March 29, 2010
It’s steroid week… always a blast. Tanner is handling it really well, but it just stinks and that’s all there is to it. She is also feeling the effects of her monthly dose of Vincristine. She is having a hard time with her mouth burning every time she eats or drinks anything. I think this is a precursor to mouth sores, but Tanner usually doesn’t actually get the sores and the feeling passes in a few days. This time, however, it’s lasting longer so we’re loading up on the glutamine to try to prevent them from turning into sores. It’s particularly frustrating to her considering the steroids make her really hungry – talk about a catch 22.
She’s actually been pretty active this weekend, though. The good weather, combined with the lure of the kids playing in our cul-de-sac, outweighed the steroid apathy many times this weekend. We flew kites, played baseball, rode bikes and jumped rope. She even made it to school for a couple of hours today and to the play therapist’s for a much-needed anxiety download.
I’ve been a little burdened the last couple of days. The little girl I’ve been writing about, Samantha Abbott, died yesterday morning. She was 7 and such a cute little girl. She was in tremendous pain in the last weeks of her life and her organs finally shut down and gave up. Too much for a child to have to bear and for her parents to have to come to grips with. Just unfathomable.
In addition, I heard through the childhood cancer grapevine about another Vandy patient, a 14-year-old girl, who was just sent home with hospice care. She was given six months at the very best, but has since taken a turn for the worse and it will likely only be days instead of months.
These stories both sadden me and terrify me. They eat at the edges of my hope and deflate my confidence.
As John showed me the text message Sunday morning that Samantha had passed away, we just stared at each other for a moment, eyes wet. It was a three-second moment, but I knew exactly what he was thinking. Then, we choked it down wordlessly and moved on.
What else can you do?
Beth
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Beth,
I am a new fellow social worker with Denise Hensley at Church Health Center. She told me about Tanner, particularly because my daughter had cancer when she was 5 years old and was treated at St. Jude. I wanted to write to give you a positive outcome to keep in mind. My daughter is almost 21 now, very healthy, in college in Memphis and actually does volunteer work at St. Jude! She had a very tough year of treatment and was hospitalized many times, but she is just your normal (but very special to us, of course!) young adult enjoying college and her social life. I hope the same for Tanner. Just focus on having fun times when she’s feeling good! I’m sure Tanner makes sure of that! Best regards, Allison