Grayson Bray Morris

Gathering Speed

17 Oct 2007

My daughter continues to decline. Yesterday she was unable to stand at all with help from both my husband and me. Her agitation is increasing; she is more teary and less restful. This morning she cried after she asked for me and Jolanda, the hospice nurse, reminded her I was gone for a little while (my husband and I had an appointment with the hospital social worker to see about getting someone in to help my daughter sort through her feelings and fears during this phase of the process). It seems to calm her most if I lie next to her.

Irene and Annemiek from Mappa Mondo came by yesterday to see her and to talk about how she’d experienced her time there. We’d also planned to discuss a future visit, but Irene and Annemiek concurred that while she’s welcome at any time, it would be too hard on her at this point.

We’ve increased her dexamethasone to 18 mg a day (from 12) to see if it improves her quality of life. The brain hopsice website describes the benefits of heavy dexa dosing in the final stages, in adding quality days and enlivening the patient. Diane, who runs the site, was kind enough to give me very detailed information about what to look for, and how to know when enough is enough. Thirty-six hours into the dexa increase, I think we may be ready to say enough is enough. There’s been no improvement; she is not eating more, is not more lively, is not experiencing a better quality of life. The only effect (at least we think it’s a dexa effect) is that she’s having more difficulty getting to sleep, and it’s making her miserable. And the paracetamol suppositories aren’t helping ease her discomfort enough anymore. The aim of palliative care is to make the dying person as comfortable as possible; this isn’t it. When I asked if she was ready for morphine patches for pain and if she wanted something to help her sleep, she nodded yes to each; yesterday she just shrugged her shoulders to say “doesn’t matter to me.”

The next question, then, is whether to maintain a 9- or 12-mg dose or stop the dexa altogether, and what to do about the rest of her medications (Thyrax for her thyroid deficiency, Pantoprazol for stomach acid, phenytoine to prevent epileptic seizures). Dr. de Moel will be here this afternoon to discuss; I hope to get morphine and sleeping aids arranged then too.

Next Steps

17 Oct 2007

Dr. de Moel came by at 4:30 PM to see my daughter and determine the best solution to today’s new discomforts. He left us prescriptions for fentanyl patches and oxazepam, a shorter-acting, milder cousin of diazepam (Valium).

The oxazepam is to help her sleep better at night, so that she might feel more rested during the day. Dr. de Moel said we’ll see how that goes; she may eventually take it during the day as well, if she continues to be so agitated and restless (and if she wants it, of course).

The fentanyl patches will replace the paracetamol suppositories (and who wouldn’t be psyched about no more suppositories?), but there’s a catch: fentanyl interferes with bowel movements, so my daughter’s going to have to poop before we can start using them. (Once again, it’s been over a week since she last pooped.) We’re back on the Importal and bisacodyl (Dulcolax).

Dr. de Moel will come back Friday afternoon to see how things are going.

Today’s been good vomit-wise (none), bad eating-wise (two bites of carrot cake). Yesterday was also a near-nil eating day. Our dexa experiment is over; we’re going back to her maintenance dose of 9 mg per day.

I spent most of the afternoon with her, massaging, scratching, just being near her. She got mad at me when I went downstairs to eat a bowl of soup. All part of the process, according to the brain hospice site.

On to the Fentanyl

18 Oct 2007

The Importal and bisacodyl finally worked their magic about 11:30 this morning, so my daughter has her first fentanyl patch. It will take about 24 hours before the fentanyl is in her system in full force. The patch stays on for 72 hours. It’s so tiny: about the size of my husband’s thumb. I’d expected it to be the size of my hand, like an Emla patch. Tiny is good—less “ouch” when we have to change it.

She threw up again this morning. She seems less agitated than yesterday, but more so than the day before. She slept well last night, not waking even once. Nonetheless she’s very tired today.

Not the Best Night Ever II

19 Oct 2007

It was another restless day, less agitation than yesterday but nonetheless difficult. We gave my daughter her oxazepam at 4 PM to help her finally get some rest. It didn’t work. We gave her another at 2:30 AM. It’s 4:30 AM, and none of us has gotten any sleep yet. She’s been calling us literally every few minutes to help her change position. At 3:30 AM we finally gave up hoping the oxazepam would kick in; I went in to rub her head and neck, and my husband phoned the on-call doctor at the Centrale Huisartsenpost, who came out and said to give her another oxazepam and an oxycodone to help with her pain until the fentanyl is fully circulated in her system (which will be tomorow around noon). My husband is out getting the oxycodone now.

My teenage daughter is now on drugs, with my blessing, that I’ve only heard about on episodes of Law & Order. Life is very strange.

Mor Drugz 4 U

28 Sep 2007

Dr. de Moel came by at 1:45 this afternoon. We discussed last night’s misery and he loaded us up with more ammunition (thankfully: we’re headed into the weekend). The new scheme:

Her quality of life is rapidly decreasing and is, in my estimate, only slightly above nil. She’s restless and uncomfortable pretty much all the time. She’s no longer eating at all and is only drinking enough to take her pills. For the past two days she’s been asking me if she can have more pills—she who always makes a sour face when pill time comes around. I take this to mean she wants something, anything, to make her feel better. Yesterday she sent away Loe, the volunteer who’s come to play games with her twice a week for the past several months. She just wanted to sleep. Since May she’s looked forward to and enjoyed Loe’s visits. Another step down the road.

This afternoon, before Dr. de Moel came, I talked with her about how things are going now and asked her if she wanted to sleep through the rest of the dying process, to be unaware of the discomforts she’s having. I asked because throughout the months, she’s always said she wants as little pain as possible even if it means she sleeps more. All these months we’ve promised her she won’t be in pain, but she is. Today she just shrugged and said, “I don’t know.” I said that was fine (anything other than a resounding “yes!” is clearly a “no”), and that we’d ask her again in a few days. An hour later, just as Dr. de Moel was headed out the door, she asked me if she could go to sleep. I repeated, “you want to go to sleep?” She said, “Yes, forever.”

I ran downstairs to relay this information to Dr. de Moel. We aren’t ready to sedate her permanently, but he said we can eventually move on to temazepam during the day if we need to. And take it from there. For the moment I gave her an oxazepam and an oxycodone, which didn’t completely please her, but after a long back scratch she’s finally resting.

Well, That Sucks

19 Oct 2007

My daughter slept peacefully until 8:15 PM, when I woke her to give her her pills. And what a lot of pills there are: 2 dexamethasone, 1 pantoprazol, 2 diphantoine, 1 tablespoon lactulose, 1 ondansetron (Zofran), and 1 temazepam. She doesn’t swallow very well; half the water comes back out with every sip. And as the last pill went in, everything came back out. Splayed out in all its pharmaceutical glory (some bits a little worse for wear) across her bib, her shirt, the bed pad.

I’ll be damned if I’m giving them all to her again. I’m not in the torture business. It’s miserable when she throws up; it’s miserable when we have to redress her and change her bed pads; it’s miserable when she has raspy, mucous breathing for an hour afterward. And it just doesn’t seem necessary. I gave her the temazepam again. Period.

She’s been less responsive today than she was yesterday, but I don’t know if that’s from the oxazepam, oxycodone, and fentanyl relaxing her, being woken from sleep-after-exhaustion, or progression in dying. Probably some of all. I’m curious, in a dreadful sort of way, to see what she’s like tomorrow.

A New Gadget and a New Life

20 Oct 2007

Sonja from hospice was here again last night. My daughter has been calling out instead of using the intercom button, so my husband hit the stores yesterday afternoon. Unfortunately, our brand-spanking-new € 100 DECT baby monitor didn’t perform so well. I think it’s because baby monitors are built to pick up a baby crying or babbling, not a single, weak call of “Mom.” I’ve told my daughter to say something like “Mommommommommom” when she calls, but I don’t know if she’ll remember. Anyway, I was up twice when I heard my daughter call from the next room (but Sonja heard nada on the baby monitor downstairs), and my poor comatose husband was up once to help her to the potty chair, since he’s the only person left in the universe who can get her there. After fiddling with the sensitivity and switching the darned thing on and off, it seemed to work for the rest of the night.

At any rate, it should come in handy in six months or so, when we welcome little Latex Malfunction (working title) into the world. Yes, congratulations are in order; despite the absolutely horrid timing and the fact we had no plans whatsoever to have more children, we immediately chose to continue the pregnancy. And though we haven’t had much time for it so far, we’re happy. It helps that all three children are absolutely delighted at the news.

So far this morning my daughter’s had only a Zofran (at her request) and an oxazepam. She’s feeling nauseated, though she hasn’t thrown up yet. Her breathing is rapid and shallow. Shockingly, she didn’t want me to sing “Eight Days a Week” to her (I used to sing it to her as a baby, along with “Close to You,” a perfect lullaby if you replace girls with folks and adjust hair and eye color to the baby at hand).

Just Hours Now

21 Oct 2007

My daughter declined dramatically over the course of yesterday. By mid-afternoon it became clear she would soon no longer be able to swallow, so we called the Centrale Huisartsenpost and my husband went to pick up a prescription for liquid morphine which we could give by dropper. By late evening she could no longer drink from a straw.

Her communication declined as well; by late afternoon she no longer spoke, nodding yes or no to our questions. By late evening her nods had become very faint and she sometimes didn’t respond at all, so that we had to ask a question more than once.

At one point during the afternoon she wanted all her covers off. She stayed like that for a couple of hours.

Despite the temazepam we gave her late morning, she never did sleep. She sometimes reached for her head; we asked if she had pain there and she said yes. We gave her liquid morphine. By late evening she had no more pain.

I slept on a mattress on the floor beside her bed (she didn’t want me in the bed with her, but did want me to stay close). She nodded “yes” when we asked if she was okay, shook “no” when we asked if she had pain. Her breathing remained rapid and shallow into the night. Around dawn it changed, became much more labored and mucous, which woke me. By this time she’d lapsed into a coma, eyes closed. Since then a cream-and-coffee-colored runny mucus has been oozing copiously from her nose and mouth.

I sang “Eight Days a Week” and “Close to You” to her this morning. I told her we love her and we’ll miss her. I told her she’s free to go when she’s ready. I told her we’ll always remember her and tell each other stories about her: ice cream and jellybeans, the color pink, fuse beads and games of Sorry, her sense of humor.

Her arms and legs are cyanotic, but surprisingly still very warm. Since the wee hours she’s had a bit of Cheyne-Stokes breathing; mostly she’s breathing rapidly and shallowly, but every ten minutes or so her breathing calms, then stops briefly before becoming rapid and shallow again.

She is fully in the “Just Hours” set of symptoms at the brain hospice site.

Oma, Opa, and Charlotte came yesterday to see my daughter and pick up the youngest two for several days, per the plan from several weeks ago (next week is fall break). I’m glad her little brother and sister aren’t here for the labored, raspy breathing and the oozy mucus, but I think we’ll call them back once she’s passed.

We tried to prepare Oma and Opa for how much she’d declined, but we didn’t know Charlotte was coming. I’m so glad she got the chance to see my daughter again (she last saw her on the Spain trip). They went up to see her one by one. Each of us was moved to tears at one point or another. It’s unreal how quickly it’s suddenly going.

Gone

21 Oct 2007

My daughter passed away at 11:34 this morning. Her breathing changed, waking me, around 7:30 AM. Around 9:45 AM it became a “fish out of water” kind of reflexive gasp. This lasted until about 11:20 AM, when she suddenly started breathing much more slowly. After fewer than ten of these breaths with long pauses between, no more came.

As far as we were able to tell, she was not in any pain during the last hours, nor was she frightened. My husband and I sat with her on her bed and stroked her head, arms, back, and legs.

A doctor came from the Centrale Huisartsenpost to confirm her death. Then my husband and I washed and dressed her. She’s now lying very peacefully under her blankie, holding her Buttercup, on her pink sheets, dressed all in pink, wearing the perfume her sister gave her for her birthday.

She’ll stay in her bed at home for the next few days. We welcome flowers to place around her room (make them pink ;) ). Everyone who feels the need is welcome to come say a private goodbye to her (please call first). At the end of the week she’ll be cremated, with just my husband, myself, and her brother and sister there. Details on her memorial services will follow later. There will be two, one here in Holland which we will arrange and one in the US which her father and stepmother will arrange.

Thank you all so much for your continued support and empathy over the past year. It’s meant so much to us.