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.