Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Friday, March 09, 2007

Her Blood On My Hands

Her name was Taylor. I never met her in person, but I could hear her sweet, high-pitched voice talking in the background while I spoke to her mother on the phone.

While we were getting ready to drive down the radio station for our Country Cares interview, a friend of mine called and gave me the phone number of a woman in Florida and asked me if I'd call her.

The woman was Taylor's mother. Taylor was diagnosed in the end of January with a similar brain tumor to Steven's, and she was trying to figure out what to do.

They weren't able to remove all of Taylor's tumor, and even after surgery there was more than one spot in her brain, as well as another possible spot in her spine. She'd already spoken to St. Jude and she had an appointment with Steven's doctor, Dr. Gajjar. She was scheduled to fly to Memphis February 19, the same day that we were there with Steven.

Because Taylor had tumor remaining after surgery, she fell into the "high risk" classification. Steven was considered "average risk" when he started at St. Jude because after surgery he had no visible tumor.

Whole brain radiation in a child is devastating. The radiation oncologist we consulted with at Children's Hospital Los Angeles shortly after Steven's surgery tried to reassure me about him having radiation by telling me that he'd most likely be able to care for himself as an adult. His intentions were good, but that comment still haunts me. Maybe we weren't being realistic, but we had our sights set higher than that.

High risk brain tumor patients at St. Jude receive a significantly higher dose of radiation than average risk patients. For a 3-year old, such a dose of radiation would most likely result in a very large IQ loss. A 3-year old receiving such a high dose of radiation would possibly not be able to care for themselves as an adult.

I recommended to Taylor's mom that she call and speak to Dr. Finlay in Los Angeles about the chemotherapy-only protocol he developed for children before she make a final decision about St. Jude.

Finlay was in the process of moving from New York to California when Steven was diagnosed, but we traveled to Los Angeles to consult with his representative before we decided how we wanted to proceed.

My fear with Steven was with the treatment. Finlay's treatment carries a 5-6% mortality rate from the treatment itself irrespective of the tumor, the doses of chemotherapy are so high that for some kids, their little bodies just can't tolerate it.

We so much wanted to avoid radiation if possible, but when push came to shove, I was too worried about Steven's existing medical conditions and his age (the really young kids tolerate the chemo better than the older ones) making him a poor candidate for the treatment. I had to ask myself whether I could live with myself if he didn't survive the treatment and I decided that I couldn't.

But if he'd been 3 instead of 9 it may have been a different story...

Dr. Finlay spoke to Taylor's mom and she was in Los Angeles when we got back from Memphis. I tried unsuccessfully to get in touch with them after we got back.

Taylor's mom called me late last night. Taylor started chemotherapy in Los Angeles on February 23. Four days later, on the 27th Taylor's mom decided to step out for a brief shopping trip.

When she got back, the nurse was changing Taylor's diaper and her mom noticed immediately that Taylor wasn't "right".

Taylor began having seizures, they put her on a ventilator, and a few hours later she was declared brain dead and they removed life support.

Just like that. Less than a week, Taylor didn't even last a week...

Taylor's parents and her 14-month old brother flew back to Florida yesterday. This time when I spoke to Taylor's mom she was sobbing and there was no sweet, high-pitched voice in the background.

If they'd just kept that appointment in Memphis I'm pretty sure Taylor would be still be here. The eventual outcome might have been the same, high risk patients have a very poor prognosis.

But when it comes right down to it, all we ever really have are gifts of time.

Rest in peace, sweet Taylor. It was never supposed to happen like this. I'm sorry, sorry, sorry...

For in much wisdom is much grief: and he that increaseth knowledge increaseth sorrow.
-Ecclesiastes 1:18

- Kathleen

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1 Comments:

Anonymous mary alice Dorschel said...

blood on your hands.
this I am sure of. if i had to do it again, at age 3, I have no question in my mind i would not do high dose, whole brain radiation on a 3 yr old. Kath, I am as sure of this as anything I can be..Liz was 9. . I have profound regrets some days still, and she can care for herself..still......with certainty, on a 3 yr old, I would not..
and with "routine" chemo, they nearly killed Liz...was so close they told me they had killed her bone marrow, in routine, no transplant chemo. ventilator, whole shooting match..fungus in every organ, why she lived only God knows. . determination i suppose.
you told them just what I would have. we are all responsible. let us share some of your guilt, as we love you..we all are together in this.

March 17, 2007 7:33 PM  

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