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

Wednesday, September 24, 2003

Wish Us Well...

... And pray for us. We need it.

We're leaving on Sunday for Memphis, for treatment at St. Jude's. One of us will stay in Memphis with Steven, the other will stay at home to try and keep home together and my first-grader Sean in school. With this treatment and based on previous research, Steven has a 70% chance or so of his tumor not coming back, which is a good probability in the world of malignant brain tumors.

The search for the best treatment and the best place around here is over. St. Jude's takes care of everything, we never see any bills. They bill our insurance and they cover everything that isn't already covered.

Steven receives whole-brain and spinal radiation, to start no later than October 8. We will be home for Thanksgiving, for approximately 4 weeks, then back to St. Jude's for the high-dose chemo portion of his treatment, which will last until the end of April or so, during most of which time he will probably be hospitalized and in isolation due to what is basically a lack of any immune system. With luck his blood counts will come up and we will get to come home by the end of the school year.

The whole-brain radiation is terrifying. Radiation causes brain damage. Steven was born with malformed ears and hearing on only one side, as well as growth issues, cleft palate, and a host of things. The chemo may take what's left of his hearing. Making a decision for which treatment he should have has been far and away one of the most exquisitely painful decisions any parent should ever have to make, and we are drained with trying to come to terms with the decision to treat our apparently healthy child with radiation and poisons that may permanently take away his intelligence, his physical abilities, his ability to father children, and his hearing, in a setting far away from our family, church, friends, and neighbors.

The next time you see those people on TV asking for money for St. Jude's, consider making a donation. They are a class organization that helps those in real need.

And don't forget: Brain tumors are the number 1 cause of cancer death in children, exceeding leukemia. I pray every day that my sweet little boy beats the odds, or even better, that somehow he and I could switch places, and that this would be my battle and not his.

Kids are supposed to bury their parents, not the other way around. We're terrified, trying to place our trust in God that things will turn out for the best, but that "peace that surpasses all understanding" that is supposed to come with prayer is eluding us for the moment.

- Kathleen

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