparin and he just smiled at me. I thought we were in the clear. It took me about 20-3o minutes to set-up the bags and pump, which I then promptly connected to Leo to start today's treatment of 165mL and 12.5mL. As before, it took Leo just a few seconds to start complaining. I immediately disconnected the pump to calm him down and phoned the on-call nurse, Louise. What to do? Go to he closest ER, at Memorial City Hospital.

Leo was no longer in pain, but obviously something was wrong with the port, Huber Needle, and G-d only knows what else.

The ER was empty, except for a toddler, and we went in within about 10 minutes. Dr. Cassidy and nurse Patti looked at the dressing and without even touching it immediately noticed some puffiness and swelling and ordered an X-Ray. Unfortunately this hospital doesn't really have much of a pediatric department, so we started thinking of heading straight to Texas Children's Hospital. Here's what the X-Ray showed, with my annotation:

The X-Ray shows that the Huber Needle is not in the port, which is invisible to X-Rays. So Leo's pain came from the antineoplastons being pumped into his chest, not into his veins! Fortunately this didn't turn-out into the worst-case scenario -- at least not yet. Dr. Cassidy said they would take-out the Huber Needle and Dr. DeLeon, on call, confirmed and said not to put-in a new one until Monday. Dr. Cassidy refused to estimate how long Leo would be swollen and only nurse Patti was willing to take a guess that it would take about a day or so for the "stuff" in his chest to be absorbed and relieve the swelling. We left Memorial City ER about an hour after we got there, which has to be record timing. Again, Leo wasn't in any pain and demanded Chicken McNuggets, which we reluctantly provided, since there'd be no sodium pumped-into him until Monday and he must've had a hankering for nitrates and other chemicals. I told him this was his last batch until he was able to go out and buy them himself.

After we returned from the ER, Leo was hungry almost the rest of the day, but didn't take a sip of anything to drink. I guess the thirst brought-on by the sodium of the antineoplaston treatment was gone and he preferred to eat instead of drink. And eat he did. He also gave us one heck of an "attitude" today, which hopefully means that he's generally ok and this was a minor setback, but a big scare for Granpa and me.

In a second-of-its-kind, Dr. DeLeon called a few hours later to follow-up. (Dr. Kroin, Leo's pediatrician, was the first doctor to do this.) We still have to go to The Clinic tomorrow where the nurse will have a look and possibly put in another Huber Needle if there's no swelling, to get him back on treatment. This seems to be the best-case scenario, but I'll settle for second-best on Monday.

8/4: Culture Negative

2006-08-04T19:37:00.000-06:00

Although we don't have the final, official statement from the lab that Leo's blood culture is negative, Dr. Weaver told us that nothing's grown and the official statement will come soon. He also told us that Leo is in the therapeutic range for both antineoplastons. Granpa got the tracking number from the shipping department, which sent the supplies and antineoplastons home yesterday.

Imagine for a moment you are generally feeling tired and unwell. You're taken into a small, cold, brightly-lit room. Your shirt is taken off. You are laid on a table. Someone starts rubbing the left part of your chest with 6 very cold, gigantic Q-Tips. Seconds pass... BAM! You're stuck with a 3/4 inch, thick needle where all that rubbing was done. No, this isn't from a horror movie like Hostel, although it could be. This has been Leo's typical Friday for several weeks now and will continue until he's cured. Today was no exception. The thing is, Leo is tough. Tough enough to wake-up at 4am, go through that and some other unpleasantness during the day, and fight-off sleep until 7:30pm. Mel Gibson is no Braveheart -- Leo is.

8/3: Less Than One Week Left

2006-08-03T20:10:00.000-06:00

Leo woke-up last night at about 2am and decided to work-out his lungs by yelling a bit. It had something to do with my changing his incredibly soaked diaper and pajamas. He eventually relaxed and fell asleep until about 5am. That's when he seems to have the most energy, so he went for a walk in the stroller with Granpa to ensure all the local construction sites were excavating and bulldozing correctly. Unfortunately they weren't even working, but it was still a successful outing since Leo came back with a big, big grin.

Today was a good day at The Clinic, albeit a very long one. Good because the blood culture remained negative -- 48 hours down 24 to go. Starting tomorrow I will no longer need to prepare the bags there; they now trust my bag preparation and pump programming skills. Instead I'll be training on a "gravity IV" thingie in case the pump breaks or something. The day was long because I decided The Clinic should ship our supplies home before Leo gets discharged. Usually people take all this stuff with them (and there's a lot), but I figured instead of worrying about hurrying to get home, unpacking, finding everything, preparing the bags, programming the pump, and plugging-in Leo, Marina can ensure everything is there and in good condition when it arrives and prepare it for Leo's arrival at home. Just one less thing to worry about. This was a long and somewhat inefficient process.

We first needed an order from Dr. Weaver, who was ok with this idea. While he was writing that order nurse Louise took us to see Margaret, who takes care of the supplies. Margaret told us what we would need, how to order it in the future, etc. She had some small pretzels (yes, with salt) and Leo just couldn't resist, so he had 2 or 3 of them. She gave us 2 forms that we had to take to Rachel, in finance, who was taking over for Debbie, who is on vacation. Rachel's from the insurance department, but was helpful and even though she left the office a few times, didn't take that long. One of the 2 forms was initialed and we now had to take these forms to the shipping department on the first floor. To make this a little more efficient, and because Leo was getting more aggravated as he got more hungry, we decided I'd take him to the car while Granpa went to shipping. The shipping person tried to tell Granpa how things worked around there -- that he wouldn't ship the first batch (i.e. we had to take it with us). That was his first and last mistake, since the Doctor's orders were clear, meaning the supplies would be shipped to us, without questions. I guess the person in shipping was at least bright enough to quickly understand with whom he was dealing and shut-up. I'll have Granpa get the tracking number from him tomorrow. :) We left the building about an hour after this process started, with Leo absolutely ravenous. This is the one day we didn't bring food with us, of course...

The sure-fire way to feed the hunger and tame the beast is with a fresh mozarella pizza from Whole Foods, which we all enjoyed. We came back and even though he fought and fought, the sleep won, at least for a short while. I napped with Leo, while Granpa slaved away in the kitchen, and woke-up to being smacked, clawed, punched, and periodically rubbed, with lots of giggling in the background! Leo was generally in a very good, fighting mood today, which are all positive signs. His constipation seems to have gone, which probably also helps, and we understand the medication-thirst-sleep routine a little better. He even told us when it was time to take the decadron!

The 9 year-old girl, from the Italian family we met yesterday, is here for the same condition as Leo, pontine glioma. She is the third child with pontine glioma currently at The Clinic, with 1 more possibly on the way. Their English-speaking relative stopped by this afternoon and Granpa drove them shopping, since they've been calling cabs to get around. Too bad we have a fairly small car and there's 3 of us and 4 of them; otherwise, we could at least take them to The Clinic and back with us.

So it looks like we're beginning to wrap-up our trip. There's still a very long way to go, but the end is now in sight.

8/2: Routine

2006-08-02T20:06:00.000-06:00

Last night Leo decided to have some fun and sleep with Granpa. Of course he woke-up in the midle of the night, thirsty, hungry, and wet. Granpa took care of business and Leo decided to leave him alone and sleep with me. He woke-up again at either 4 or 5am -- I can't even remember -- and, well, repeated his routine. Granpa just asked if he wanted to sleep with him today but nope, not tonight.

Yesterday The Clinic decided to do a blood culture, not just a plain blood test. This was done as a precaution to infection. Fortunately today the results came back negative. Good, but not final. Only after 72 hours of negative results (i.e. no bacterial growth) can Leo be classified as infection-free. Back at home when he got the infection, the culture was positive almost immediately, so today's negative result is promising; 24 hours down, 48 to go. Today one of the small blood tests was required and, again, thank G-d for TPA, which worked in only 15 minutes. Today was also the first time I did an "independent" bag change of A10, in our room. I was very nervous and took about twice as long, but the bag looked good, without any air bubbles, so treatment continues.

We met a family from Italy that came to The Clinic for their 9 year-old daughter's treatment. They don't speak a word of English and have a relative from Connecticut translating. Granpa offered to drive them to Whole Foods or where ever they want to shop because they seemed a little lost, but they probably fell asleep jet lagged.

I also started a new "routine" with Leo. I start a slideshow of of recent family pictures on the laptop here, as well as on the Yahoo site, and we watch it over and over again (between showings of "I Love Big Machines 2" or the "Mega Machines" DVD with bulldozers, monster trucks, and tanks). He squeals with joy when he sees Anna, Nina, and Mom!

Leo's dose of antineoplaston AS2-1 is within therapeutic range now and A10 is increasing and almost there, so we're actually starting to talk about our departure! Our estimated time of departure is Wednesday August 9, with Tuesday being our "check-out." Of course that's very exciting, but also provides for plenty of anxiety.

8/1: Going Strong

2006-08-01T19:55:00.000-06:00

Regardless whether Leo looks like a little water baloon, he's going strong. Clearly this is a difficult ordeal for him, but he's tough and still fighting. The sheer quantity of liquid is a mixed blessing. While Leo is very bloated, almost constantly thirsty, and pees like a water cannon, he doesn't seem to be constipated anymore and doesn't gorge himself. The thirst, if that's all it can be called, consistently starts about 45 minutes or so after each dose starts, so at least we know when we are going to be woken-up and can be "prepared." Roughly 500-750mL of liquid has been required so far to quench that thirst. That's something like 1-1.5 pints or so...for a 3 year-old...6 times a day.

Yesterday's blood tests came back good, with sodium at 134 and potassium at 4.1-4.2, which we're told is good; blood counts are fine, too. Today his dose of antineoplaston A10 was increased to 135mL and AS2-1 to 12.5mL. Dr. Weaver mentioned that A10 will max-out for Leo at about 200mL and AS2-1 at about 18mL, so we're more than half-way there!

If the whole computer thing doesn't work out, I think I can soon become a nurse, or at least an assistant. Do they get benefits? :) Seriously, I'm becoming an expert in preparing the bags of antineoplastons and connecting the tubing. I'm also getting better at changing the bags before all 6 treatments. The math works like this: 6 treatments of about 200mL each, for a total of 1.2L. The largest bag is 1L, so there will need to be a bag switch, but not a tubing switch, and a slight retiming of the pump. Having done this twice now at The Clinic, tomorrow will be my first attempt in our room at the hotel. I'm a little nervous, but have instructions that Marina started, so I should be ok.

Thanks again to everyone that has donated to Leo's Treatment Fund and sent us their prayers, thoughts, and emails -- all are needed, so thank you!

7/31: Liquid Diet...When Awake

2006-07-31T19:14:00.000-06:00

Leo ended yesterday with an intake of just over 2.8L and output of just over 1.5L. This trend has continued today, with about 2.35L of intake by about 8pm and at least 250mL to go. His appetite has decreased a little because of this. Granpa also noticed that somewhere around 40 minutes after the pump starts each dose of A10, Leo becomes extremely thirsty. This was also obvious from the daily log sheet where we keep track of the intake, where right after each dose there's a huge amount of liquid intake. Dr. Weaver confirmed that this makes sense because the antineoplastons are in a saline solution and, again, all the sodium makes him really thirsty. Leo's treatment is now 115mL of antineoplaston A10 pumped over 1 hour and 32 minutes (for a 6 dose total of 710mL) and 10mL of antineoplaston AS2-1 pumped over a meager 8 minutes immediately after the A10.

Although Leo's mood is good, the second bag of antineoplastons combined with the waking from thirst at night -- or whenever he's asleep and the pump gets going -- combined with the decadron make him really, really tired all the time. Even when Granpa takes him for a walk in the stroller while the weather is still reasonable (usually before 8am), Leo usually falls asleep for part of that walk. The surprising thing is that they go to check-out construction sites around here, with excavators, bulldozers, and all the other favorites (we've watched "I Love Big Machines 2" about 1,000 times now)! The sleepiness was confirmed and deemed "normal" by Dr. Weaver today (and we were told about it at the very beginning as well as by other parents and patients).

Speaking of decadron and how this boy is still "with it," he is supposed to take 1 little blue-green pill of 4mg and another 1mg yellow pill. He's used to taking the blue-green pill, but not the yellow. I got some cereal and milk and thought I'd put the yellow one with some cereal and trick him. Yeah, right. I started by priming him with 2 or 3 spoons of cereal and milk without the pill. Then, before the next spoon, I deftly snuck-in the yellow pill among the cereal bits -- I know he didn't see me, but he refused all my cereal attempts from then on! What a little stinker!

Sunday we met a 5 year-old girl at The Clinic from Oregon that was diagnosed with the same condition as Leo, pontine glioma. Fortunately she has virtually no symptoms other than her left eye slightly turning inwards. She initially had an operation on that eye to fix it and was going to have another one, when they did an MRI and discovered the tumor. I think they said she's one of 5 adopted children. A nurse also mentioned today that another little girl will be coming to The Clinic shortly with the same diagnosis.

7/30: Water, Water Everywhere...

2006-07-30T22:17:00.000-06:00

There were 2 minor issues at The Clinic. The first was timing of the pump. Yesterday we were told that the pump would infuse the antineoplastons every 4 hours, as usual, starting at 10:45am. But we noticed that it seemed to be behind by 1 hour and 45 minutes. The quantities were correct, but not the times. Today at The Clinic we were told that if we stop and/or turn off the pump, there is no internal clock and the countdown continues from where it left off upon start-up. In other words, when the pump is stopped or turned-off, there's no countdown. What happened? Bathtime. I disconnected Leo for a bath and thought I'd just reconnect him in time for the treatment, 1 hour and 45 minutes after the bath! He still got all 6 doses and now we know.

The second issue was Leo's intake/output from Friday. Each morning we bring the previous day's wet diapers. We also bring a sheet of paper with all of Leo's liquid intake (even ice cream and yogurt count; basically anything liquid at room temperature counts). Yesterday (Saturday), no one at The Clinic mentioned anything, except for Granpa, who noticed the wet diapers were over 4 pounds, while the intake was about 1.4L. That's a big difference, even when we convert from pounds to kilos, but again, no one said a word...until today. That's when Dr. Eva mentioned she was very concerned about that difference, but then realized it was Friday's, not Saturday's diapers; today's numbers were fine. She still made a very serious point that it's preferrable to have the intake equal to or greater than the output to prevent dehydration, especially this summer.

The rest of the day was spent drinking (a lot), eating, watching news about the Middle East, napping, and more drinking. In fact, it's about 11:25pm right now and Leo's intake for today, with another dose of 115mL coming at about 1am, is roughly 2.8L -- that's almost 3 quarts! Leo's still in a good mood, especially when he's eating or drinking. On the topic of drinking, Granpa figured-out a way to prevent the coughing that may cause stuff to go into Leo's lungs. Instead of constantly drinking or gulping, he started suggesting to Leo to slowly drink 2-3 sips at a time and then rest for a second or two. This really seems to be working well and it's definitely better than making thick water with ThickIt!

Tomorrow will probably be a tedious day at The Clinic because I need to learn how to replace a bag "midflight" (i.e. before all 6 doses). The reason is because as the dosage increases, the bags won't be holding enough antineoplastons (the A10) so that bag will have to be replaced. Plus a blood test, so we'll see.

7/29: No News is Good News

2006-07-29T20:28:00.000-06:00

An uneventful day today, other than the port actually working when it was needed! A quick blood test showed Leo's sodium level at 132, which is actually towards the lower end, and a fine potassium level, so both doses were increased. We set a record for the fastest clinic visit ever, at less than 2 hours! For some reason we never did get to the Houston Space Center, but there's still time. Leo took another nap from 7 or so until 9:30pm, so another long night is in the works.

Leo's symptoms are not getting worse. His left eye isn't moving inwards anymore and he hasn't choked on solid food in a few days. He still chokes when he drinks, though. His left hand, arm, and leg are unchanged, so we have to help him with pretty much everything. The appetite is still great and we'll probably be waking-up in puddles for a long time, but tomorrow should be another easy day.

7/28: Needle Change

2006-07-28T22:55:00.000-06:00

The Huber Needle change went without a hitch today and thankfully without much, if any, pain. Taking out the old one seemed to be more traumatic than puting in the new one. Regardless, nurse Louise took care of business and did a great job with both (she knew I wasn't happy about the previous attempt). Of course Leo was scared and crying, but I didn't see or hear the kind of pain that was evident last time. The combination of enough Emla Cream and not too many people was obviously good enough because I didn't even try to pass-out.

Leo was in a decent mood today, but woke-up 3 times last night... and then we overslept and woke-up at about 8:45! Our sleep "schedule" is really messed-up as evidenced by a nap we took starting at about 4:30pm. While Granpa was putting-in overtime with cooking and laundry, Leo and I woke-up at about 8:30pm in a big puddle that made him wet, literally, from head to toe! The antineoplastons make him so thirsty he drank about 11 ounces of water and juice within a few minutes. That's a lot of intake and I'm getting used to the puddles. He didn't overeat and finally fell asleep just a few minutes ago.

Leo has started saying and waving hello and goodbye to Jaga (pronounced Yaga), one of the receptionists at The Clinic. His swallowing seems to have gotten a little better because he definitely doesn't cough as much when he eats or drinks. He's starting to use his left hand more, but still doesn't like to stand and there's still no walking. He also shows the nurses that they need to use his right leg for measuring blood pressure; which finger he feels like sticking into the little pulse oximeter that measures oxygen saturation in the blood; and that his right arm is best for measuring temperature. Of course the nurses appreciate his efforts at making their lives easier. He still doesn't like being weighed, because first I weigh the two of us together and then ask whoever is next to us to hold him while I weigh myself (don't ask), but he'll probably get used to that as well.

Hopefully we'll go for a drive to the Johnson Space Center tomorrow since nothing much should happen at The Clinic.

7/27: Hooray for TPA!

2006-07-27T19:58:00.000-06:00

Today's blood test was brought to us by Altiplase TPA. Only 30 minutes for this brand of TPA to work and voila, blood! Otherwise today was a long, annoying day. Our appoinment with Dr. Weaver was at 11:30 so we came just before 11. We went straight to the IV room, where I prepared both bags of antineoplastons. There are really only a few steps to "preparation." Connect the tube to the bag; get rid of all the air inside the bag and the tube; connect the tube to the pump; program the pump; and connect to Leo. None of this is very complicated and doesn't take too long. Regardless, one of the nurses should have ordered the TPA from the pharmacy...but no, that would've been too efficient. Instead, they all waited until I finished with both bags.

By this time it was about noon and everyone was out to lunch, including the pharmacist, who would return at 2pm after what was, I'm sure, a very nice workout at the gym. Then we were told that the pharmacist went straight to some meeting without checking her voicemail to prepare and deliver the TPA. Granpa got upset -- and rightly so. Then we were told that the pharmacist had, in fact, prepared the TPA as best she could, but Dr. Weaver hadn't written an order, so more waiting. It also turned out that it was Dr. Weaver in the meeting, not the pharmacist. Finally everyone got their acts and orders together and Leo got TPA, promptly administered by nurse Louise upon arrival. 30 minutes later (instead of the estimated 2 hours), blood was filling the vacuum in a sterile syringe connected to Leo's port. During all the waiting, Leo ate a small, freshly-made, low-sodium, organic pizza that Granpa got from Whole Foods and took a catnap before and after his feast. Sodium and potassium levels were right in the middle of the range today, so the dose was increased. He's now at 75mL of A10 and 7.5mL of AS2-1, which are administered over the course of 1 hour and 6 minutes, respectively. We made it back to our hotel at about 4pm and Leo asked to be put on the floor so that he could walk! He only took 1 or 2 seemingly painful steps, but it's progress!

I'm dreading tomorrow and next Friday like the plauge: access needle change. I found a horrific link that shows pictures of these barbaric torture implements, also known as Huber Needles, as well as an idea of what the port beneath Leo's skin looks like.

7/26: Changing of the Guard

2006-07-26T18:25:00.000-06:00

Today Granpa Leonid came to Houston from Chicago. Anna and Nina need one of us at home and we decided it was best for Marina to go, since schlepping Leo around is very difficult now with the weight gain from decadron. Those are not Leo's normal cheeks (see my first post) in the picture -- they're more like mine :)!

Leo's blood counts came back normal, with the sodium towards the lower end of the scale, probably because the antineoplaston dose is still fairly low, while we jumped on the low sodium bandwagon immediately. So we're just being careful with the sodium without being extreme in either direction.

Leo's mood is better, but not the sleeping. He's been waking up 2-3 times a night, usually just really thirsty -- and we've been waking-up in puddles! The potty training we thought we'd started, with some success, was for naught; he's back in diapers. Although he's clearly very tired towards the evening, he absolutely refuses to nap. His appetite seems to have slowed-down a bit as well. Maybe it's because we're lowering the decadron dosage by 1mg, but he has not had his feasts starting last night. He's been eating more like good ol' Leo (i.e. very poorly). But that isn't really a concern right now since he's gained so much weight. Two other weird decadron side-effects: he craves milk now like never before and has started to grow little tiny baby hair on his legs and back! We're seriously researching non-steroidal anti-inflammatories and going to discuss some options with Dr. Weaver and the nutritionist.

Tomorrow is another blood test and in preparation, in between doses of antineoplastons, we've been heparinizing Leo's port to try and remove whatever clot or goop has collected. A few drops of blood came today so hopefully it'll work tomorrow.

7/25: A Mixed Bag

2006-07-25T15:31:00.000-06:00

We finally got a chance to speak to the radiologist, Dr. Vsevolod Dolgopolov, about Leo's PET scan from Friday. The activity captured on the PET scan was on the right-hand side of the brain stem, whereas the tumor is more towards the left. This seems to imply that the activity the last MRI showed was related to the damage that the 2 doses of radiation caused, such as destroying/weakening vessel walls and the Myelin Sheath. There wasn't much hypermetabolic uptake in the tumor, which means no increased activity so the tumor isn't growing very quickly. At the end of the day, there's no guaranteed to way to tell exactly what's going on, but when comparing the MRI to the PET, the above made sense. This is definitely good news because it's not a fast growing/high grade tumor. The downside, if it can be called that, is that lower grade tumors take longer to respond to treatment of any sort, including antineoplastons. But if it's just a matter of duration of treatment, that's fine, as long as we can see some kind of improvement.

Least, but not last, another day, another blood test (we now say the word "blood" with a Texan twang, just like nurse Louise). Needless to say the port didn't work, but the heplock in Leo's hand eventually did, so not only are they testing electrolytes, but also doing a Complete Blood Count (CBC), which includes red cells, white cells, etc. We'll probably get those results in a few days.

Finally met with the nutritionist and were told what everyone already knows.

A balanced diet of carbohydrates, proteins, and fats.
Sodium up to 1000mg per day.
Lots and lots of fluids, but especially water. No sports drinks since they sometimes have sodium.
Lots and lots of fruit and vegetables. We should clean all fruits and vegetables with one of those special washes and not just plain water to remove any wax, polish, pesticides, herbicides, and other crap on the plant.
Limit milk, even the organic kind. This is because the cows may still be eating grass/whatever that was treated with pesticides, herbicides, and other crap, which finds its way into milk. Even if cows eat the freshest grass available, if the fields are polluted (i.e. lead, acid rain, etc.) that junk gets into the milk. So we should consider soy milk as an alternative.
Soy milk is ok. We need to look for not just organic, but non-genetically modified soy products. Some brilliant scientists figured out how to incorporate pesticides into the genes/DNA of the plant (at least that's what we were told), so we need to ensure we're buying stuff that's as clean and pure as possible.
Processed foods are basically out of the question. That means anything with nitrates, nitrities, and similar chemicals. This excludes all deli meats and cheeses, unless they're organic, non GMO, etc. But then we have to watch-out for the sodium content.
Finally, nothing that's been bleached, enriched, hydrogenated, or otherwise processed. This excludes everything like white bread, margarine, pre-packaged peanut butter, sugary goods, etc.

Fortunately that means our diet doesn't drastically have to change, but we do need to make some adjustments.

Most importantly, our little butterball was in a bad mood most of the morning because he didn't sleep very well (just 4 hours at night) and didn't eat breafast. So it was probably a combination of exhaustion and hunger. After a nice lunch, he starting giggling and laughing and even squealing with joy and all became well again.

7/24: Port Problems

2006-07-24T20:29:00.000-06:00

Leo needed to have a blood test today and of course his port didn't cooperate. Thankfully the nurses at Greater Houston Imaging left a heplock IV in his right hand. It didn't cooperate at first either and the nurses wanted to stick him again. After we told them to find a way not to stick him, nurse Louise figured out how to get the blood from the heplock and all was well. Otherwise we would have had to have gone to Texas Children's Hospital. Another painless day.

We also convinced The Clinic that they need to order Tissue Plasminogen Activator (TPA) because we can't make Leo suffer anymore. Especially since other people have the same issue, the nurses talked to the doctors, ordered it, and will shortly have it on hand at the clinic for whoever needs it. We found out Genentech charges a whopping $1,800 for a single dose of their genetically-engineered Altiplase TPA, which is injected into the port and then withdrawn after having dissolved the clot. I can't call that a "buy" recommendation, but can say that I plan on buying a few shares. In fact, Genentech is the same company that's researching gene-based treatment of cancer and other diseases, just like the Burzynski Clinic, with drugs like Avastin, among others.

Some of Leo's symptoms seem to be getting better with that slight decadron increase from the start of our treatment here. His eyes closed completely last night when he went to sleep (they haven't in a while) and his speech has definitely improved. He's using his left hand and arm a lot more and moved his left leg more today. His mood is a lot better, too. At the clinic today he was laughing and giggling so much that even the nurses and other patients noticed, saying they hadn't seen him in such a good mood! His cheeks and face are now exhibiting the typical "moon face" of children on decadron. Marina and I were noticing how Leo looks like other children on the walls of The Clinic, which were cured, so we're praying to have Leo's before, during, and after pictures on those walls soon.

Tomorrow at 9am we are meeting the nutritionist and will probably talk to the radiologist about Friday's PET scan.

7/23: Increasing Both Antineoplastons

2006-07-23T21:49:00.000-06:00

Another easy day for Leo, who seemed to be in a much more spirited and better mood. Today both antineoplastons, A10 and AS2-1, were increased to 35mL and 5mL respectively after seeing Dr. DeLeon. The AS2-1 is supposed to cause drowsiness, but seems to have had the opposite effect in Leo, who refused to sleep all day even though he was clearly exhausted. We should know by now that anytime something is supposed to cause sleepiness, Leo will have the opposite effect. Oh well. Eventually he did fall asleep, but not without a fight. We decided to stay in today and just rest.

Leo continues to eat at full throttle, which is causing us to not only lower the sodium and increase potassium, but also to give him fewer calories with many, many more fruits and vegetables to help move things along for our "Little Buddha."

Tomorrow is another blood test, so we're hoping that the port will work and/or they will clean it with TPA, since the IV in his hand has to come out tomorrow. Leo seems to be tolerating the antineoplastons well and of course we're praying that they're starting to destroy the tumor.

7/22: Finally an Easy Day

2006-07-22T20:55:00.000-06:00

Today was a much easier day for Leo. No needles, no pokes, and not too many prods. Just an increase in antineoplaston A10 to 25mL after a successful (negative) blood test through the IV that imaging center left yesterday. He was in a better mood today because I got punched a couple of times. Maybe it's because we're spoiling him with some news toys or maybe he was just feeling better or maybe the visit with Dr. Rao was kept brief, but he smiled and played today. His speech was a little better as well, so we want to believe that everything is moving in the right direction. He's gained quite a bit of weight and is up to about 32 pounds; at the time of diagnosis about a month ago he was around 28 pounds. Doesn't sound like much, but it's almost 15%, which probably contributes to his being tired (as does the brutal Houston heat).

Tomorrow will hopefully be as uneventful. Nothing other than increasing the antineoplastons is on the agena, not even a blood test.

7/21: Antineoplastons Day 3...Sort of

2006-07-21T21:04:00.000-06:00

Leo had a Positron Emission Tomography (PET) scan scheduled today to start at 11:30, but we were asked to get there by 9:30am. As usual it was going to be under general anaesthesia, which meant no eating or drinking several hours in advance. Leo knows these things, so he woke-up hungry and thirsty at 2:00am! I can't remember what we fed him, but he fell back asleep at about 3:45. He woke-up hungry again at 7am, which was probably past the no-eating time, but what can we do when he seems to be starving!? After a small snack we disconnected him from the antineoplaston pump as directed and were off.

From about 9:30 until 11:00 I was passed-out on a waiting room couch at Greater Houston Imaging, with Leo passed-out right on top of me, near a beautiful large fishtank. Too bad we didn't have a camera with us, because Marina said the two of us (snoring) were quite a sight! Anyway, a PET scan involves injecting radioactive glucose and then measuring tumor activity -- tumors seem to like glucose much more than normal cells, so a baseline blood test for glucose level was needed. The co-antagonist in our saga, Leo's venus port, of course didn't cooperate again even after another needle change, so they started an IV for some reason to draw blood. For those keeping score, that's 2 more needles today. At least the nurses did a really good job and Leo didn't seem to feel any pain (and I didn't try to pass out). Here are 3 images from the PET scan. The black dot in the "crosshairs" is the tumor:

While Leo recovered I got him another custom-made, low-sodium pizza from Whole Foods, but we were warned he wouldn't be thirsty or hungry for a while. In addition, there was concern now for his damned venus port and we were told to go to Houston Imaging (a different place). A radiologist would inject iodine into the port and do an x-ray to see what was going on inside, to ensure there wasn't an internal problem. Leo wasn't happy about this, but since it was completely painless and took only a few minutes, cooperated as much as anyone could have expected. Fortunately, all the internal "stuff" of the port seemed to be working perfectly and we got to see a video x-ray of exactly where the iodine traveled, which was very cool. Another TPA flush will probably be required next week.

By now it was about 4pm and we still hadn't even been to The Clinic, even though they called a few times. We weren't about to skip a treatment and battled Houston traffic to arrive just past 4:30 to get Leo hooked-up to treatment 3. Unfortunately because of the PET scan and port check-up, yesterday's treatment (#2) didn't complete, so neither of the antineoplaston doses was increased today, but will be tomorrow.

Leo's appetite returned and he enjoyed the low-sodium pizza and a few other things, took the decadron, and just passed-out at about 7pm -- an arduous day to say the least. He was so tormented today, so bothered and poked and prodded that he sadly seems to be starting to realize that this is his undeserving, misfortunate "norm," while we pray this is just a temporary setback. Today, for the first time ever, after denying anything hurt, Leo said he was just scared.

I'm half-way through reading, "The Burzynski Breakthrough." It's easy reading and contains plenty of propaganda, but has a lot of history and general information, especially about some of the most amazing cases.

7/20: First Dose Increase

2006-07-20T18:11:00.000-06:00

Looks like Leo's first dose went well, which means no side-effects. The A10 dose was increased by 10mL today, while AS2-1 will remain constant for another day or so. We also have only 1 dose of the antibiotic left, thankfully because that gets in the way of the antineoplastons (we have to disconnect the pump during antibiotics). The port didn't work again today, so Leo got stuck twice for a blood draw...and then the port started working. He's going through so much and is such a trooper. He never complains about anything when obviously he isn't feeling well.

We're starting to watch more closely what we eat and the groceries we buy. Lunch today was at a health food store/restaurant that made some really good Mexican food. They claim to put no salt into anything, which is hard to believe because everything was so flavorful, but this seems to be a popular hang-out for Burzynski patients and families.

Leo is weak and very tired, although still eating better than ever. He doesn't drink from straws or sippy cups anymore because they seemed to cause more choking and coughing; drinking straight from a cup seems to help in that department. He doesn't like to stand anymore and walking is almost out of the question. He can and still does both, but prefers to be held or carried, which is getting tougher because he's putting on weight (over 32 pounds now) and is connected to the pump. Speaking of the pump, we got him a Spiderman backpack on wheels. He's too small to wear the backpack -- that is, the pump and bags are too heavy -- but when the walking gets better should be able to wheel-around the backpack.

Tomorrow is our first PET scan in the morning, which will force us to keep the staff at the Burzynski Clinic late...

7/19: Antineoplastons Day 1

2006-07-19T22:28:00.000-06:00

Today was Leo's first treatment of antineoplastons. After the usual nurses' visit, we spoke at length with Dr. Weaver and asked dozens of questions...until we noticed he was getting antsy and trying to stand-up. But we kept on and got all of our questions answered. Good thing they're all pretty patient over there. Of course Leo was approved by the Internal Review Board for treatment under protocol BT-11: PHASE II STUDY OF ANTINEOPLASTON A10 AND AS2-1 IN PATIENTS WITH BRAIN STEM GLIOMA. The Clinic scheduled a Positron Emission Tomography (PET) scan on Friday morning (basically seems like a color MRI). The next MRI will be back in Chicago 8 weeks from now, with the following 8 weeks later. G-d willing, Marina will receive the best birthday present ever and we will hopefully have a lot to be thankful for on Thanksgiving!

At 11:00am today Leo was connected to his new best friend, a small dual-channel machine that started pumping antineoplastons into him. It comes in a little black canvas bag that people may mistake for a lunch carrier. The battery-operated pump is the size of a portable CD player and very light. Underneath are two clear plastic pouches. One contains antineoplaston A10 and the other AS2-1. Each bag is connected to the pump and one IV tube runs out of the pump and bag connecting to Leo. Nurse Louise told us that A10 breaks-up the tumor and AS2-1 destroys it. We received a binder full of documenation and instructions that we'll be learning over the next 3 weeks. One was an introduction to the proscribed diet. In a nutshell, low/no sodium, high potassium, and lots and lots of water (but not sports drinks, sorry Gatorade) -- we will be meeting with a nutritionist next Tuesday for a detailed dietary discussion. (On a related note, I didn't know that potatoes have much more potassium than bananas and a common sodium/salt substitute is made of potassium.) Louise also showed us a few things.

First she showed us how to connect and disconnect the pump and the IV tubing. This was a no-brainer for us because Leo's had the venus port for a while, which we've been using for antibiotics and flushing, etc. So this was very quick. Second she showed us the "emergency kit," which consisted of a large vial of decadron, some needles, alcohol wipes, syringes, etc. We have to be prepared in case of an emergency and need to carry this (and the pump with antineoplastons) with Leo at all times, so the kit also goes into the bag. We learned how to connect the needle to the syringe, fill it with the correct dose of decadron (which we would need to get from the on-call doctor), stop and disconnect the pump, and inject into the port, all under sterile conditions and without getting air into the line. This wasn't too hard, either. We're sure this was the easiest day, since we see other people preparing IV bags, which seem to take much, much longer than our plumbing connections.

Leo's first trial dose, the smallest he'll probably ever get, took 30 minutes and thankfully he showed no signs of allergic reactions. Then Louise got 2 new bags and sent us on our way; our day started at 10:30 and finished by about 12:30-ish, so it was very quick. Leo, of course, wanted more pizza, so we decided to go to Whole Foods in search of low sodium, high potassium goodies. Robert at the prepared foods counter offered to make a special pizza, from scratch, just for Leo and even consulted with their on-staff cheese expert for the lowest-sodium cheese and made fresh sauce, all on a spinach wrap. During all this, Marina found a few low sodium things and we had a very nice lunch in the store. Leo enjoyed the pizza, which was absolutely amazing! He did get a little cranky and must've been in a food coma for the ride to our, hold on, new hotel.

Yes, it took some convincing by the Grandparents, especially Granpa Leonid, but we moved into Candlewood Suites just a few minutes from the clinic. Immediately people at Candlewood (other patients and their families) recognized Leo -- he seems to be a bit of a personality over there. Our room is big, with a good sized bed for all 3 of us and the pump, so no one should go bump in the night anymore. After waking-up from a little catnap, Leo placed an order for peanut butter and jelly (a first) and yogurt, which we had. So while Marina helped him with the yogurt, I went to the local grocery store and bought PB and J, as well as other low/no sodium and high potassium foods...including plenty o' potatoes.

Maybe we're just getting used to the speech, but he seems to be talking a little better than before. His legs seem weak, though. He can sit-up from a laying position, but doesn't really try to stand-up. Dr. Weaver suggested we slightly increase his dose of decadron by 2mg, as a third dose, so 4-4-2 starting today; he also gave a prescription for lactulose, a sweet syrup that should ease his constipation, which little sister Anna also takes. Although he wasn't happy getting dressed this morning to go to The Clinic, he's actually in a decent mood and smiles and laughs a lot. He even kind of squeals with joy sometimes, which is the best and we try to keep it going as long as he's willing.

Thanks to everyone that has donated to Leo's Treatment Fund! Words can't describe our gratitude to your generosity -- thank you!

Tomorrow starts at 10:30, but we'll be up early, as always! If you've gotten this far, no good deed goes unpunished: we need good low/no sodium and high potassium recipes.

7/18: Not a Fun Day

2006-07-18T20:00:00.000-06:00

Yesterday we noticed that Leo's left eye was ever so slightly sometimes turning inward, which didn't get worse today. But Marina thinks he's either seeing double or losing focus because of the way he sometimes holds his head, chin closer to chest. We asked him about this in as many ways as we could, but he always said his vision was fine. We tried holding-up various numbers of fingers, asking how many pieces of bread were on a plate, etc. He always answered correctly, but obviously we're keeping very close track of all his symptoms, looking for anything new.

This morning was another example of bungling by our medical system. Leo is still taking the antibiotic for that infection. Coram Healthcare in Mount Prospect, Illinois has been supplying small, disposable, ballon-like devices that connect to his venus port, squeezing out antibiotic by atmospheric pressure over 30 minutes. They're very small and convenient, but we ween't given enough. Yesterday I called asking why and Venita, the pharmacist, claimed that she was told Leo would be admitted to some Houston hospital, which would provide its own antibiotic. It took no effort to convince her that was wrong and she offerred to FedEx the remaining 8 balloons, along with the corresponding saline solution and heparin to Carla, who would call us upon arrival, at the Burzynski Clinic. After two fruitless calls this morning to Carla, I called Coram asking for a tracking number for Leo's antibiotic and was told that it had been dropped off today at 10:28am. Where? Home, not Houston! Then I got mad, very mad. Fortunately Brian, Coram's pharmacy manager, after admitting that the antibiotic was shipped to the wrong address quickly sensed my anger and realized that no process, no person, no nothing was going to prevent Leo from getting the proper antibiotic dose within 2 hours, in Houston. It came on time and I still owe Brian a phone call.

We weren't just waiting during this time. The only requirement today was to draw some blood from Leo for Internal Review Board approval. But before explaining that ordeal, I want to describe our meeting with a Russian-speaking radiologist/radiation oncologist, Dr. Vsevolod Dolgopolov, the first of his ilk to actually go over Leo's MRIs and explain what we were seeing. He started by showing us Leo's first MRI of June 19, which seemed to show a low-grade tumor, one that wasn't growing very aggressively. The last MRI, though, showed increased contrast, meaning more aggressive growth spots (again no overall increase in size), but it was very difficult to determine the cause, partly because of the 2 doses of radiation. Now came some explanations.

He explained some of the basic cells that make-up the central nervous system and brain, the differences in speed of cell division (for the cells that actually divide -- some naturally don't), and the Myelin Sheath. Normal cells take somewhere around 30 days to divide into 2 new cells. But some cells are a little quicker, for example 25 days. Other cells are faster still, maybe dividing every 5 days. The faster cells divide, it seems, the fewer functions they (can) perform, other than just dividing. We can see where this is headed. He also explained the difference between normal blood vessels in the brain and those created by cancerous cells, which need more energy (glucose) to survive, but create porous vessels. So it's hard to tell apart the signals for creation of blood vessels sent by cancerous cells versus ones sent by normal ones, but there's gadolinium leaking from the cancer-created vessels. He also drew how cancerous cells press on vessels and cells around them, causing leakages of fluid and other problems. Maybe one of the reasons for more contrast was the radiation itself, which can damage the Myelin Sheath to cause leakage of fluid, which contained gadolinium. Fortunately this process seems to be reversible in the long-term. Another reason for enhancement may have been due to leakage caused by the cancerous cells pressing on the vessels. Of course there are other reasons. Anyway, this was a very interesting discussion that provided much more information than we had ever gotten and definitely needs more research. One last bit of advice. He suggested after our return to Chicago we consider talking to a neurosurgeon about placing a shunt to clear some of the fluid that may be getting compressed. The 4th ventricle isn't blocked, but the point is to do this before it becomes a problem. Unfortunately antineoplastons probably won't work fast enough to prevent this potential problem, which seems to happen in most if not all children with brain tumors, who eventually do get a shunt. Back to the house of pain...

The heparin yesterday and this morning didn't help and no blood was returning from the port, so replacing the needle accessing his port seemed to make sense. Wrong. Leo was stuck twice with a thick access needle in his left chest during several unsuccessful attempts -- the numbing cream clearly didn't work. There was no blood, but each stab pierced his gentle skin and caused him so much pain that I was asked to leave the room, beginning to faint. I was finally "allowed" back after they drew blood from his hand, again having stuck him several times before getting a successful return. More pain: never having gotten blood from the port, they didn't leave a needle in there, so one more stab with that fat access needle to infuse the antibiotic and antineoplastons. Leo is obviously so much, much tougher than I am that seconds after this ordeal he was smiling and asking for pizza, which of course he got and enjoyed.

Tomorrow, Wednesday July 19, 2006 at 9:30am at The Clinic we expect to come face-to-face withe antineoplastons for the first time and start Leo's healing process.

7/17: First Day at the Burzynski Clinic

2006-07-17T21:35:00.000-06:00

We went to sleep a little late last night and Leo woke-up "on time" this morning, at about 6am, playful and happy. We managed to keep him quiet for a little while, but that ended much sooner than we would have liked. Dr. Szymkowski called asking us to come sooner, so Leo picked-out a nice, new button-down shirt, new socks, and pants. He prefers to wear pants lately, instead of shorts, and there was no convincing him that it was going to be insanely hot today. Regardless, he looked as cute as ever.

We got to the clinic without any issues and everyone knew who we were before introductions! The reception area -- and every other wall -- was covered with pictures and stories of survivors. There were pictures of children with Presidents Bush (Senior) and Clinton; before-and-after diagnoses, and various collages. After countless forms, we were taken to a large conference room and met with Dr. Szymkowski. She explained various aspects of treatment, including an overview of the regimen: 22 hours of infusions per day (4 hours per cycle) via a 2-channel pump. Leo will be getting 2 antineoplastons: AS10 and AS2-1. We aren't quite sure of the di\fference yet, although she did explain, and will post here when we "get it." She said she couldn't quote an exact prognosis and that Dr. Burzynski, himself, would talk to us shortly. The few things I do remember her quoting were general side-effects and their statistics. Dangerously high sodium levels were present in about 5% of the patients. Dangerously low potassium levels were less frequent. White blood cell counts dropping were even lower than the potassium levels, so we're talking 1-2% or something like that. The other side effects were the similar to everything: nausea, vomiting, etc. The good thing is that all these seem to be manageable.

She also told us that Saturday's MRI did not provide the good news we originally thought. Although the overall size of the tumor has not increased, there was more "enhancement" than before. This seems to mean that there is more aggressive tumor activity than before, as shown by its metabolism of gadolinium (the stuff enabling enhancement) during the MRI. Obviously this was very upsetting, but the bright side is that more aggressive tumors are supposedly easier to treat than less aggressive ones. Continuing, she said FDA approval was no longer required because of the disease progression, more "good" news. Internal Review Board approval was still needed, though, and is expected by close of business tomorrow. The most important question was whether there was an issue of "if." She said there were no "ifs." Treatment would begin; it was now just the matter of Wednesday morning or Wednesday afternoon.

Then we met the man himself: Dr. Burzynski. He looked exactly like the photos we'd seen and said something to the effect of our coming here was for "hope," which is something the oncologists, radiation oncologists, neurosurgeons, and other medical staff at home and other places can't provide. He exuded confidence, but not arrogance. He gave us a glossy brochure of a couple of recent studies that showed statistics about antineoplaston treatment in children under 4 with instrinsic brain stem tumors that were presented at a neuro-oncological conference:

Complete response (no disease): 30%
Stable disease: 40%
Progressive disease: 30%

Those numbers are incredible: instead of about 2-5% chance of Leo surviving, their statistics show something like 70% survival! We understand that there are no guarantees, but we'll take odds like this anytime over the traditional ones!!! Antineoplastons are gene-based therapy, meaning their belief is that there are certain malfunctioning genes that make people susceptible to cancers. Unfortunately there is no genetic test at this point to validate that, but someone's working on it. The fear is for Anna and Nina, as well as Leo's children. For now there's no sense in worrying about anything except Leo getting better soon. Also, their longest-term survivor has been cancer-free for over 20 years.

After lunch we discussed finances and Leo got a physical, although again they couldn't draw blood from his venus port! We met Dr. Weaver who did a basic neurological exam and is one of the main people at the clinic it seems. All we have is a blood test tomorrow, so we're going to try to find something fun to do the rest of the day in this oven.

I was right in the morning; the car was intolerably hot when we got in and I almost burned my hands on Leo's carseat buckles and the steering wheel. The inside really cooled-off a few minutes before we reached our hotel and Leo was exhausted by then, but still had enough energy to throw a full pack of pull-ups all over the floor. We laughed and he punched me and had fun until he got quiet and just passed-out. It wasn't a long day today and we realize those are still to come...

7/16: We're in Houston!

2006-07-16T22:26:00.000-06:00

Leo is doing pretty well today. Speech is improving, but not the walking. He's still eating A LOT. Today Leo went into the bathroom, closed the door, and decided to do his business on his own! What a grown-up! He later did allow Marina in to help finish the job. Lately he's started "petting" us and has been really playful and fun, with the occasional jab or left hook to my head. Maybe it's a sign that he really does feel better. His cheeks are bigger and puffier than ever and it'd be really cute if it weren't under these circumstances.

After a usual, stressful pre-flight morning, our Southwest flight left a bit late but landed early. Leo was AWESOME on the flight. No complains, not too many Plane Crackers thrown all over, just a great flight for everyone. He was tired and even took a little nap. In Houston, Thrifty Rent a Car wanted to charge us almost 100% in taxes and fees but I managed to talk them out of it. I'm not kidding: $280 for 2 weeks would have cost $530 after fees and taxes! I made them an offer they couldn't refuse, but the fees and taxes still wound-up being somewhere around 40%!

It's hot as hell down here! We got to our Crossland Extended Stay place and it may be an entire notch, but not 2, above a hostel (maybe). It's a tiny room with a single full-size bed for the three of us, but it'll do. So it's a similar situation as at home -- the three of us on the same bed -- except that Marina and I will probably wind-up falling off at some point during the stay. Obviously we have internet access, but if you really want to hear great Leo's progress will be or how hot it is down here, our direct line is: 281-759-2000, press 1, then enter 7654.

We got a fortune cookie today at Midway Airport that said something to the effect of our wishes being granted this month or meeting our goals this month. We pray every day for the same, singular goal of Leo being cured. That's all we want.

Appointment tomorrow at 11:30 at the Burzynski clinic. Stay tuned...

7/15: No Major Changes 1 Day Before Houston

2006-07-15T20:38:00.000-06:00

That's what this morning's MRI's preliminary results said. I'm being very cautiously optimistic here, in case there's any doubt. That TPA drano-style cleaning was done as well with successful results afterwards of being able to draw blood. It seems just about everyone at Lutheran knows my Father now, because he's the one that actually made this appointment happen. Not only were we told not even to wait in the waiting room when we showed-up, not only was everything ready for us when we came into outpatient/ambulatory surgery, but this was the first time in my life that, get ready, a medical visit started early!!! Incredible! They actually went according to schedule the rest of the day and it didn't seem that even a minute was wasted. How sad that these are the types of things that excite me nowadays, other than Leo having another "good" day.

Later, before laundry and packing, we visited Marina's clients who are traveling to Israel in a week or two. We handed them a little note to place in the cracks between the stones of the Kotel (Western Wall in Jerusalem), Judaism's holiest site, begging G-d to spare Leo.

We hope our prayers will be answered in Houston, which is just 1 day away...

7/14: Fresh, Sweet Peas

2006-07-14T22:21:00.000-06:00

Leo and I picked and ate a few green peas this morning. Leo and Nina dropped the entire little envelope of dried peas into the ground a while back and most of the little plants that sprouted now have pods. I think Anna decided that morning to visit some of the grandparents, knowing that Leo and Nina would share in their future bounty. I'm not positive that the peas had fully ripened, but the pods were big and plump and shiny. The peas were slightly crunchy but then sweet like honey. We're hoping for a bumper crop, which will include cherry tomatoes and cucumbers as well!

Today was a better day for Leo. His symptoms did not seem to get worse; in fact, possibly even a little bit better. Maybe it's because instead of trying to cut the decadron pill exactly in half, for a 2mg dose, I cut it slightly off center for a little bit more. I don't know and I don't care because today was a "good" day. Of course that does mean I have several new bruises and that glass jaw of mine is becoming bulletproof, but that's a small price to pay. I think Leo may have even eaten more than I today, which seems like it should be a good thing, but not necessarily because he's still terribly constipated and his abdomen is hard. But he ate a bowl and a half of cold beet borscht, which should help.

Before the peas actually, home nurse Pat came again. She's Indian, but born and raised in Jamaica and is very nice. She tried to get some blood for another test, but without luck, so she suggested "cleaning the line" with TPA. For you medical school dropouts, that means to clean that semi-permanent IV thingie in Leo's upper chest with something that dissolves blood goop/sludge (those are technical terms). Supposedly various blood cells decide to stick to whatever they can and restrict blood draws, although the flushing and antibiotics are fine. She said it's similar to plaque forming in arteries. Anyway, this generated about a hundred phone calls among Drs. Kroin (Leo's pediatrician), Goldman (the hemotologist/oncologist at Children's), and Goodell (hemoc at Lutheran). Goldman thought it was silly for us to drive all the way to Children's and said to call Goodell at nearby Lutheran. By the time Goodell's office returned my message telling me they wouldn't do this because Leo isn't their patient, it was too late to go to Children's, especially with Friday traffic. So Dr. Kroin helped get this set-up after Leo's MRI tomorrow morning at Lutheran, but for some reason I'm not holding my breath. Update 8/31/2006: The following image shows a scan of the letter from Dr. Goodell (click on it to enlarge):

Nina got a 101.6 fever, which also scared us for a bit, but some Ibuprofen cleared that right up and she was as playful as ever, as evidenced by her generous use of the word "nyet" ("no" in Russian) said very frankly. I think we're now paranoid about every fever, every cough, every fall, every everything...

I spoke to Katya's uncle Arkady tonight, who is a wealth of knowledge and promised to provide even more information and research, in addition to all those researchers, analysts, and investors. Unfortunately Katya's latest MRI didn't provide the good news everyone was hoping for, but she hit the median survival time for DIPG, a major milestone! It's actually getting hard to follow-up on all the research, especially because it's so technical and there's so much written on almost every topic. I feel homework coming on for the Grandparents, among others, to follow-up on all this research while we're in Houston.

Dozens of people have insisted that we provide a way for people to donate. So there's now little PayPal icon now among the links. We are not one of those 501(c)(3) organizations although someone offered to help set-up one (and I'll probably take him up on that offer). That means that, as far as I know and I'm far from being a legal or tax expert, these "donations" are not tax-deductible and may have to be considered as gifts.

We must've had a really good day because Leo is laughing in his sleep while I'm typing this. Good night.

2 days 'til Houston...

7/13: Getting Ready for Houston

2006-07-13T20:45:00.000-06:00

Leo's symptoms aren't getting any better, but Houston is 2 days closer! I spoke with Dr. Szymkowski down there, who agreed it'd be a good idea to come Monday instead of Tuesday, so the Southwest Airlines tickets have been purchased for a flight Sunday afternoon, Extended Stay America room reserved, and Thrifty car rented at a very nice discount. Thanks so much to my old friend Joe and his wife Connie for helping me get in touch with Yvonne, who helps people coming to Houston for medical treatment. Going to spend most of the time starting tomorrow with preparations and packing. Leo's MRI was moved to Saturday early morning, thanks to Granpa Leonid, instead of Friday afternoon. This is a good thing because Leo has to be sedated, which means he can't eat for 8 hours and drink for 4 hours beforehand!

The banking contacts are tireless (that's why they make the big bucks)! Venture capitalists are providing all sorts of leads, as are old and new friends at Bank of America, Merrill Lynch, and UBS. Unfortunately I found out about a 4 year-old girl in Oregon that was diagnosed almost a year ago with the same pontine glioma as Leo. So, so sad. Her name is Katya; visit her link to read her story. Hopefully her uncle, Arkady, and I will be able to swap research...although I'm sure he'd covered all of my bases a long time ago.

3 long days to go...

7/12: Becoming Overwhelming

2006-07-12T20:12:00.000-06:00

Leo's symptoms aren't be getting any better and we're very worried. He spent most of today at Grandma Bella's. He didn't drink very much and came home to home nurse Pat, who was here to change his venus port. I came home right after all the fun, but both Grandmothers, Mom, and Pat said he did well. I don't know whether that means they are happy to have survived that ordeal if Leo is happy to have survived. Either way, one new venus port access (needle) installed. But Leo wasn't exactly Leo...something seemed wrong. During the day Marina and I started thinking that maybe it's hydroencephalitis (water on the brain that causes worsening and new symptoms). Maybe it's coincidence, but at the exact moment Leiann, from the Yahoo Antineoplastons group whose son James has been treated by Drs. Goldman and Burzynski (http://www.caringbridge.org/in/james/), called, Leo started eating and drinking! He started walking and talking (not perfectly, but we're not asking for perfection right now) and laughing and smiling! Leiann: thanks for that positive energy by-phone! He took the decadron without a fight and seemed to have relaxed a bit. But he was exhausted and went to bed early, with his toy shovels of course. We just can't wait to get to Houston, to some clinic, to some doctor, to someone that can help our little Leo and tell us that everything will be alright, that will he will be great. That damned infection really threw a wrench into our "plans." How we wish we were somewhere already and Leo was being treated.

Speaking of the Yahoo Antineoplastons group, all of the children, families, and stories are indescribable. Ones where the child didn't make it are just overwhelming. I can't stand that unwelcome thought and have to give it a few minutes to fade -- and it always does. In some way, it provides guidance and a strange sort of focus that I can't easily describe. Reading those stories is hard. Really, truly, incredibly hard. But I do. Don't know why, just do. Maybe it's to imagine those parents not suffering anymore...maybe it's to pray that no one suffers the way they have.

The main time I have to write this is just after all the kids have gone to bed, with Leo laying in the middle of ours. Usually Marina and I are exhausted after trying to play with all 3, feed them, clean-up, change, bathe, etc. Now, neither of us complains of being tired (maybe because the Grandparents and everyone else have been helping so much). To be so out of control, so dependent, so helpless, and so hopeful while watching Leo's newly-found puffy cheeks is surreal and maybe just "being" here, now, living for the next smile is enough.

Some of the investment banking contacts are coming through. One put me in touch with the top guy at Duke, who said Dr. Goldman provides excellent care, which we know, and to stay the course. We just don't like the odds traditional treatment provides. Another friend is contacting venture capitalists that invest in companies searching for a cure, so we're trying to cover all the bases. One of the VCs reiterated her knowledge of and respect for Dr. Goldman.

After a lot of grief I managed to schedule 2 MRIs for Leo, one Friday afternoon @ Lutheran (with help and advice from my cousin Irena, who ironically is an oncological nurse there) and one Monday morning @ Evanston Northwestern Hospital. I'll keep ENH until we're done at Lutheran just to be safe. Travel planning is underway.

On a work note, I've been at work for roughly a week now since Leo's diagnosis. Had a couple of frank chats with my boss this week. I have never experienced the kind of compassion and understaning he has expressed over the last few days. I've read about and heard of great leaders (presidents, generals, religious figures, etc.) but know I was in the presence of another one today. In fact, the same goes for my entire team and even people that I hardly know at work. I am truly very grateful.

5 days 'til Houston...

7/11: Symptoms are Getting Worse

2006-07-11T20:04:00.000-06:00

Although today was generally uneventful, it is now nearly impossible understand what Leo says -- and he's a blabbermouth! The sounds come out as if he had a really, really stuffed nose; "p" sounds like "n" and Marina and I are really the only ones that seem to have any idea what he's trying to say. Sometimes the words do come-out okay, but only after several difficult attempts and as if Leo was giving it one last shot, with all the strength he has. We've figured out that it's better to ask yes/no questions when he can just nod or shake his head to answer. The walking is just as bad. Leo now seems to prefer to sit, instead of walking or running. When he does try to walk, it's just for a few feet and he has to be very closely watched. His attempts at walking look like a robot's first steps. Anna and Nina, both 2, can walk, run, and climb much better than Leo, which is a scary thought. All symptoms seem to get worse as the day wears on, probably as he gets more tired.

On the other hand, his mind is still very sharp and he's still fighting -- these are good things. He remembers promises made to him days, if not weeks, ago. He can still do puzzles, match objects with pictures, knows how the remote controls work, how trucks work, etc. It's just the motor skills, it seems, that have been visibly affected.

I had trouble scheduling an MRI with sedation for Leo for our trip to Houston. Dr. Kroin has been a tremendous help and we should have this issue resolved tomorrow.

Some friends at a hedge fund had a great idea: they sent e-mail to equity researchers/analysts that work in biotech/pharma to see whether there are any new or innovative trials on treating pontine glioma among the companies they cover. This hedge fund's contact sent stuff about various new trials, which I've never seen, except for the radioactive scorion venom. I did the same and asked friends at Merrill Lynch and UBS Investment Bank to see if they can get any info. UBS should provide some good leads because they have such a huge international presence. Maybe someone somewhere heard of some company with something new and unique that can help. I plan on creating a list here to let everyone know of any and all leads we find, but so far the majority have said to contact the standard sites, like cancer.org, cancertrials, St. Jude's, etc.

6 days 'til Houston. I can't thank everyone enough -- even the shortest notes of support or encouragement help. Thank you all.

7/10: No More Infection

2006-07-10T09:45:00.000-06:00

After an uneventful Sunday, we went home today. All the blood tests/cultures since the first one have been negative so Leo's venus port can stay in, we can go home, will had a home health nurse visit us to show how to administer the antibiotics, which is a no-brainer, and will be going to Houston next Monday night for our first appointment next Tuesday at 11:30am. We'll need to do another MRI Monday morning, right before leaving. I spoke with Dr. Szymkowski down there and she mentioned that Dr. Weaver is probably going to be the one who treats Leo.

I got 2 stories on Leo's infection. Both doctors/stories agreed that a) this bacteria is very common; b) lives in each of us; c) that the best way not to spread the infection is to very thoroughly wash hands all the time; d) most likely the cause of infection was the port. Dr. Oram, of infectious diseases, though said that this bacteria lives in the intestines. This may mean that because Leo has been so constipated for so long, there's some chance that the bacteria multiplied, got out of control, and caused an infection 0f sorts. The other doctor, whose name I won't mention, said that this bacteria lives on our skin, not in the intestines. I honestly don't care who's right as long as Leo's better, but 2 doctors, 2 stories...

Leo is getting back to his normal self -- he woke up at about 5am and decided to get in a few good slaps and punches while I was doing my best to sleep on this awful thing they call a hospital bed. He ate breakfast that grandpa brought him, not the disgusting bacon and egg buscuit sandwich provided here (I think they're trying to ensure future business via the meals). We played with trucks and crayons in the playroom and Leo's fighting off sleep as usual now, so I'm just waiting for someone to ignore my "do not disturb" sign, come in, and make sure he doesn't rest. The first to ignore it was the home nurse coordinator, followed almost immediately by a nurse who asked if that silly speech therapist could come back (guess what I told her).

When Anna and Nina saw Leo, they gave each other the biggest hugs we've ever seen! The girls always ask, "Where's Leo" (in Russian) , and it was so nice to see this instead of sibling rivalry. They even played pretty well the rest of the evening.

7/8: Enterobacter Cloacae

2006-07-08T19:43:00.000-06:00

That's the name of the "gram negative" bacteria that caused Leo's infection. He's getting 2 antibiotics appropriate to treating this specific infection and will continue these for about 10 days. There's even a small chance he may be able to go home as soon as Monday if all the blood tests starting last night remain negative. Thankfully they no longer draw blood from his hand and can just use the venus port. Today, in addition to family, Leo had visits from:

Dr. Joy de Master, a pediatric resident
An infectious diseases resident
Dr. Oram, the infectious diseases attending
Dr. Mittleman, an ophthalmologist who said Leo's eyes are just fine
Dr. Kroin, Leo's pediatrician
Anna Marx, a "speech therapist," who showed and got us a can of something called, "ThickIt," which makes liquids thicker. Since Leo's been coughing a lot, especially while drinking, there's the fear of stuff getting into his lungs and causing pneumonia. So they haven't been giving Leo normal juice or milk, but thickened versions, which look gloppy and goopy. Anyway, they look and taste revolting, since Leo refuses to even take a sip... Smart boy.
Countless nurses and their aides

So he got no rest whatsoever, but seems happier and more active. His speech has definitely improved as has his mood -- he got a few good punches into my jaw and gut, which means he's clearly feeling better.

Last night's blood cultures, drawn from his hand and port, returned negative. This is great news. That culture needs to remain negative, as do the ones taken today and tomorrow, and he should be home Monday.

7/7: An Infection Stops Everything

2006-07-07T15:51:00.000-06:00

That trip to the ER got Leo admitted and it looks like he's got a fairly serious infection from/with the venus port called "Gram Negative." They're going to keep him there, possibly for 2 weeks (!) according to Dr. Rhonda Orem, who is an infectious diseases specialist there. In reality, it may only be a few more days, since the culture results should come back tomorrow (Saturday) and they know the specific bacteria name that's trying to make a home and how to treat it. Most likely we will get a nurse to come to our house to administer the antibiotics via IV. In the mean time, not only do they draw blood from the venus port, but also from one of his hands, so the torture continues.

On the other hand, yesterday (Thursday) I got a call from Dr. Szymkowski asking us to come to Houston for an evaluation (no FDA approval yet). We had an appointment on Monday and she suggested we plan on staying for the 3 weeks. So Houston is out for now because their protocol says no infections.

What about the tumor? No radiation and no chemo, what do we do? Dr. Szymkowski says that even if he were undergoing radiation and chemo, they would have stopped that even, so this doesn't seem like just a little cold. But Dr. Chang doesn't want to hear about any of this and honestly believes that traditional treatment is all that Leo needs. Marina spoke to him a few days ago and, in summary, he said that even if we wanted to come back to him, he would not treat/radiate Leo. Today he stopped by the hospital and handed Marina a typed letter on Lutheran General letterhead to that effect. I will scan the letter and post here for everyone's enjoyment. Update 8/31/2006: Click on the following image to see a larger scan of his letter. I have underlined my favorite portions in red:

Marina spent the first night at the hospital (and almost went batty because no one had any answers or their answers were wrong) and I spent last night there. Leo is a real trooper -- they had to draw blood from the venus port, which is a non-event, but also from his left hand. He hardly cried...and only for a few seconds. He's eating well and is still trying to have a little fun, and although his speech has gotten worse over last week, it is actually much better today.

Everything again is in shambles..

7/5: Our Medical System is a Mess

2006-07-05T15:39:00.000-06:00

Leo is off all "treatments" now, except for the decadron. We need to start antineoplastons soon! Had a horrible night, though. Leo woke up at about 11pm with difficulty breathing. He threw-up all over me, but still didn't feel better, so I took him to Lutheran General ER. They did a CT scan, x-ray, and blood tests. No changes in anything, except that his calcium and potassium levels dropped tremendously, so he was going to get those via IV until morning.

First day back at work today. Everyone is very supportive. Several hundred e-mails in two+ weeks of absence, but luckily no fires -- just some smoke.

Spoke to Dr. Szymkowski and it turns out they need all of Leo's medical recods. Just asking for these wasted several hours today. At least Lutheran General said they'd do it today and actually did a few hours later. No disclosures, no nothing, faxed straight to me. Children's Memorial, though, what a mess. I needed to get their disclosure on-line after being told that it'd take 7-10 days and fax back to them. Spoke to Stephanie @ Dr. Goldman's office, who said she'd help if there were any delays and then the Medical Records people said they should be able to do it much sooner...like tomorrow morning. We'll see. I'm sending Grandpa after them!

I work in IT. After Leo gets through all this, we will start the journey of becoming the richest person in the world by fixing the medical system in the US. It's no wonder costs are spiraling out of control and nothing gets done. I welcome everyone with ideas.

6/18-7/4: How Did We Get Here?

2006-07-04T20:32:00.000-06:00

Father's Day, June 18, 2006: Leo's walking has become somewhat unbalanced and he was the type of kid climb up and down anything and everything without even thinking about it, so we called our pediatrician, Dr. Kroin. She said we needed to go to an emergency room to get him checked-out and decided to go to Children's Memorial in Chicago. After doing basic neurological tests, a CT scan was done with Leo under sedation (he's a fighter and needed a double dose and woke-up in half the time) that showed a tumor (cancer) in his brain stem, in a region called the Pons. This region has a role in basic functions like swallowing, breathing, balance, etc. Leo was admitted into neurosurgery. Marina spent the night with him at the hospital, while I drove home in a trance. Father's Day will never be the same...

Monday, June 19, 2006: after being woken-up hourly during the night to do vitals and neurological tests, an MRI was done, again with Leo under full sedation, to get more details. The exact diagnosis was inoperable pontine glioma, as circled in white on the MRI:We met Dr. Stewart Goldman, who told us the horrible, inconceivable news: Leo had a 5% chance of survival beyond a year or so. A true death sentence. People who actually get a death sentence survive for years, but Leo was not being given years. We were completely devastated, an extreme understatement. Leo was moved to hematology/oncology. We were told about the trial that Dr. Goldman was conducting: 6 weeks of radiation (daily, except for weekends), combined with chemotherapy consisting of daily oral Thalomide and Carboplatin intravenously every four weeks. There is one kid that survived for 4 years and another 8. Option number 2 was radiation without chemo. Option 3 was palliative care. Either way, Leo had to start taking Decadron/Dexamethasone, a steroid that would reduce swelling in his brain, but make him swell everywhere else, increase his appetite and aggression, and other side effects. I convinced Marina to go home for the night.

Wednesday, June 21, 2006: Leo slept with us last night; we didn't even try to put him in his own room. We got Leo's prescription for Decadron today and have started giving it to him. Since he's seen us take pills, he had no problem. It is incomprehensible to see a 3 year-old child taking pills... We went to Lutheran General Hospital in Park Ridge and met his radiation oncologist, Dr. John Chang. Actually, he's out of the office today so we met one of his peers, Dr. Tanya Powell. She was very nice, as were nurses Linda and Francis. They gave Leo toys, played with him, and turned on a video while we spoke with the doctor. She described Leo's radiation treatment. It would start with us coming back tomorrow to the ambulatory center for them to fully sedate Leo because another CT scan was required, as was a mask for his face/head. During each treatment, Leo would be fully sedated, the mesh mask would be screwed into the table to hold his head perfectly still, and a few minutes of focused/localized radiation beamed into his tumor. Our home and cell phones don't stop ringing, but they don't interrupt Leo watching "Batman Versus Dracula," while sitting in his little Batman chair, dressed in this Batman Halloween constume (mask, cape, and all)!

Thursday, June 22, 2006: We went to the hospital to get Leo's mask made. That venus port helped a little bit, but recovering from anaesthesia isn't fun for anyone. At least we're starting. Still love that Batman versus Dracula. It's very violent, but we keep explaining that Batman the good guy is trying to defeat Dracula the bad guy.

Friday, June 23, 2006: Leo has been sleeping with us since we came home. Last night he asked to go to his room, which was very surprising. After a few minutes, we heard noises outside our bedroom door. Marina checked and there he was, camping at our door with his pillow, blanket, a sippy cup with something to drink, and a big grin. This morning, we heard of Sifu Keith and Sifu Kevin. They claim to be monks from Thailand that have helped people with various forms of cancer and other diseases. I spoke to them, described our situation, and they said they'd call back. Tickets on Southwest were about $1200 for the 3 of us; the girls would stay with Marina's parents for the weekend if we went. Kevin called, told us to come, and gave us all the details. We spoke with one of the guys he treated, who said that he has been feeling better since going there. So $2500 for this "treatment" plus travel expenses. I booked a 2:10pm flight from Midway to Islip/MacArthur Airport on Long Island and made all the other arrangements. While we got ready, Dr. Val the Chiropractor stopped by to give Leo a toy Spiderman, and even though Leo wasn't impressed, he wanted to take it with. We got cash as requested and sped to the airport, but traffic was insane. We got there at 1:50, not enough time to park, but enough for Leo and one of us to make the flight. We decided I would be the one to take Leo, but as luck (or fate) would have it, the Southwest flight, on a beautiful, warm, perfect sunny day was delayed by an hour, so all three of us could go. Leo was great on the flight and entertained some of the people around us. We rented a car and went to this martial arts place in Westbury, New York. To make a very long day longer, we had a nasty dinner at TGI Friday's and began treatment at about 11:30pm on a passed-out Leo. We were told that a bad spirit was making Leo his home; naturally the spirit would have to be asked to leave. We went to bed at 2am. A very, very long day.

Saturday, June 24, 2006: We were told to have breakfast and then go to Westbury for more treament at Sifu Keith and Sifu Kevin's home. For breakfast, Leo was supposed to have Cocoa Puffs with soy milk and pickles, but the diner recommended to us didn't have these on the menu, so chocolate chip pancakes had to do. During the treatment, Leo was taken upstairs, cried for a bit, but then calmed down. It lasted a bit over an hour and Leo was exhaused. We were told to go to Nathan's Famous Hot Dogs place for lunch, have Leo play some of the carnival games there, get some rest, and come back to the martial arts place. Leo was exhaused, so we took a nap, but then woke-up and did as directed. Leo's treatment started about an hour after we got to the place and we were asked to leave, but watched from the outside. He wasn't happy at first, but eventually relaxed and didn't resist. Afterwards, we were told more of the mystery. In a previous life, Leo was a bystander to lynching of slaves and that one of those slaves wasn't forgiving him for not helping. The Thai exorcism would be very complicated and we were told that Sifu Keith, who had been doing all the treatments, would have to call his Master in Thailand over night to get help. We were to come back at 8am Sunday to their house again, but that Leo would be fine and live a long life..and have 2 sonds of his own. That statement gave us so much hope that we were willing to believe and do just about anything.

Sunday, June 25, 2oo6: We got to the house at exactly 8am and someone was already being treated, a dentist who had lost control of his hands and arms. Even at the martial arts place, there was always someone being treated ahead of us, always looking very seriously ill, usually cancer. A treatment similar to the first was held, but this time we were all present. Marina and I were told that the slave that Leo watched lynched forgave Leo overnight, with some convincing from the Master in Thailand by phone. Marina needed to have more (male) children; we were given a macrobiotic-style diet to follow, but pork was ok; what colors to wear and have at home; good luck charms and trinkets; etc. We don't know, but one thing was for sure: Leo was walking much better, talking better, stopped drooling, and generally seemed happier, especially given the circumstances. We caught an earlier flight home, which got us back on-time because of delays, filled with hope.

Monday, June 26, 2006: the oncologists were giving us the full-court press to start treatment, but because those Thai monks gave us so much hope, we asked for another MRI, making no one but us happy.

Tuesday, June 27, 2006: Leo had his MRI today. We're praying for good news.

Wednesday, June 28, 2006: Leo was scheduled for radiation prepartion today, starting at 1pm. Again, since he would have to be fully sedated, he couldn't eat all morning, but the steroids were making him ravenous, which wasn't fun. So of course all the nurses were asking how his appetite was, knowing that he'd be hungry, which he was. The irony is because of the sedation, he couldn't eat! After all this, we made frantic calls to find out about that MRI. Finally we found out that this fast-growing tumor did not grow in about 9 days! Those Thai monks must've done something! But we'd need radiation anyway, which would start tomorrow at 7:30am.

Thursday, June 29, 2006: First radiation at 7:30am. One of the brilliant nurses decided his venus port access (needle) needed to be changed. I suggested they sedate him first and do this while he was asleep. "No," she said; this had to be done beforehand, with me lying on a gurnee and Leo sitting on top of me. She was able to remove the access while Leo did his best to do bodily harm to her, but couldn't get another one in. The first needle she tried bent and the second wasn't in properly, so they had to give him sleeping gas, which would take all day and night to wear off! The actual radiation procedure didn't last long, but still took time until he got over the sedation, etc. Someone forwarded us information about Dr. Burzynski (http://www.cancermed.com/) who does a non-tradiational (i.e. not radiation or chemo) treatment out of his clinic in Houston, Texas using something called antineoplastons. What's all this?

Friday, June 30, 2006: Second radiation. While Leo was gorging himself on breakfast afterwards, I called Dr. Burzynski's clinic to get information and Stephanie said she'd send us something. I told her we couldn't wait and that we needed to speak to someone as soon as possible, which she said she'd try to arrange. First chemo at Children's Memorial today. At this point, Leo was ok. Playing, good mood, etc. after the sedation wore off. We were at Children's from about 11am until just past 5pm. After vitals, introductions, etc., Leo was hooked-up to an IV and pumped full of liquids (not the chemo) for an hour. Then the Carboplatin was started for another hour. Finally another hour of liquid to flush-out the poison. In the mean time, we were given prescriptions for about 5 more drugs, each addressing some side effect or another. He ate Chicken McNuggets and french fries, drank, watched TV, and generally was in a good mood, but very tired. We didn't realize what was to come... Late at night, I found Dr. Burzynski's patients' web site (http://burzynskipatientgroup.org/) with several success stories about children with similar conditions as Leo's. I e-mailed some of the parents.

Saturday, July 1, 2006: Oh My G-d, what did we do!?!?!? Leo wasn't eating, drinking, or moving. He was not the Leo everyone knew and loved. No spirit, no energy. They said there'd be side-effects, but this is ridiculous! We didn't think he'd survive this ordeal every four weeks for 2+ years! I got a response from one of the parents I e-mailed last night about Dr. Burzynski, Patty. Her son was 20 when diagnosed, was treated for about 2 years, and is now 25, graduated college, moved to a different state, bought a house, and seems to be living a normal life. Patty also recommended Leiann, another parent whose child was going through the same treatment and it turned out Leiann's son also was a patient of Dr. Goldman prior to antineoplaston treatment and that Dr. Goldman was familiar with it and Dr. Burzynski.

Sunday, July 2, 2006: Leo is still not himself today, although he's eating a little better. Still no energy, wants to be held by me non-stop, and just doesn't seem happy. Spoke to Leiann today and this antineoplaston treatment by Dr. Burzynski in Houston seems more promising than the chemo/radiation hell Leo has withstood so far.

Monday, July 3, 2006: Leo is better today. Eating ravenously again, but still extremely tired. I got a call from Stephanie at Dr. Burzynski's clinic, who said she'd spoken to one of the doctors, who would be calling me this week. Again, I said I couldn't wait and actually got a call from Dr. Barbara Szymkowski, who was very nice and described the process. She told me that because Leo had had radiation already, there was a chance he'd have to wait before joining their trial, but she'd check with Dr. Burzynski, himself. She called back later and said an exemption would be requested from the FDA because of Leo's condition and age. We should hear back by Thursday evening. Having seen the side-effects of chemo, read about the long-term effects of radiation, and remembering the horrific odds we were given, we have decided not to follow Dr. Goldman's trial. We know we're taking a huge chance, but the basic statistics/evidence we read on Dr. Burzynski's web site offerred much, much better odds. If that doesn't work, we can always try one of these horrendous radiation/chemo studies -- unfortunately they'll probably be there for quite a while. Needless to say, the radiation oncologist, et al were very unhappy about our decision. We're praying for antineoplastons to work. In the evening, Leiann called again and Marina spoke to her for a while. The only issue seems to be money. It may cost upwards of $400,000 for a multi-year treatment (in addition to monthly MRIs, weekly blood draws, etc.). Needless to say, we'll find the money one way or another, since insurance probably won't cover the cost.