Grayson Bray Morris

Not the Best Night Ever

28 Sep 2007

Yesterday seemed to be a better day for my daughter. She was downstairs for about two hours in the afternoon and at dinnertime, and Opa came up and played games with her for a while before dinner. She drank a glass of chocolate milk around 1:30 PM, downed some chips and salsa around 4 PM, and ate several bites of chili and rice at dinner. That’s more than she’s eaten in days.

The chili and rice came back up in stages throughout the night. The Zofran honeymoon seems to be over.

She had Zofran at 6 PM: five hours of relief, three hours too soon for another dose at 11 PM. After the 12 AM upchuck, I gave her more Zofran anyway. That got us to 3 AM: far, far too soon for another dose. So we gave her dexamethasone. It seems to have worked; no more vomiting so far (at 10 AM). I just gave her more Zofran and dexamethasone, and I’m hoping the double whammy will do the trick till this afternoon, when she can have more.

I was curious why the Zofran is helping her nausea, since it’s not stomach-related but medulla-oblongata related (where her new tumor is). This is what I discovered at Wikipedia:

Ondansetron (INN) (IPA: [ɒnˈdænsɛˌtrɒn]) is a serotonin 5-HT3 receptor antagonist used mainly to treat nausea and vomiting following chemotherapy. Its effects are thought to be on both peripheral and central nerves. One part is to reduce the activity of the vagus nerve, which is a nerve that activates the vomiting center in the medulla oblongata, the other is a blockage of serotonin receptors in the chemoreceptor trigger zone.

The clinical effect of ondansetron (and other drugs from the same group) can be potentiated by combining it with dexamethasone.

My plan is to giver her Zofran and dexa together three times a day (that’s her prescription for each, though she’d recently eased back to twice a day on the dexa). When that stops working, I guess we’ll up the frequency to four times a day, assuming her doctor gives the okay. Zofran is meant for short-term use (five days), though I haven’t found any information on adverse affects related to long-term use. And frankly, unless “long term” means “more than two weeks,” I’m not sure we should be concerned about long-term effects.

After reading about the vagus nerve, I think I’m actually glad all we’ve got is vomiting:

The vagus nerve supplies motor parasympathetic fibers to all the organs except the suprarenal (adrenal) glands, from the neck down to the second segment of the transverse colon. The vagus also controls a few skeletal muscles, namely:

This means that the vagus nerve is responsible for such varied tasks as heart rate, gastrointestinal peristalsis, sweating, and quite a few muscle movements in the mouth, including speech (via the recurrent laryngeal nerve) and keeping the larynx open for breathing.

This probably explains why her speech is so hard to understand now, and why she often chokes while swallowing. I really, really, really hope she isn’t going to start having trouble breathing.

Slow and Steady

30 Sep 2007

The Zofran-dexamethasone double whammy seems to be working well, if not ideally. It’s keeping the vomiting away, but my daughter still feels nauseated in waves throughout the day.

I got excited when she woke at 6 AM for the first time all night—it’d been 12 hours since her last Z-d dose. Twelve hours between doses would be great (this isn’t candy she’s taking). My excitement was premature, however; she threw up the pills right after she took them. In fact, she probably woke because she had to throw up; she didn’t need to pee.

But that’s the first throwup since 3 AM Friday morning. And last night she ate all her grilled cheese sandwich at dinner. Woo hoo!

We’ve ramped up the home health care. Starting tomorrow, they’ll be coming three days a week to spend 3 hours with her, playing games or otherwise interacting, plus two days to wash her. (I’ll keep doing the “bottom wash” in between.) Most wonderfully, they’ll be coming three nights a week for the whole night, 11 PM to 7 AM. And we can add in the other nights whenever we decide we need to.

Overnight Help

2 Oct 2007

We had our first overnight home health care visit last night. Sonja came at 11 PM and stayed until 7 AM, handling medications and everything else during the night. Being the first time, I of course had trouble sleeping, but my husband slept wonderfully—great news, since he bears the brunt of the nighttime wakings.

Argh

3 Oct 2007

My daughter threw up at 3:30 AM, just 3.5 hours after her last Zofran-dexa dose. Sigh. Dinner’s spaghetti, half digested, came back up. It’s pretty disheartening to see her finally getting some food in only to watch it be ejected hours later.

This was the first “breakthrough” vomiting we’ve had in several days, though there’s been a funky pattern going on: Friday, Sunday, and Tuesday mornings she threw up at about 6 AM. I’m beginning to wonder if the Zofran and dexa really have all that much to do with when and why she throws up.

Melanie and Jolanda (say “Yolonda”) from home health care were here yesterday and today, respectively, for three hours in the mornings. They gave my daughter a quick washing and played Sorry with her. Yesterday, she slept most of the afternoon and came down for an hour or so at dinner; she seems to be following the same pattern today. On a positive note, she’s been eating dinner with us the past several nights, albeit less than she used to eat.

I estimate she’s awake no more than 5 or 6 hours a day now.

This morning she refused her Zofran and dexa when I woke her for it at 8:30 AM, even after I reminded her what it was for. She refused again at 9:15 AM. At 9:40 she was ready to take it—whew. Refusing medications is something the brain hospice site lists waaaaay late in the game.

Jolanda will be back for night duty at 11 PM. I’m hoping to sleep better this time around.

Poop!

4 Oct 2007

After ten days without pooping, three days of Importal (Colace), and a desperation Dulcolax left over from the US supply, my daughter finally let it out this morning. I’m hoping that will help her feel better; the brain hospice site says retaining bowel movements can also cause nausea and vomiting. And that’s been ramping up again lately.

She threw up twice yesterday (at 3:30 AM and at 5:30 PM), then had a quiet night. She didn’t call Jolanda (the home health care nurse) at all. Jolanda left at 7:15 AM; my daughter threw up at 8:00 AM. I wish she’d have her rocky nights when home health care is here. But I’m glad she was able to sleep through the night (as was I).

She should have started her period again last Sunday, but there’s no sign of it yet.

An Anniversary of Sorts

7 Oct 2007

Yesterday, October 6, marks the one-year anniversary of my daughter’s first MRI. She’s made it over a year since then! I credit the radiation and chemotherapy with all the extra good months she’s had.

She seems to get a little bit worse each day. Yesterday she came down for brunch and I played a few games of Sorry with her. She drooled constantly from the right side of her mouth; I hadn’t noticed before how pronounced that’s become. She’s confused if you speak too quickly, and sometimes confused if you don’t. All her movements have become slower. She often doesn’t seem to grok what we ask her to do, such as “move your right hand” when pushing her up to the table. She’s starting to get confused on days of the week and times of day.

Yesterday afternoon she called me (via intercom) and said she was feeling sad. We talked for quite a while about her illness, and that she’s dying. She’s known since the end of May that she’s terminal, but yesterday she seemed surprised when I said it. She asked how long she had; a week, a month, a year? I said probably a few weeks, and again her look of total surprise. I’m surprised to see that she apparently doesn’t realize how much she’s declined recently.

We’re trying an experiment with the Zofran and dexa, as she continues to throw up at random times once every day or two. We’re going to keep giving dexa three times a day (9 mg total), but stop the Zofran for 24 hours. If nothing changes, we’ll keep to that schedule.

Edited to add: We gave up on that plan 16 hours in, after she threw up three times in the space of a couple of hours. She’s back to Zofran and dexa three times a day.

Mappa Mondo

9 Oct 2007

We took my daughter to the Mappa Mondo children’s hospice in Waalre (just south of Eindhoven) yesterday. She’ll be there until Thursday morning, when we’ll pick her up and bring her back home. Her dad and stepmom flew in this morning to spend today and tomorrow with her.

The Mappa Mondo house is absolutely wonderful. Staff and volunteers are friendly, gracious, efficient, and understanding. The house itself is gorgeous: two merged and renovated turn-of-the-century houses right on the market square in little Waalre, with ornate high ceilings and here and there original mosaic floors and stained glass. The whole place exudes a homey peace and tranquility. I wouldn’t mind staying there a few days myself.

We arrived just before 2 PM yesterday. After a cup of coffee (and a glass of orange soda) in one of the two living rooms, we took the elevator upstairs to my daughter’s room. She settled into bed and we unpacked her things, including some photos of her brother, sisters, and Charlotte. She channel-surfed on the TV for a while; later, she watched about 15 minutes of a Harry Potter DVD from home. Around 5:30 PM we headed back downstairs for a delicious dinner cooked by Dorien and Bea, this week’s volunteers. Mappa Mondo volunteers spend a full week at the house, sleeping there from Friday to Friday, doing the laundry, shopping, cooking, and cleaning, as well as engaging with the children staying at the house. There are also several staff members around each day, including at least one nurse 24/7.

With all the excitement, my daughter slept much less than usual, and halfway through dinner she was nodding off. My husband and I helped her get ready for bed and tucked her in, then tiptoed back downstairs for a cup of coffee with nurse Annemiek, Dorien and Bea, and J, the mother of a 16-month old who lives at the house. We stayed about an hour, and good thing we did: my daughter threw up just before 9 PM. We helped Annemiek change her sheets and get her settled back into bed. After another 20 minutes downstairs, we finally left; it was hard to go despite feeling she’s in excellent hands.

The house, while connected, has two distinct living areas. One is for up to four children who live at the house; the other, for up to four children who come for a temporary stay. Right now there are five children, my daughter plus four babies. We had the dining room on the west side to ourselves, a thoughtful touch from the staff, who are aware that noise and commotion bother my daughter.

The four babies at the house have various maladies, ranging from being born much too early to various rare syndromes. My husband and I were particularly moved by J and her little girl. Despite a healthy and uneventful pregnancy, the baby was born 8 weeks early and has an extremely rare chromosomal aberration. She has a breathing tube (cannula) in her neck, does not see or hear well, and lags far behind developmentally. She sleeps poorly and requires nearly constant attention; while we were there, J suctioned her cannula several times. Parents must follow an intensive training in order to take care of babies with this kind of tube. Single, 21-year-old J took care of her daughter all alone for the first year. I don’t know how she survived it. Since April the baby has lived at the Mappa Mondo house; J spends three days a week with her, finally getting some time for herself, to work or go back to school. She deserves it. If you’re wondering what kind of cause to donate to, consider giving to the Red Cross to fund more of these homes.

J said you see all kinds of things in the Mappa Mondo house, things that make you realize your problem is nothing. That’s exactly how I felt watching her baby. There are worse things than losing a child after 15 years of normal life.

Symptoms

15 Oct 2007

My daughter mostly enjoyed her stay at Mappa Mondo (the bed was harder than hers at home, so she didn’t sleep as well). She gave it a so-so (flat hand tilting back and forth) when we asked, but she was very glad to see her dad and stepmom.

We brought her home Thursday afternoon. The trip upstairs to her room was the last time she’s been out of her bed other than to use the potty chair. She mostly doesn’t want to come downstairs; the two or three times she’s said yes, she’s changed her mind before she was even sitting up. She’s dizzy a lot, and position changes make her even dizzier. She’s also very tired. And her ability to help push herself to standing is disappearing. If it goes completely, we won’t be able to get her to the potty chair; getting downstairs will require a stretcher and a second strong pair of arms. At that point I doubt we’ll move her anymore; it’s already quite hard on her.

We’ve increased her dexamethasone to 12 mg a day (from 9). It seems to have possibly increased her appetite just a bit; she ate several bites of food twice yesterday. It hasn’t had much effect otherwise. The vomiting still seems to be really random; some days she throws up just once, some days multiple times, apparently unrelated to the timing of her Zofran and dexa doses. But the two drugs do seem to reduce the frequency.

Saturday she peed in bed and didn’t notice. Since then no more accidents, but starting Thursday she’s been having more and more difficulty telling when she needs to pee, and actually peeing when she feels she has to. This frustrates her, feeling like she has to go but nothing coming out.

She’s developed a significant amount of mucus in her mouth and throat; she sometimes talks with a wet rasp and often clears her throat. When she brushes her teeth, strings of clear mucus span the gap from her mouth to the toothbrush, like thick wet strands of spiderweb.

She’s having nonspecific pain, where she doesn’t feel good but can’t point to what hurts. Surprisingly, she isn’t having headaches; it’s the rest of her body that seems to ache. She winces when we move her to change her clothes or help her get comfortable. Since Friday morning, we’ve been giving her paracetamol (acetaminophen) suppositories; she can’t get the pills down anymore. They seem to help somewhat with the achiness. The next step will be morphine, either in skin patches or a subcutaneous pump.

She and I have been playing about two games of Sorry each day; she’s too tired for more. Sometimes when I suggest it, she doesn’t even want to play. I’ve been massaging her legs, feet, and hands daily with a yummy raspberry lotion. And, of course, scratching her back.