Update from Keith: March 6th, 2008

Tonight is Taylor's 11th consecutive night in the hospital in this, her fourth stay at Children's. Her first stay lasted 22 nights, so this is not the longest stay she's had, but we'll probably be there at least another 5 or 6 more since she has chemo on Tuesday next week.

People ask me all the time what we think of Children's. I would not want Taylor to be anywhere else. They do nothing but treat kids. All of the doctors, nurses, technicians, etc. know how to treat kids. That is impossible to duplicate. Moreover, many of her treating physicians are experts in pediatric cancers and treatments. That also can't be duplicated. In addition, Taylor sees that all of the other patients are kids, too. She is not the only kid with cancer. I think this makes her feel a little better.

But, every day I go there, my stomach clenches. I can't help but feel some times that it is a nasty place. After all, my daughter has spent her most painful nights at that hospital. I lament every night she spends there.

The hospital also has a number of communication difficulties that I won't elaborate here. Suffice to say that the lines of communication between her health care professionals and us are often poor as are the lines of communication between many of the doctors treating her. We are constantly frustrated by this. The hospital also suffers from the same shortcomings that any teaching hospital possesses. As with everything cancer, we take the good with the bad. In this case, (as I hope with Taylor's treatments) the good far outweighs the bad. The bad just tends to stick more in our craw.

She routinely receives excellent care from her nurses on 4 West, nearly all of whom have treated her at one time or another. Last week, we had a substitute nurse one day who didn't work out so well. Taylor was due to receive an antibiotic that was supposed to be infused through her line via a pump over approx. 30-45 minutes. This corresponds to a rate of 70 ml/hr. The nurse accidentally set it at 770. The entire dose was in her bloodstream after no more than 2 minutes. T's head immediately turned red and she started scratching all over. She was reacting to the too-quick dose of the antibiotic. They immediately summoned 2 pediatric residents and an attending and administered Benadryl to stop T's reaction. It was a tense few moments but quickly corrected. To the hospital's credit, the nurse who made the mistake immediately summoned the appropriate doctors and everything turned out fine. Better to have it happen with one of her antibiotics than her chemo drugs. I now watch very closely as they set the rate on her pump.

Like all weeks at the hospital, this one has been a roller coaster. Monday started out well. She gained half a kilo over the weekend by receiving relatively small doses of formula through her nasal tube. She seemed to be tolerating it well and her temperature had remained at good levels. By Tuesday, we were starting to get ready to go home again. In fact, they changed her feeding from a constant rate to simulated "meals" spread throughout the day to get her body accustomed to what it would be like at home. Kris learned how to take care of her NG tube and we were ready for home.

That's when things turned. She threw up after her second "meal." That killed that idea. Wednesday was misery. Her pain was as bad as ever, she threw up again, and got a fever Wednesday night. Her heart raced all day long, beating 170 times per minute while resting. This is a strong sign of discomfort and trouble. They stopped her nutrition again and replaced it with pedialyte so she could get some electrolytes.

Thursday was much better. Taylor is off Morphine. It just doesn't work that well for her. She is in constant pain even with the constant morphine drip. They've tried various dosing amounts and nothing has ever been satisfactory. Kris pushed really hard to finally get them to give her something different. Now she is on Dilaudid which is another opioid but which has been more effective for Taylor, at least so far. To get her to judge her pain, they show her a series of faces that go from smiling and pain-free, to agonizing. Taylor is now accustomed to pointing to the one which describes her pain. Tonight, she pointed to the happy face which corresponds to no pain. I was pleased. Her heart rate is in a more normal range as well.

T was great this afternoon. We played in the playroom, brought Chutes & Ladders back to her room after the playroom closed (she won and we didn't even have to let her) and we played Spiderman dominoes for a while. After that, we read another chapter of Harry Potter and the Chamber of Secrets (Year 2 at Hogwarts for Harry) and she listened to her iPod. She even sang along to the songs (although it remains extremely difficult to understand her vocalizations).

There are 6 radiation sessions left. If we do them all as scheduled, next Friday, 3/14, will be her last (I'll be out of town unfortunately and will miss it). Hopefully, she will begin healing in the weeks that follow and I am cautiously optimistic that mid-April will see Taylor able to eat and swallow on her own.

For now, I think she'll probably be in the hospital for the foreseeable future. Her fever situation seems to keep fluctuating and her white cell counts remain quite low. Her nutrition is important and she seems to tolerate a constant rate much better than a "meal" which is all we could do at home. Plus, she has to be admitted for chemo next Tuesday in any event, so it seems unlikely to me that she'll go home before mid to late next week. Of course, communication being what it is around there, maybe they have already prepared her discharge for tomorrow without saying a word to us. It wouldn't be the first time.

Kris had a hard day on Wednesday witnessing Taylor's pain. She was able to go home for a few hours today but is spending tonight (Thursday) at the hospital. I'll be there tomorrow night.

My sincerest apologies for not updating the blog sooner. I know from hearing from many of you that you check it daily. Last week, though, was simply too tough. Nothing felt happy, no news seemed good. Worse, neither Kris nor I are getting more than 4-6 hours sleep at night and updating the blog is often that one extra thing that means 30 minutes less sleep combined with wrenching emotions as we leave the days past. Still, I resolve to do better in the future. It's always easier when, as now, things seem improved.