Leo's Fund Approved by the IRS

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

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• Information is frequently out-of-date.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...

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

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?

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

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

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

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

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

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:

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

In addition, Leo now has to take:

1. Mylicon/simethicone (40mg 4 times daily) for gas pain
2. Levsin (0.125mg 2 times daily) as an anti-spasmodic for the GI issues
3. 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

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

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

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

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

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!

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...

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

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?

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:

1. 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.
2. 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!?
3. 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

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

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

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...

...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...

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

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

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

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?

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

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

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

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

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...

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

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

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:

1. A visit from Dr. Luck to look at the wound and tell us how to take care of it.
2. Since we knew Leo wasn't leaving so soon, we asked for a physical therapy consultation.
3. 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

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:

1. diflucan liquid for oral thrush
2. nystatin cream for diaper area thrush
3. decadron pills for brain swelling
4. pepcid pills (going to switch to prevacid chewables) against decadron's effect on stomach lining
5. desitin cream for butt redness
6. lactulose syrup for constipation
7. black elderberry extract syrup for immune system boost
8. colloidal silver as anti-inflammatory
9. 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:

1. 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.
2. 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.
3. 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?