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

Tuesday, March 16, 2004

Cycle 3, Day +5: Cancer Sucks

Cancer sucks. Really. Truly.

We sit here and try to gain some sort of meaningful experience out of what is going on, we carry hope, but the bottom line is, it still sucks. Big time.

Cancer in your child, the flesh of your flesh, the little person in your image that is supposed to be your heir, the person that will bury you, take care of all your affairs, and inherit your wordly goods, that sucks even more. Truly it does.

The words of a good friend of mine that lost one of her two boys to a brain tumor three years ago echoes in my head, "How do you go from a family of four to a family of three"? I pray to God I never have to find out. As Jesus prayed in Gethsemane, "O my Father, if it be possible, let this cup pass away from me."

Another acquaintance of mine emailed me today and asked me about Steven's tumor pathology and I got it out and read it again so I could respond to her. I hadn't read it since Christmas, every time I read it I am sunk into despair, I feel the unusual nature of his tumor pathology does not make it a good candidate to respond well to this treatment, that there is no good treatment for this tumor, the pathology is inconclusive.

Then I look at him, he's doing well, and I think what a blessing that is, what a treasure he is.

I ran into the mother of Jacob, the little boy in the same trial as Steven who was hospitalized for fever last Friday. He is out of the hospital now, his blood counts are up, but he had his hearing test today, and it shows that he has lost considerable hearing in one ear. She was trying to figure out if she should request that the cisplatin should be reduced or omitted next cycle, he could lose more hearing, or it could stay the same, is the cisplatin needed for a cure, will the tumor recur anyway, are the negative effects of the chemo worth it?

Nobody can say. Dr. Gajjar is on vacation, but I gave her his email address, he almost always responds no matter what hour or where he is, so I told her to email him.

Steven's hearing in one ear was impaired before we started. His post-chemo hearing test will be next week. Will this be an issue for us too?

My father will be celebrating his 80th birthday later this month.

In the shuttle bus on the way back from the hospital today, Steven told me, "I want Grandpa and Grandma to live at least until Grandpa turns 102 and Grandma turns 98. I might have kids by then, and I want them to see their great-grandkids."

I was charmed, at the same time I felt like he'd punched me in the stomach.

Because it seems so far in the future, we haven't discussed with him yet the great probability that, as of the beginning of his chemo, his own biological kids are not in his future. We can only pray he makes it to the day where that issue arises.

Steven is neutropenic as of today, his blood counts plummeting as expected. He is also feeling sick, nothing to eat all day, congested nose, but no fever.

Tomorrow is his second dose of chemo (vincristine), done outpatient in the medicine room, also very likely he will receive blood. If a fever shows up, he will be hospitalized.

Cancer sucks.

- Kathleen


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