7/31: Liquid Diet...When Awake

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

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

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

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

7/30: Water, Water Everywhere...

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

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

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

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

7/29: No News is Good News

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

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

7/28: Needle Change

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

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

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

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

7/27: Hooray for TPA!

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

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

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

7/26: Changing of the Guard

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

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

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

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

7/25: A Mixed Bag

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

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

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

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

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

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

7/24: Port Problems

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

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

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

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

7/23: Increasing Both Antineoplastons

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

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

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

7/22: Finally an Easy Day

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

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

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

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

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

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

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

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

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

7/20: First Dose Increase

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

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

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

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

7/19: Antineoplastons Day 1

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

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

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

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

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

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

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

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

7/18: Not a Fun Day

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

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

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

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

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

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

7/17: First Day at the Burzynski Clinic

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

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

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

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

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

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

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

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

7/16: We're in Houston!

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

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

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

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

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

7/15: No Major Changes 1 Day Before Houston

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

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

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

7/14: Fresh, Sweet Peas

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

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

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

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

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

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

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

2 days 'til Houston...

7/13: Getting Ready for Houston

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

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

3 long days to go...

7/12: Becoming Overwhelming

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

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

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

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

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

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

5 days 'til Houston...

7/11: Symptoms are Getting Worse

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

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

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

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

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

7/10: No More Infection

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

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

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

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

7/8: Enterobacter Cloacae

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

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

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

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

7/7: An Infection Stops Everything

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

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

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

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

Everything again is in shambles..

7/5: Our Medical System is a Mess

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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