Sleep and Recovery
14 Jan 2007
I slept about 30 of the first 48 hours I was home: awake for the two-hour ride from the airport, a little quality time with my husband, and meals. I guess I needed it, but I hadn’t expected it.
My daughter is doing well. She’s eating a little bit more each day and feeling hungry, though nothing sounds good. Her vomiting has slowed to a near stop. The increased dose of steriods is probably to thank for both.
Her dad and stepmom have taken her out to shop and brought in an art-major friend to do some painting. They’re playing lots of games, and it sounds like everyone is settling in to this major change. That’s great to hear.
Steady Improvement
16 Jan 2007
My daughter continues to eat more each day: Monday she ate a record 1/2 cup of macaroni and cheese, 6 strawberries, 1/2 cup of black beans and cheese, 1 cup of Chex mix, 1/8 cup of mashed potatoes, 1 ounce of chicken, 1/2 cup of salad, a few slices of tomato, and 1/4 of an orange. Not much for you or me, but an immense amount for her!
Coming Soon?
24 Jan 2007
Yesterday was my daughter’s first post-treatment checkup. Her platelet count is very low: 35 (150 is normal). The home-care nurse will draw blood on Thursday, and if it’s still very low, my daughter will get her fourth blood transfusion.
The nurse will also unhook her from her IV, to stimulate drinking. My daughter’s been getting 100 mL of fluids per hour round the clock; it’s no wonder she hasn’t been thirsty. Her doctor is hoping she can manage without IV fluids now, given her low platelet count (affected thereby) and her vastly increased appetite (a replacement therefor).
Alas, one of the common side effects of her treatment is difficulty swallowing liquids. Solid food presents no problem, but different muscles are used to swallow liquids and these have been damaged by radiation. Interestingly, speech therapy may be able to help her here.
She weighs 112.9 pounds, up from 111 on January 3.
She has PT on Monday, Wednesday, and Friday, OT the other two weekdays. They report it’s unlikely her right arm will improve much, but her right leg is getting stronger; with very intense rehab, she may even recover most of its function. That sounds marvelous!
At this rate, her doctor feels she’ll be ready to travel to Holland at the end of February.
Slow and Steady Wins the Race
7 Feb 2007
My daughter continues to improve. Her platelet counts, though doubled after last week’s transfusion, are still low (in the 60s to a normal of 150); she’ll probably have another one soon. Hopefully this one will be a full-blood transfusion, as she had an unusual and alarming reaction to the platelet-only version.
We should hear back on yesterday’s MRI in the next few days, but we’ve been forewarned it won’t tell us much. Most probably it will look worse, as the dead tumor tissue will show up more prominently.
She’s off the IV and back to eating normally, but liquids still vex her. Milk seems to work best. Her voice is stronger, but still quavery.
She works diligently with the therapist during her daily one-hour PT sessions, but (true to form) utterly lacks any intrinsic drive to regain the use of her right arm and leg. It requires present unpleasant effort that she just can’t seem to connect to a future reward (one more than worth the work, I might add—we’re not talking about getting dessert or a puppy or a trip to Hawaii).
We meet with the oncologist in Nijmegen on February 28, in time to plan rehab treatment and get a wheelchair before our daughter’s arrival in the first half of March.
First Contact
1 Mar 2007
We found the hospital in Nijmegen yesterday without a hitch (thanks, TomTom). Dr. Gidding, St. Radboud’s pediatric brain-tumor specialist, spent over an hour discussing my daughter’s file and answering our questions. Afterward, a nurse gave us a thorough tour of the clinic.
Dr. Gidding told us some information we hadn’t heard before: the long-term effects from radiation, including cognitive deficiencies, hearing loss, and hormone imbalances, will increase during the next two to five years. So much for my assessment after the end of treatment that my daughter had escaped the worst side effects. Her father and stepmother have remarked that her short-term memory continues to decline. We mentioned this to Dr. Gidding, who said that’s unlikely to be a long-term effect this early in the game; it probably stems from another source, possibly continued tumor growth, but by no means definitely.
We asked about prognosis and she said it’s impossible to put a number on my daughter’s chances, particularly since no one knows exactly what she has. She confirmed that we understood the nature of the tumor (high-grade, aggressive, malignant) and the two probable types (a high-grade glioma/gliomatosis, PNET). She said surgery is usually an integral part of treatment for a PNET, which of course couldn’t be done in my daughter’s case. She did not contradict me when I said everything I’d read indicated that a gliomatosis is basically a death sentence. Based on what Dr. Gidding has seen in my daughter’s file, she feels it’s not a lost cause, but there is every reason to be concerned about her chance of surviving.
We asked her what to expect from Tuesday’s MRI. She said that very rarely you’ll see a PNET tumor shrink, which is great. Most of these tumors don’t respond that positively to radiation, however, so what you hope to see is that it hasn’t grown. What you usually actually do see is a slight increase in size, which means nothing because it’s normally just a radiation side effect. Only over a longer time span can you see whether the tumor has been stopped in its tracks.
Dr. Gidding put to rest my fears that we were letting valuable treatment time slip by with every week my daughter remains in the US. Given her current (unusually) low platelet counts, my daughter is not yet ready for further chemotherapy.
We’ll speak again in two weeks, after the team has met to discuss the data (including the biopsy sample, which Dr. Gidding still needs to receive, and Tuesday’s MRI). “The team” includes an oncologist, an endocrinologist, a pathologist, a psychologist, a rehabilitation therapist, a surgeon, and others I can’t remember.
I left feeling comforted: a new hospital wing, spacious and light, and efficient, friendly, knowledgeable staff. I left feeling overwhelmed: soon we’ll be back in the medical circuit, driving an hour each way for regular consultations, labwork, outpatient treatments, and scans. As my husband said on the way there, this is a route we’ll come to know well. I left feeling miserable: there is a moment in every such conversation when the oncologist and the nurse look at you with intense, almost tangible, compassion, and that’s when you realize all over again that you have a child who is probably going to die.
Fourteen Days and Counting
21 Mar 2007
We have an arrival date! My daughter will be flying in on Wednesday, April 4th.
It’ll be a long day for her. After 10-plus hours of travel, she touches down at Schiphol Airport at 7:30 AM, which will feel like 1:30 AM to her. We’ll drive an hour and a half to get home (I expect several breaks along the way). At 3:00 PM a city worker will arrive to gather the documents for her residence permit and verify her identity. This must happen the day she arrives, for she is not medically insured in Holland until she’s registered with the city.
We’re joining a kruisvereniging (home nursing service) to gain access to helpful services, among them wheelchair rental to tide us over until she can be fitted for her own chair.
Five Days and Counting
30 Mar 2007
We picked up a wheelchair and a bedside commode for our daughter this morning. What a breeze: drive over to the home-care shop, tell them what you need, wait a few moments while they get it from the back, show your driver’s license, sign a receipt, and take it home.
Free of charge, mind you.
No forms to fill in, no mandatory doctor’s referral, no hassle, no waiting. We didn’t even have to join a home-nursing service first.
This is the beauty of socialized health care. Though it seems counterintuitive, socialized medicine engenders less bureaucracy than the American system. Over the past five years in Holland we’ve needed social services several times, and every time we’ve gotten help right away, free of charge, with minimal paperwork. This is how it should be in a humane society. I’ve no complaints about my taxes.
Zero Days… and Still Counting
4 Apr 2007
We hung balloons and streamers and a big “welcome home Meghan” banner before driving up to Lisserbroek last evening. My husband’s parents live fifteen minutes from Schiphol airport, very handy for meeting a 7 AM flight. We all trundled off to bed full of anticipation.
The call came about 2 AM. After two delayed flights out of Raleigh-Durham and a lot of schlepping back and forth between terminals C and A, my daughter and her father had been sent home. They’re rebooked on the same flight today; here’s hoping yesterday’s mess has been resolved.
We’re back in Eindhoven, sans our son, who preferred to stay at his grandparents’ for the day. (Our youngest had a much-anticipated birthday party to attend.) We’ve rescheduled the city to come tomorrow afternoon and filled in another absence request form for school. We’ll drive back to Lisserbroek this evening.
She’s Heeeeeeeere!
6 Apr 2007
We met my daughter and her father in the arrival hall around 8 AM Thursday. Two of the four boxes filled with her clothing and ‘stuff’ were awol; they’ll be delivered to our home this afternoon by Schiphol personnel.
The 1.5-hour drive home went smoothly. She was awake for all of it and in great spirits. We had lunch and began unpacking the two boxes that made it in. My husband carried her up the stairs to her room on his back; she was nervous about it beforehand, but it went without a hitch. Around 2:30 PM, as I scratched her back, she drifted off to sleep.
The woman from the city came just before three and took a peek at her, then gathered the forms to register her as a city resident. We’ll need to make a second appointment for the residence permit, but the city registration is enough to add her to our insurance policy as of today.
She woke at 5:30 PM and came back downstairs for dinner. By 7:30 she was dragging; after a brief chat with the neighbors, who brought her a small gift, she went back to bed. She woke twice to pee, but otherwise slept soundly through the night. She woke at 7:30 AM, bright and chipper, and had breakfast with her brother and sister before they went off to school. Right now she’s playing cards with Oma and Opa.
She’s much stronger than when I last saw her. She can sit entirely unaided and has regained significant control of her right arm (though nowhere near enough to use it productively). I don’t see as much progress in her right leg, but that’s where we hope rehab will step in.
I was a little shocked by her appearance, and I think the others (Oma, Opa, my husband, and her brother and sister) were too. The last time I saw her, she hadn’t eaten in three weeks and was down to 110 pounds (50 kilos). Now she’s at 128 pounds (58 kilos) and her cheeks are round as a chipmunk’s. My first thought was of all the photos of fat, smiling, bald, chipmunk-cheeked children with brain tumors I’ve seen in my travels across the Web in search of information. Between the steroids and the blow to her thyroid, hypothalamus, and pituitary gland from radiation, her metabolism is out of whack. On the upside, her hair just might be growing back in; her head is covered in a fine, thin, pale blond fuzz not yet a centimeter long.
We’ll spend most of Tuesday at the clinic in Nijmegen; she’ll have another MRI and we’ll meet with the oncologist, neurologist, and endocrinologist. Soon after, we should hear what the treatment plan is. Likely she’ll have more chemotherapy.
It feels really good that she’s here.