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?

9/6: A Better Day

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

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

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

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

9/5: It Never Ends, Does It?

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

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

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

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

9/4: Symtpoms Getting Slightly Better

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

July 2006	August 2006

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

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

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

9/3: No News is Good News

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

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