Luxuries
13 Dec 2006
Monday I walked for ten minutes through a cold December rain to bring my six-year-old’s bike home.
Tuesday I biked into a biting wind.
Wednesday I climbed onto a stool to coax a reluctant platter from the top shelf.
My daughter can’t do any of these things.
Close Scrapes
21 Dec 2006
It’s been more than a week since I’ve posted. A week full of difficult moments, but also a good week. Being home is wonderful. My youngest two children are happy and energetic, loving and silly. We’ve lived in our normal rhythm of work, school, dance class and scouting, early to rise and dinner at 6.
The contrast with my daughter’s life in the hospital is immense. Should I feel guilty about that? I don’t think so. She can’t choose to go home for two weeks of normalcy and come back refreshed. Does that mean I shouldn’t either? I don’t think so. What good am I to her—or to the rest of my family—if I use myself up?
My husband’s parents were with her last week. A week in which her laments that it’s too hard reached new heights. She is steadfastly refusing to take most of her pills—pills (we’ve all explained over and over) that are vital to her survival. Pills that prevent her dying from pneumonia. Pills that prevent her dying from a ruptured colon. Pills that replace thyroid hormones her body isn’t making now.
Her father got her through Friday’s radiation and told her to think long and hard during the weekend. He, her stepmother, her stepfather and I spent hours on the phone trying to decide if we should let her stop. I was so distracted after Saturday’s call that I lopped off the tip of my left ring finger while making dinner. (Just several layers of skin, no muscle or bone. In profile, it’s a moon a few days removed from full.)
You wouldn’t let a three-year-old stop. You wouldn’t force an adult to continue. What do you do with a fifteen-year-old with the mind of an adult and the emotional maturity of a preschooler?
Of course, it’s only an issue because we feel we’re probably just postponing the inevitable, and we’re not sure for what gain. Misery now and permanent losses to her memory, IQ, metabolism, and fertility—not to mention a right side that will never function again?
Sometimes life is not better than death. Is this one of those times?
Sometimes a few months savored are better than several years suffered. Is this one of those times?
Sunday evening, my daughter chose to continue.
I cannot adequately express my sense of relief.
My teary-eyed ex-husband hugged my husband’s parents as he thanked them for getting our daughter through this episode. My father-in-law had spoken earnestly with her throughout the weekend. It’s like a tournament, he told her. You’ve already fought and won so many games, and you only have a few to go. It would be a shame to quit now. I’d encouraged her, too; we all had. But she and Opa have a special bond. His words made contact.
This doesn’t mean she won’t want to quit next week, or even tomorrow. But now I know she wants to continue. I know that “let me stop” is an ephemeral plea based on current misery, not a well-considered choice about her future.
All Backed Up
23 Dec 2006
My daughter is severely constipated. She’s had a tube down her nose since lunchtime yesterday, first pumping out bile, then pumping in laxative. It will stay there until she poops, which could be today or next week.
I fail to see how this got overlooked. Her chemo medications are constipating, and she’s been refusing her Colace pill for days. This didn’t sneak up on anyone. Her every efflux and excretion gets recorded to the nearest hour. Why didn’t hospital staff notice this earlier?
It makes me feel angry and defeated. Angry, because this did not have to happen. It was completely preventable. Defeated, because last week my daughter almost hit the wall. This is the last thing she needs.
I wish they’d come in at, say, day four and told us they’d have to stick this tube in her nose and leave it there for a few days if she didn’t take her Colace. Early enough that the situation could right itself if she’d just start swallowing the little orange gel pill on schedule. Her short-term memory is poor, so we’d have to hold up the pill and tell her about the tube every time. No problem; that’s what family is for. But we didn’t know. We assumed the staff were on top of things.
Her father told us she keeps trying to take the tube out. Picking at the tape on her nose, saying “Just for five minutes.” Let’s hope she poops today.
Quick Results
24 Dec 2006 | Christmas Eve
The tube is out—she’s pooping! Resolution came yesterday morning.
Tomorrow we fly to the US again: my husband and two youngest children on one flight, I on another. They’ll rent a car in DC and drive down to NC, bunking down somewhere along the way and arriving Tuesday morning. I’ll fly directly to RDU, where my father will pick me up and take me to the hospital. If I don’t get delayed, I should see my daughter before she goes to sleep.
Christmas Visit Days One and Two
26 Dec 2006
All our flights were uneventful and on time. I saw my daughter for about half an hour Monday evening. She was happy to see me, and surprised (short-term memory problem? she didn’t think I’d be coming the night I arrived, though that’s the only plan I’ve ever had).
My husband and children arrived Tuesday morning around 10:30. We opened presents with my parents and sister at her house, then went to the hospital and opened more. My daughter had presents for us: chocolates for me, a T-shirt for my husband, Play-Doh and other toys for her siblings. I was touched by this. My mother told me my daughter had asked to go to the hospital gift shop to get presents; the first one she bought was mine.
My parents came up half an hour later. She’d already had her chemo for the day: double dose, vincristine and carboplatin. We all went to the hospital Wendy’s, then my parents left and the four of us accompanied my daughter to radiation. We left around 7:30 PM.
Her face is still round like a chipmunk’s and her hair is gone on the right side and the back, the places that rub against the pillow. The skin in the radiation zone, beginning just under her eyebrows and passing over her entire head and down her spine, is covered in red bumps and peeling skin. It doesn’t hurt, thank goodness. She still has her eyebrows and is hoping they won’t go–those don’t come back, I’m told.
She’s had two blood transfusions in the past week for her very low red blood cell count. They’ve given her more energy. She’s lost weight; I can feel sharp hipbones under her pants. Anorexia has kicked in as promised: she hasn’t eaten in four days. We worked very hard to get seven peas, two bites of chicken, two bites of stewed apple, and one bite of rice into her over the course of the day.
Her last radiation treatment is January 4; her last chemo, January 10.
Christmas Visit Day Three
27 Dec 2006
She seemed more down today. We did get outside twice, each time for about twenty minutes. Her new wheelchair has a headrest and a tray, which came in handy for playing Mancala. She’s enjoying her brother and sister. Children’s buoyancy is usually a good thing in situations like these.
A milestone: today was her last full craniospinal radiation. The rest will be targeted head radiation.
She took all her pills today, with much coaxing. Still no appetite; only a few bites of food made it in.
Her last radiation will be January 5, not January 4. Apparently this is a flexible thing, subject to even further change. I wish they’d told us that at the very beginning when they said “31 radiation treatments.” No one said anything about fluid dates. Don’t they know how important that final date is to the patient who’s trying to make it through? That it’s a beacon drawing them forth, getting them through the rough hours? We had to add a red square to January 5 on her calendar.
My husband and I are trying to work out what comes next. The apparent plan of action is for her to go to the Rehab floor during her six treatment-free weeks. We think it’s a death sentence not to let her leave the hospital for at least a few days first. After slogging through, not quitting, going the distance… she still doesn’t get to come home for a visit? I think that would be emotionally crushing. Surely we can get her a few days on The Outside to boost her spirits and replenish her emotional reserves.
Christmas Visit Day Four
28 Dec 2006
She was still sleeping when we arrived at 9:30 AM; she woke at 10.
The good news: she pooped again. The bad news: she didn’t make it to the bedside commode in time. Her poop was very watery and her pants got soaked; it ran all down her legs. Nurse Blythe changed her bed and I got her cleaned up. But it beats a tube down her nose!
Over the course of the day she had several sips of milk, a bite of pork chop, two bites of potatoes au gratin, one whole french fry, seven bites of banana pudding, ten bites of hummus, four bites of pita bread, and four sips (total) of three different milk-and-ice-cream concotions I made.
Part of this superior eating is the result of bribery: I told her I’d scratch her back if she ate the whole french fry instead of just one bite. It went right down. Aha…
She took all her pills.
I cut, filed, and polished her nails.
She did not have radiation today, though we did get wheeled down there. They had removed the first flexible mask she wore (for the head-only radiation) to avoid confusion with the mask for her craniospinal treatments, and now they can’t find it. Her radiologist explained the situation in great and technical detail; he even wrote it down for me:
She will have 3 additional treatments like the first 5, then a reduced field for the last 3 treatments.
The issue: she had one mask for the first five treatments when not doing craniospinal irradiation. That was discarded to avoid controversy with current mask being used.
Options: -1- Make a new mask and verify; for a simple plan, that’s OK. But for a complex plan (i.e., compensator), it’s not precise enough to remake the mask and verify.
Best option: -2- Keep the same mask and reregister the images onto the current plan (i.e., take original MRI and register on scan for craniospinal irradiation), and replan the last 3 doses and final 3 doses. This will make sure we can verify the true dose is delivered rather than have potential guesswork.
(Compensators are “essentially 3D filters made from aluminum or brass that attach to a radiation treatment machine and concentrate radiation specifically on cancerous tissue, saving as much surrounding tissue or bone as possible.”)
I’m all for eliminating guesswork. This pushes her radiation enddate out one day, possibly three (since January 6 is a Saturday—but the radiologist said they might very well just go ahead and do it on Saturday).
Mandy from PT came by and worked her through some exercises to strengthen her right leg. I’ve also been doing her stretches with her.
We got her up into the chair and out of the room for just one hour, but her mood was pretty good all day. She played chess with her brother (he won, so that may end that :-) ).