Update from Keith: March 11th, 2008

As if cancer wasn't enough, Taylor has pneumonia now. The radiation scheduled for today, the surgery to get the port working scheduled for today, and the chemotherapy scheduled for today were all canceled because of this new danger. The good news is that the docs think it should be relatively easy to control. We're hoping she'll resume her normal treatment tomorrow (Wednesday) or Thursday at the latest. We were strongly hoping she'd come home at the end of the week. I don't know if that is still possible.

Last night (Tuesday) was a miserable night. T's hand was swelling where they had put in her IV Friday after removing the PICC line. This made it necessary for her to get a new IV, this time in the other hand. No fun for a 5 year-old (or even a 35 year-old). It seemed a temporary solution at the time since she was supposed to get her port today. Of course, as I mentioned above, that didn't happen.

Getting the IV was the easy part of the night. Taylor threw up at one point just after receiving a number of different oral medications through her NG tube. This required the feeding to be turned off for a while and the medicine to be re-administered.

Nights with T of late are hard. She retches (dry heaves) often into her bucket. Sometimes it culminates in full fledged throwing up, as it did last night. Most times, it is just another reminder of her discomfort and pain.

Last night her heart was racing all night long. She fell asleep readily but it was a fitful sleep. Frequent moaning was accompanied by thrashing about. She was clearly uncomfortable. Even while sleeping, her heart beat 170 times a minute. Her normal sleeping heart rate (normal meaning with cancer since we never needed to measure her heart rate before she was diagnosed) is between 100-120, usually closer to 120. 170 is off the charts fast for sleeping. Worse, when she awakened to use the restroom her heart rate exceeded 200. Clearly something was very wrong.

Usually we suspect her elevated heart rate is the result of pain in her body. That's been true most times in the past. But last night she consistently reported no pain (at least at the beginning of the night). I kept summoning her nurse and we paged the pediatric resident who came down a couple of times during the night. None of us could figure what was behind Taylor's sprinting heart. Finally, around 3, Taylor began exhibiting a fever. A chest X-Ray confirmed that she has pneumonia.

It's good that everyone thinks it is highly treatable and will clear up quickly. But the pneumonia is preventing her cancer treatments from continuing and we don't like that. We were so anxious for this to be her last week of radiation. Now, the hell in her mouth will continue past this week.

I feel like we've done nothing but take steps backward. Every time we feel we are getting the handle on something, something worse pops up and changes her treatment. Although none of this should affect her overall prognosis, it is emotionally wrenching for all of us--maybe T most of all. When she finally got out of the hospital in mid-February after her initial stay, I thought that we would never again be in the hospital that long (22 days). This is night 16 of this stay, and even if they give her chemo tomorrow she'll be there through at least night 18. More than 22 is still in the picture. It feels endless.

Someday this will be past. Someday the last 8 weeks will seem like minor bumps on the road to cancer victory. But right now it feels unmanageable; insurmountable; crushing. And it will mostly fall on Kris and T; I'm headed to NYC in the morning for work, not to return until Friday night. I'd like to believe that Taylor will be home when I get back, but I know better. Hope is in short supply of late.


Brooke said...

This roller coaster is going to end at some point! It will. I love T- she is the only kid I know who will throw up in a bucket one minute and continue singing a song the next, or sometimes do both at the same time!!!! Just to paint you all a picture, last night Taylor and Kristin were cuddling in bed together and they each had one arm up over their head and the other on their face-- 2 peas in a pod. It was the mother/daughter moment to end all mother daughter moments. They could have had a mirror between them, they looked so much alike. I just started to laugh, because it was so cute.

April said...

Taylor is such a trooper! As soon as that radiation is over she is going to turn a corner and things are going to improve for all of you. I can't wait!