Memorial Cards and Service in America

My daughter's stepmother sent me the text for the US memorial cards (I'll put up a photo when I receive one). These cards went to those close to my daughter's US family.

A Memorial Celebration to honor Meghan's life will be held at the Eno River Unitarian Church located at 4907 Garrett Road, Durham, on November 7, 2007 at 4pm. Per Meghan's wishes, the attire is VERY casual and if possible please wear something pink.

Children are welcome to attend.

After the Service, friends and family are welcome to gather at our home at 112 Springdale Way, Chapel Hill. Attached are directions to both the church and our home.

In Lieu of flowers, donations can be made to:

Meghan's MemorialGarden Fund

c/o The Lanier Family

112 Springdale Way

Chapel Hill, NC 27517

ETA the scanned card (thanks, Peter!):

Memorial Cards and Service in Holland

This is the memorial card my husband and I sent to those close to us. Click for a larger version.

Suffused with Love

Tonight we move our daughter to her casket in preparation for tomorrow's cremation. The casket was handmade with great care by a craftsman in Utrecht, who wrote in response to our e-mail:

I want to wish you strength in dealing with the loss of Meghan. I can assure you that the casket was indeed made with a great deal of love and care. And I am honored that you've chosen this casket for something so important.

Yesterday and today we painted the casket to really make it hers.

Tribute

Our friend Christine wrote this beautiful ode to my daughter.

Gone

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.

Just Hours Now

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.

A New Gadget and a New Life

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).

Well, That Sucks

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.

Mor Drugz 4 U

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:

• We've switched from Importal powder (which has to be dissolved in half a glass of water) to lactulose syrup (a tablespoon is sufficient). This is to keep her bowels moving, which is vital now she's on opioids. The rule of thumb is that she needs to poop at least once a week.
• We've got 25 µg/h fentanyl patches (up from 12.5 µg/h). We can put on the stronger patch whenever we deem the weaker one isn't suppressing her pain well enough.
  
• We've got another 20 pills of shorter-acting oxycodone to bridge breakthrough pain moments.
  
• We'll be giving her the oxazepam during the day to help her relax. At night she'll get temazepam, another benzodiazepine, which should truly put her to sleep.
• She no longer has to take her Thyrax. It's a tiny pill, but one pill fewer nonetheless. For now we'll keep her on the anticonvulsant, dexamethasone, and pantoprazol (which she needs as long as she's taking dexa).
  

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.

Not the Best Night Ever II

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.

Comfort

I found two quotes on the brain hospice site today that spoke to me.

Do no great things,
Only small things with great love.

---Mother Teresa

You have to accept whatever comes
and the only important thing is that you
meet it with the best you have to give.

---Eleanor Roosevelt

On to the Fentanyl

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.

Next Steps

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 be back on 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.

Gathering Speed

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.

Symptoms: October 15, 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.

Mappa Mondo

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.

An Anniversary of Sorts

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.

Poop!

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.

Argh

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.

Speedy Resolution

After yesterday's call to the hospital billing department, I sent an e-mail detailing the situation and requesting a new invoice within a week stating a treatment start date of April 10 (the day my daughter went for her first appointment) rather than February 28. Ms. Teunissen called me in the afternoon to express her concern that a week might not be possible, but they would review the situation as quickly as they could. She called again first thing this morning to say a new invoice with a start date of April 10 would be sent to the insurance company.

To Ms. Teunissen and her team: thank you for resolving this so quickly.

* * * * *

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.

It's the Same Everywhere

So I called the hospital billing department this morning and got one Ms. Teunissen on the line. I explained that we needed the bill broken down into charges before April 5 and charges after April 5, and why. Her response:

"But we can't do that. This is the way it gets billed."

Now she could see on the screen exactly when we'd been and for what, so that's a load of bull patooey. But she's a good little cog in the wheel, and it didn't bother her at all that this administrative silliness is going to cost us € 14,904.78 that our insurance company should be paying. She didn't even feel any shame when I said our child would be dying soon and I really thought that was enough without an unnecessary hospital bill. She did condescend to communicate it to her coordinator. When I asked how long it would be before we heard back, she said:

"Could be a day, could be a week."

Socialized medicine has its benefits, but billing department drones remain the same everywhere. I don't know how they live with themselves.