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

Wednesday, October 22, 2003

Radiation: The Next Step

Today was the final day of Steven's craniospinal radiation, so no more lying on his stomach with the chin support he finds so uncomfortable. The final day of radiation leaves him with a few of the temporary side effects-- mild nausea in the evening after dinner, a sore throat (caused by the spinal radiation beams), weird food likes and dislikes. For now, he won't touch sweets of any kind.

His hair has been thinning for a week, but magically, yesterday (Friday) some new threshold was crossed and he lost almost all of his hair in one day-- it's coming out by the handful. His scalp is horribly sensitive, especially in the area where his incision was-- a slight breeze will cause him severe discomfort if it moves his hair. He's so sensitive it's difficult even to cut it.

The manager at the Ronald McDonald House offered me a hair trimmer to give him a buzz cut, but somehow he still wasn't quite ready for something quite that severe, so he and I go down to the closest place I can find, a beauty parlor with a definite southern flavor.

A wonderful middle-aged black woman named Maxine cuts Steven's hair. I show her his incisions and the areas of his head where it is super-sensitive. She washes his hair and the sink ends up full of hair. She takes a lot of time and care with him, and cuts his hair really short and somehow does a decent job of making it look OK. An hour later, we are leaving and she tells me, "there will be no charge". I said, are you sure, and she says firmly, "no charge".

We hug each other long and hard and she says, "You take good care of him, just promise me you'll bring him back here for his next haircut."

The next day, Saturday, he has lost enough hair overnight that it looks like he may be ready for that buzz cut after all, but for now we're sticking with hats, 2 hair cuts in 2 days seems like too much. At his current rate of hair loss, he may have that buzz cut by Monday without needing to use a hair trimmer.

My niece Kyra balled up her hair and put it outside for the birds to use in their nests when it fell out. We're sorry its the wrong time of year for that.

Starting Thursday, Steven began receiving focused radiation to his tumor bed, in his right frontal lobe. He's received 2 treatments, we have 16 remaining. The purpose of the whole-brain and spinal radiation is to kill any stray cancer cells in his cerebrospinal fluid, the focused radiation to his tumor bed is because most of the time when these tumors recur, they come back at the original tumor site.

His last treatment, barring any delays, will be on November 17. The doctor is still not saying exactly when we can leave. It is difficult to put into words how much we are looking forward to coming home.

We have received numerous cards and packages with gifts, a number from people we've never met, and a few of them from people that we aren't sure who they are. We are becoming notorious at Ronald McDonald House for the volume of our mail.

This means more to us than we can describe. We are working on thank-you's, and are making slow but steady progress. The support and prayers of our family and friends is helping to keep us afloat.

Thank you.

- Kathleen

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