A Sign?

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

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

We Knew this Would be Difficult, but had No Idea

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

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

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

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

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

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

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

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

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

Funeral Information:

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

10/20: No Changes

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

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

10/19: If Only They Listened

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

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

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

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

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

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

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

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

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

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

In addition, Leo now has to take:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

10/12: Out of Intensive Care

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

10/11: PICU Day 3

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

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

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

10/10: PICU Day 2

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

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

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

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

10/9: Leo is in Intensive Care

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

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

Tests and results:

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

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

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

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

10/8: Got an Infection in the Hospital!

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

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

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

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

10/7: Not Home...

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

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

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

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

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

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

10/6: Still in the Hospital

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

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

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

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

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

10/5: Going Home?

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

Something strange has been happening here at the hospital:

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

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

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

10/4: Dr. Dubinsky

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

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

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

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

10/3: The Truth Comes Out

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

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

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

10/2: Leo Gets a Feeding Tube

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

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

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

10/1: We Know the Devil...

...his name is Decadron.

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

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

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

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

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

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