Update from Keith: February 19th, 2008

Taylor's homecoming last week was not quite the magic elixir I had imagined it would be during those dark, tense nights at the hospital in previous weeks. Taylor simply will not eat and it is difficult to watch her waste away. She has lost 20% of her body weight and her bones are protruding. She has gone from being even chubby to where she is now emaciated.

We try everything we can can to persuade her to eat. There is nothing off limits to her. We offer candy, milkshakes, donuts, anything. Treats previously off-limits to her are now available at her every request. Except, of course, she makes no such requests. I have never heard a child so derisively dismiss the offer of treats.

Sometimes we beg her to eat; sometimes we threaten her with dire consequences if she doesn't eat; sometimes we scold her into eating--nothing works. We've told her that continued refusal to eat will result in the doctors putting a tube down her throat to deliver nutrition, but it doesn't sway her. She makes clear she wants no part of that fate, but she reamins unwilling to do the only thing which will prevent it--eat. It turns out a mouth scalded by daily radiation treatments simply can't be cajoled into eating.

I have known that three steps forward (coming home) usually means some steps back (starvation) but this is especially hard to take. I can handle watching her throw up; I even learned to handle watching her struggle to breathe, but I can't watch as she wastes away. I hope and pray that she turns soon.

I learned another lesson about cancer over the weekend: even 5 year olds realize that it is awful. Despite my constant attempts to improve her attitude, she seems depressed. Her failure to eat leaves her devoid of energy which keeps her in bed, which keeps her feeling down. We are trying everything we can think of to get her out of bed and distract her from her condition. She attended the SC-UCLA basketball game with me this last Sunday and enjoyed it. Kirk had to carry her down the stairs of the parking structure and I had to carry her back up, but otherwise she enjoyed herself. She got some new SC hats and even ate a little bit. We only lasted for the first half, but that saved us the rush of traffic at game's end along with the indignity of losing. I thanked her for sparing me that experience.

Things are not all bad. Charlie loves having us all back together again. That has been a wonderful by-product of Taylor's return home. He is much happier than in previous weeks and it makes us happy to see that.

Today Taylor went back to the hospital. It was a planned return as it is time for her chemotherapy again. Wonderfully, she was in great spirits. Tonight she ate a bag of Cheetos (we will stock up on that at home so if anyone local reading this fails to find a bag at their local store, just know that the shortage is due to a good cause). She also had some of a chocolate milkshake and some french fries.

Her treatment is clearly having some beneficial effect. We are still some 8 or more weeks away from a scan which can show us definitively what is happening to the tumor, but the outward signs are fantastic. Her nose no longer discharges blood-tinged mucus and she can sniff. This morning she smelled my cologne which took me by surprise (I didn't put on all that much, I swear). For the first time in more than a month, she sleeps quietly. She slept in our bed on Sunday night (cancer kids get special privileges, especially when it is 3:15 and they otherwise refuse to go to bed) and did not snore at all (I cannot say the same for myself, but one problem at a time). Thus, we know that her treatment is achieving some great results, but it only serves to make her lack of eating that much harder to take.

I fear that her eating won't improve until well after radiation finishes next month. I'm not sure her body can wait that long.

I'm off out of town again. Last week it was Memphis Wednesday-Friday, this week it is New York. It's therapeutic for me to concentrate on other problems and these trips more than deliver on the opportunity to do so. Still, I know that it makes things hard on Kris and I spend my down time thinking of T and her fight and dreaming of days to come when cancer will be a distant memory. Unfortunately, that remains a long time away.


Anonymous said...

Hey guys,

Your blog is beyond any words…I feel so helpless sitting here in Pittsburgh…but by reading it I can see the progress that Taylor is making.

Sleeping through the radiation…Kristin,you and I know how wonderful that is…Taylor will never have to remember it…and it is WORKING!!!

My love and very best thoughts are with you,