Christmas Visit Day Nine

2 Jan 2007

My husband and two youngest children left at 8 PM. My husband hopes to make it north of Richmond before stopping for the night. They’ll fly from DC to Amsterdam tomorrow.

It was hard to see them go, but I’m glad I’m staying. It’s easier this time, since I’ve been with my two youngest all week. I’ll fly home again in ten days.

My daughter had another so-so day mood-wise. She was awake at 10:30 AM when we arrived. I helped her dress, but she wouldn’t eat or drink and didn’t want to get out of bed.

She was again much weaker today. She couldn’t do even two bicep curls, pulling my hand up to her chest and resisting as I pulled it down; a few days ago, she could do ten.

Linda from PT and Lisa from OT came by just after 1 PM. They brought a spiffy contraption that helps my daughter stand: it looks like something you’d see in a fitness center. She sits on the padded seat and a lever pumps the chair up until she’s standing, braced between the seat and a backrest on one side and stomach and knee rests on the other.

She was not excited about this device. Linda and Lisa had her stand in it for fifteen minutes, and she was visibly peeved. She wanted to get back into bed. When her fifteen minutes were up, she refused to go down to the gym for further work. This, after she said she wanted to work on walking when they’d asked at session start.

I pulled rank on her. As I understand it, I said, legally speaking I’m the person who gets to make this call, and you’re going down to the gym. But I’d much rather you said so.

She went down to the gym.

They had her reach with her left hand for bean bags in all kinds of locations; her brother and sister helped hold them up for her, aided by a boost from their father. She worked on sliding small objects across a table with her right hand. Last, but most definitely not least, she walked about five feet using her armrest walker. This time she had two people helping her, not three.

I hope it’ll be like this every day. What a workout!

Lisa told me she’d heard that my daughter is much more motivated and works harder when I’m around. It’s great hearing that: I want to be her champion, the guy in her corner, the megaphone-bearing coach in the car cheering her up the next climb. I’m glad it’s working.

On the other hand, what will happen when I’m not there? I want her to want this for herself, to want mobility, to want independence, whether I’m there to bring it into focus for her or not.

The dietitian, Charlotte, came in for a talk. I had her explain that the next step was a feeding tube down my daughter’s nose. I had her explain how important calories and nutrition are, for everyone but particularly for someone getting chemo and radiation and fighting off cancer. My daughter nonetheless ate almost nothing today. She didn’t try, the way she has tried some days.

I must sound like a broken record, harping on about the feeding tube. It’s her choice, and it looks like that’s what she’s choosing. I have no qualms about getting the doctors to do it: my husband insisted they weigh her today, and she’s lost 17 pounds since October 10, down to 111 from 128. She’s barely eaten anything in two weeks, maybe longer. This cannot continue.

We saw her radiologist after her treatment. He said her arm and leg movement were more than he’s seen before. I asked about her last treatments, especially chemo; I know they’re giving it to her four hours before radiation to harness some kind of synergistic effect. Since her last radiation treatment will be Saturday, January 6 (as her radiologist reiterated today), I asked when her last chemo session should be. He said Friday, January 5, would be fine with him. I asked him to please be sure and pass that message along!

Her aunt came by just as we got back from radiation. After a while we convinced my daughter to join us all in the parent lounge to play cards (31). We were two rounds into it when her stepmom, her dad, her baby sister, and stepmom’s mother came in. We paused the game and chatted for a good while.

Bless stepmom for this. She’s visited every day since Sunday, and I can imagine how the conversations go at home while she’s trying to get her reluctant husband—an actual blood relative of the patient—to come with her. He spent his time there looking wounded, and he didn’t speak to any of us. Frankly, I don’t care, because he did speak to his daughter.

If there is a heaven, her stepmother will be going there.

After the home team left, we went up to the sixth floor for dinner (Tuesday is volunteer dinner night for patient families). My daughter most adamantly did not want to go with us, but we took her anyway. She asked for some salad and potatoes. We decided to eat in the parent lounge downstairs. I’m so glad we “made” her go: I told her I’d promised her she could go back to her room after we got the food so she didn’t have to join us, but she said she wanted to.

She ate several bites of salad, then started feeling nauseated. I got her a puke bucket and some tissues; she didn’t throw up, but after a few minutes she asked to go back to her room. We got her settled in for the night.

She took all her morning pills (albeit late in the afternoon). This morning she’d proudly told me she’d taken all last evening’s pills (we weren’t there). Good girl!

Christmas Visit Day Ten

3 Jan 2006

My daughter ate 1245 calories today (my estimate). Woo hoo!

She did this because I told her this morning that she could either eat 1200 calories or I’d ask for a feeding tube to be placed down her nose. I told her it was her choice. The entire day was pretty much about sips of milkshake and bites of food, but she didn’t complain (much).

She was asleep when I arrived; I woke her at 10 AM, gave her a sponge bath, and got her dressed. She was in a reasonably good mood.

We finished bathing and dressing with ten minutes to spare before Ellen, the hospital schoolteacher, came by. They worked on geometry for 30 minutes or so. We talked about possible courses for next semester, and about what happens when Meg leaves the hopsital. Ellen said that most kids in her situation (chemotherapy cycles for several months) get instructed by a teacher who comes to their homes. That sounds doable.

I fed my daughter bites of waffle as she applied SSA and SAS.

I scratched her back until Linda from PT and Jan from OT came at 1:20 PM. She went down to the gym again. They’re evaluating her for Rehab, so they want to see everything she can do. Today they had her move herself around in the wheelchair using her left arm and her left foot. She moved from her wheelchair to the (chair-height) therapy mat almost entirely unaided using a sliding board (which is just what it sounds like). Wonderful! And she stood in the standing frame for fifteen minutes again, which she described as “really stupid” when OT Mandy asked her what she thought. Believe it or not, I said, that’s an improvement over yesterday’s response.

I scratched her back again until David came to get her for radiation. One more down, just three to go. Her radiation technician, Deborah, asked if 9 to 10 AM Saturday morning was okay for her final radiation. You bet, I said. It’s definite—Saturday is her last day of treatment! We’re going to take down tooters and Hawaiian leis, and her radiologist will have a cupcake ready for her. She can also get her picture taken wearing a Carolina Hurricanes jersey and holding the Stanley Cup, but she’s not at all interested.

After radiation we still had 500 calories to go, plus all the morning’s pills. I’d put those off in favor of getting food into her. She took one pill and then threw up; we postponed the rest an hour more.

I did lots more back-scratching.

We worked on her new puzzle and got almost all the border completed; we’re missing just one last edge piece.

She’s still using the bedside commode; it’s been five days since she last used the bedpan. She may not have much initial motivation, but she has scads of nearly frictionless momentum.

She worked hard at eating her dinner: chili, rice, a chef salad with turkey, and a milkshake. After two hours she did it: calorie mission accomplished—and all pills taken. Way to go!

I’m counting on that frictionless momentum to make it easier for both of us tomorrow.

I am exceptionally happy to report that her dad came by for nearly two hours in the early evening. Stepmom is out of town for a conference, and I had my doubts about whether he’d come. But he did. He left the baby with grandma and really went the distance. He was upbeat and pleasant with me; we all joked around, and my daughter definitely enjoyed his visit. Kudos to him!

Christmas Visit Day Eleven (First Half)

4 Jan 2007

It’s an immensely difficult day.

She was sleeping when I arrived; I let her sleep until 10:15 AM. She made no effort to get up when I went in and woke her. She seemed disinterested. A team from Rehab came in to evaluate her, and she was not motivated. I could tell when they left that if they’d had to decide then, the answer would be “no.”

Nurse Ashley helped me get her up from the commode after pooping, and she spent at least 20 minutes getting my daughter to get herself scooted up in bed. I adore Ashley. She really pushes my daughter to work, both encouraging her and calling her bluff. You can do better than that, Ashley tells her. I’ve seen you do it. So stop doing those tiny little pulls and really pull on that bar.

Alyssa, the psychologist, talked with her for about 20 minutes. Alyssa told me her affect was very flat. My daughter talks mostly about going to the beach in a few weeks, so that’s made an impact. I’m glad it’s something she’s looking forward to.

The Rehab team came back to assess her. They concluded that she isn’t ready for acute rehab, but perhaps sub-acute rehab, which is at a slower pace, would work for her. They don’t do that here; the closest facility is at Wake Medical in Raleigh. They’ll look into it. In any case, they won’t do rehab with her at all unless they know where she’s going afterward, so they can gear the equipment and training to her specific situation.

Then I talked with her. I was very frank. I talked about her unique difficulties with impulse control and planning for the future. I talked about how she burned bridges with us, and then with her dad and stepmom; she nodded, she remembers. I told her she wasn’t going to be going home: she needs to know that.

I told her my husband and I have been considering having her come back to live with us. I said it was no small decision, because things weren’t going well at all when she moved away. I asked her if she remembered threatening to kill her brother and sister. She said yes.

I told her we know she doesn’t do it on purpose, throwing tantrums and making life miserable for the people around her. But she does do it, and that makes it very hard to live with her. I told her some things would have to change if she came back to live with us, to make it work.

I told her most people her age (15) would get that they needed to eat even though they weren’t hungry, and they’d do it. I told her that she’s the one who’s going to have to do the work, and to understand why she should be doing it. I told her no one can make her go to Rehab, no one can make her work herself to become more independent. We can all come in there every single time and push her to scoot herself up, push bites of food into her mouth, but we shouldn’t have to. She needs to find her motivation to live, to move.

It’s so hard; no one understands what we’ve been through with her. No one groks how developmentally stunted she is. She isn’t retarded; you can’t see it, you don’t get it unless you’ve lived with it. Everyone tries to make me feel better by saying “she’s been through so much” and “most kids her age don’t really think about the future.” I know they mean well, but it just makes it worse. I feel very alone.

I asked her if she would want to come back and live with us in the Netherlands. She said no, probably not. I asked her where she thought she’d go. She said “home with Dad and Jamie.” I looked at her and said, “That’s not an option.” She asked, “But why?” This is just minutes after I told her she wasn’t going home, and why.

She’s downstairs with Linda and Lisa now, doing her PT. I’m in her room, typing this.

Do I let her go to a group home, some kind of assisted care facility? I don’t see how I can. It sounds terrible. Do I really want to take on having her back? She made our every moment a living hell, and I exaggerate only very slightly. We decided to place her out of the home two and a half years ago; she hasn’t changed since then. Do we all have to suffer under her tantrums, her kicking and screaming, smearing the entire bathroom under liquid soap, ripping all my husband’s clothes out of our closet and throwing them around our room, trying to kick me down the stairs, the threats that used to make us check that our other two children were still breathing at night?

When I write it like that, it seems easy. I shouldn’t forget that’s how it really was.

Christmas Visit Day Eleven (Second Half)

4 Jan 2007

I met with Chris, the social worker, this afternoon.

The insurance company is unwilling to pay for more weekends in the hospital. Normally, Chris told me, they won’t pay because the kids don’t get treatment on the weekends. Most kids will go home. He’s managed to push it through for her so far, but now they’ve drawn the line.

I didn’t realize she could have gone home on weekends. I thought she had to stay in 24/7 because the insurance company wouldn’t pay for any nights in the hospital if she left on weekends. “If you’re well enough to go home on weekends…”

We are talking about an insurance company here, so maybe both are true :-).

Of course, it would have been hard to manage with her right side. Her bedroom and bathroom are upstairs at home, and hotels aren’t really equipped for that, either.

Anyway, it’s good timing, since she’s finished with treatment on Saturday. On the other hand, that may mean she gets discharged Saturday afternoon. Will her dad and stepmom have her come home for a few days, until Rehab in Raleigh takes her (if they take her)? I don’t think there’s any other option on such short notice.

Since she can’t go back home to live, Chris had been looking into a group home for my daughter, but those are ruled out by her right-side paralysis: she has to be able to take care of herself physically.

What that leaves is going to the county for help, he said. I asked him if that meant foster care; he said yes, essentially.

Oh, lord. I’m sure there are many fine people who are foster parents, but most teenage foster kids have significant problems: stealing, drug abuse, and more. My daughter has no sense of cause and effect, of action and consequence; and she has only a rudimentary conscience. She’s no twisted psycho who gets off on hurting small animals or whatever, but I can’t rule out that she could hurt someone in order to get what she wants. People are largely objects for her; if a cardboard box is in your way, you kick it aside. Putting her in foster care sounds to me like turning her into a problem for society, introducing her to all kinds of bad attitudes and behaviors she doesn’t need to become acquainted with.

I left at 5:30 PM. She didn’t eat a single calorie today. She slept most of the afternoon; I spent a lot of the day twiddling my thumbs in the lounge by the nursing station. I cried my way up to Franklin Street, got a new prepaid phone card, ate dinner, and got a coffee. I had about three and a half hours before Dave picked me up, and I spent them thinking.

I don’t think she should come live with us. I reread some of the journal entries I made just before she moved away:

I’m going to try to relax for a few minutes before going up to start on Meg’s room with her. I feel drained. Interacting with Meg is a virtuoso act; you have to be completely focused, remain utterly calm, and grit your teeth so you don’t interrupt her or let irritation creep into your tone, because if you do, she gets mad and whatever progress you’ve just made crumbles to dust. A minute later she is cheerful again and it’s as though nothing has happened; you’re left feeling used, abused, and a lot like Sisyphus, condemned to push a stone uphill for eternity, a stone that rolls back to the bottom of the hill every time you reach the top. Whatever progress you make with Meg can be demolished in a second if you show any impatience at all.

On an average day, in which Meg must sometimes wait or even be cut off when she wants to tell a story because you must attend to another child or a phone call, the stone never even seems to leave the mountain base. On a bad day, that stone is resting squarely on your chest.

How am I supposed to react when my child calmly issues a stream of scathing, shockingly rude accusations at me as she sits at the dining table waiting for me to finish making her breakfast? “You’re so stupid you can’t even say anything. Are you deaf? Stupid gutter slut.”

Meg came back from walking Vera home. I asked her if she’d set the table. She said “no, I’m going upstairs, and by the way, I’m not going to school tomorrow.” I said “WHAT?” She said something I couldn’t hear, so I asked her to come into the kitchen and talk with me while I was cooking. She said no, she was on her way upstairs. End of conversation. I was left wondering if I should set the right tone and get her rude-as-heck butt back downstairs to set the table, or if the right thing to do was to ignore it. I ignored it—because I know where the first option leads. But it is far from the first time I’ve wondered how I ended up here, and whether I’m doing the right thing. Or if there even is a right thing.

I go up after her, ostensibly to help her pick out her clothes for tomorrow’s class trip, and she repeats her statements. Because this is a conversation I think Marco should be part of, I tell her we need to go back downstairs and discuss it for fifteen minutes with Papa. It quickly becomes evident that she isn’t going to give us any more information about why she won’t go; to every “why,” she answers “because.” She seems to feel we are her antagonists. Her demeanor does not suggest that there is a big problem or anxiety lurking behind her refusal to go; she just doesn’t seem to think it will be fun. We talk beyond fifteen minutes, about which she gets irritated. We explain that she is in “last chance” land, that she really needs to do her best and work with us to solve the problems at school and at home, or we will have to get help elsewhere, whether she wants it or not. She says she doesn’t need any help.

We talk some about the importance of school, both in terms of the law—children in the Netherlands are required to attend school between 5 and 16—and in terms of her future. When Marco asks how she plans to get food if she can’t get a good job later, she says “I’ll eat your food.” When we say, “But what if we say you can’t eat our food? What if you have to provide for yourself?” she says, “Then I’ll steal your food.”

Once at the shopping mall, Meg heads straight for the earrings. I remind her that we are here to buy for other people, that this shopping trip is about her father and stepfather. She bothers me about the earrings the entire morning. She has enough money to buy them since we won’t be opening a bank account here for her after all and she doesn’t need to buy more minutes for her cell phone since she can’t use it in America. On and on and on. I woke up already drained, so I’m working hard to keep myself from snapping at her. I keep reminding her we are shopping for other people we care about. I ask her to try thinking about those others and not herself for this trip. She says “Look who’s talking. Like you ever do that. I don’t think so.” It’s all I can do not to just walk away from her.

On the way to the next store we pass the Cool Cats, a clothing store she really likes, and she asks if we can go in and look around. I say no and remind her we are here to buy for Marco and Pat. She issues a stream of nasty comments my way. I ignore her and keep walking. She shows very little interest in picking something out for Patrick for Father’s Day. I’d expected she would be blasé about picking for Marco, but she shows no more interest in buying something for her “real” dad. To everything I suggest Meg just says in a bored tone, “Sure. Whatever.” In the end, I pick out something for both of them.

Meg tells me not to be so nasty when I finally utter something in a snappish tone. I tell her she has been nasty to me all morning and I’m tired of it. I say I’d planned to go to the Hema cafeteria after we finished shopping and get some pie and coffee together but she has been so rude to me I don’t feel very much like doing that anymore. She says who cares, she doesn’t want to do that anyway, doesn’t matter to her, and I’m the one being nasty. On and on and on. Her tone is conversational, like we’re talking about the weather. One breath after insulting me she asks which of the bracelets she’s wearing I like the most.

These are snippets, tiny fragments out of three consecutive days in June of 2004. She was 12.

I’m going in later tomorrow, around 1:30 PM. I plan to spend tomorrow night in her room so I can be there to celebrate her Saturday-morning final radiation.