Beyond Angeles

Halloween in hospital

The wonderful women in child life services arranged a Halloween parade through the hospital. October 31st, at 1:30 in the afternoon, they lined all the kids, most in wheelchairs and with IV poles, in the lobby of JC West.

Jefren had worn a bright-red hood that hid his face, so nobody could see who he was. Other kids had other types of costumes. One was a ballerina, there was a clown, several monsters and a C3PO.

That same day, Jefren had appointment with Dr. Gladstone, supposedly at 1:15. Usually when Jefren had appointments while he was going through chemo, instead of making him wait in the orthopedic waiting room downstairs, the nurse would just call up when they were ready to see Jefren. We didn’t want to miss the appointment, so Maggie (one of the wonderful child-life services women) took a beeper along. If they called while we were out and about in the hospital, she’d get a beep and we could bring Jefren down to ortho.

A little past 1:30, the parade took off. Janet and I took turns pushing Jefren in his wheelchair. We went around on 3JC West, up to adult oncology sixth floor, down to the administration offices on the1st floor, back up to more administration offices on the 8th floor, then to another wing on the fifth floor where everyone came out into the main corridor (instead of the kids going onto the wing) because someone had a possible infectious disease.

Everywhere we went, people smiled, were encouraging, and most importantly, gave out candy.

It was well past 3:30 before we got back, but Dr. Gladstone’s office still hadn’t called. And Jefren had a great time collecting candy.

Dr. Gladstone’s office finally called around 4:20. When we went down, it was a quick visit. He felt everything was going fine. He said the tumor had gotten a little smaller, which delighted us. We were still hoping it would dissolve entirely away and that he’d never need surgery, like his first roommate, but we didn’t mention it.

After the visit, we took Jefren back upstairs to his room. He wanted to start working on his candy, and since he wasn’t eating anything else, we just let him. He ate a whole bunch that night and the next day. Then he complained he didn’t feel well, and didn’t eat any more. We kept the rest of the candy for a long time.

Meanwhile, I went home and picked up Eli, who had gone trick-or-treating with Randy and another friend.

It turned out Jefren did as well as Eli, candy-wise. It wasn’t enough, though. Jefren was still losing weight right and left.

Dragon pendant

Amy had told him he should wear a silver chain around his neck. He found a pendant he loved to put on it: a dragon and snake winding around a sword, like that old medical symbol. I didn’t know if that was good for him— what effect would the dragon or the serpent have? I didn’t know.

But Amy was all for it. “The dragon is his power creature; the serpent around the sword is symbol for healing, so it’s doubly empowering to him.”

Jefren bought a silver chain at Wal-Mart, slipped the pendant on, and put it around his neck. He didn’t always wear it in the hospital, though, because he was afraid the chain would get caught on his central line. But when he wasn’t wearing it, he often held it and fiddled with it absently, watching TV or playing.

Weight loss—dealing with it

From the first chemotherapy treatment, Jefren stopped eating. We don’t know what his normal weight was— after the biopsy, his weight was down from not eating before the surgery, and vomiting all day after. Maybe it went back up after that, but the morning of his central line surgery he weighed 83 lbs.

He didn’t eat much that day, either— just the Spaghetti-Os at 1:30. His chemotherapy began— and his eating stopped— the next evening. After three days of chemo, Jefren was down 10 lbs. After that, his weight dropped even more.

Which caused problems. For his height, Jefren was thin. Every time the chemo started, Jefren stopped eating. He was so nauseous most food didn’t appeal to him. When he did eat, he just threw up when he was done. After several days of this, his body got in the rhythm of not eating. Then Jefren wouldn’t eat even when he could. For several days after each chemo ended, Jefren didn’t bother to eat. For days, he ignored any food we brought.

For Jefren, it might have been like fasting; after a certain point, you just don’t feel hungry anymore. When you start eating again, you have to tell your body to want food. Jefren didn’t know that, so he didn’t do it.

Jefren could go home as soon as he could keep down 8 oz. of liquid, once the chemotherapy ended. It took days to accomplish that. When we did get home, Jefren continued to feel nauseous for days— even with the anti-nausea medicine he was supposed to take. It was a pill Jefren couldn’t swallow: we had to crush it and mix it with apple butter on bread. Even then, he had trouble getting and keeping it down.

Amy pointed out he needed to remind his body to want to eat. He would, but just when he’d start eating again, he’d have to go back in for another round of chemo.

With all that, Jefren lost more than 15% of his body weight. That made the nutritionist very nervous.

Weight remedies

After several treatments, the nutritionist came to see us. She told us she was concerned about Jefren’s weight. She said they didn’t know the long-range effects of chemo on Jefren’s growth, but they wanted to make sure he grew as much as he was able. She pointed out that Jefren’s body needed nourishment to fight the tumor and the effects of chemo. At his current body weight, she told us, Jefren would feel listless, droopy and tired all day— even without the chemo.

She offered some solutions: First, just get him to eat. Unfortunately, that was a hard one. The nutritionist worked exclusively on 3 JC West, so she knew kids going through chemo do not want to eat.

Our next option was to insert a tube through his nose into his stomach, so they could drip in liquid food all the time. This would provide nutrition and keep his stomach working. “Absorbing food through the stomach is best,” she said. “It will also help him eat better after chemo ends.”

We couldn’t see Jefren going for that.

Our last option was to feed him through his central line. “But that cost $250 dollars a day,” she told us, “and most insurance companies won’t cover it.”

We asked how much the tube down his nose cost. “Nothing,” she said. “It’s considered part of room and board.”

Making decisions

It was unlikely Jefren would suddenly start eating more, and we knew he’d kick and scream about the nose tube. So we stalled for time.

We asked about nutritional supplements Janet and I both found that to help us. We used a brand the nutritionist wasn’t familiar with. We brought in bottles and cans to show her. She read the label and said they were fine.

We tried to get Jefren to take some. He tried to (he really did), but it didn’t work. He couldn’t swallow pills. There was some constriction in his throat, Amy told us. He tried chewing the pills, but couldn’t stand the taste. Even melting chocolate over them didn’t help— the taste still came through.

Nutritional drinks didn’t work, either: he couldn’t stand the texture. It wasn’t just Jefren— chemotherapy changes people’s sense of taste. He couldn’t eat most of his former favorite foods, like cashew butter and apple butter sandwiches, or turkey bacon.

He did find some foods he liked. Every Thursday evening in “activities” Maggie helped the kids make pizza. It was a simple recipe: Phillsbury muffins, pressed out flat, covered with pizza sauce from a squeeze bottle, sprinkled with shredded cheese from a package. Zap it in the microwave for a few minutes, and viola! Pizza extraordinare.

Jefren loved it. He always went to Thursday activities, and asked Janet to get the ingredients so he could have it whenever he wanted. She kept it all in a bag she brought to the hospital, and cooked them up in the kitchen.

He ate tons of them— in the hospital and at home. We thought he was going to get sick of them. But at least it was something he could eat.

Unfortunately, it wasn’t enough. The nutritionist met with us again.

Some improvement (magnets)

Sometime in November, Jefren was going through chemo, throwing up every hour or more. Sitting in the hospital next to him, I kept thinking, “how can we stop his vomiting?” I stood up to get something, and the answer flashed in my head: put magnets on Jefren, one on each side of his stomach, in the middle of his lowest ribs.

Our chiropractor Steve had given us some special magnets months ago to reduce aches and pains. Taping them over an afflicted area like a sore muscle or joint helps get rid of the pain.

I had the magnets with us. Using bandage tape, we put them on Jefren, one on each side, halfway between his solar plexus and side.

Jefren was open to using the magnets, but had trouble with the tape— his central line was taped to his chest in several places, and his skin was raw from removing it at dressing changes. So I taped them on his shirt instead.

They were strong magnets, and when Jefren rolled on his side, they snapped together. Several times I had to reach over and pull them apart, setting them back where they were supposed to go. Surprisingly, most of the time they stayed pretty much in place.

The effect was immediate. Jefren went from throwing up every hour or less to throwing up only three times in three days. At first, I was going to leave the magnets on only for eighteen hours. But the feeling kept coming to leave them on, so we did. They stayed on for three days.

When I mentioned it to Amy after we came home, she said using the magnets was okay but don’t leave them on too long. She didn’t say why. But it didn’t matter. Whatever they had done was permanent. Without ever using the magnets on Jefren again, he still only threw up once in a while after that— for the rest of his whole cancer treatment.

Which was great, but still didn’t help his weight problems.

More dealing with weight loss

So we met with the nutritionist again. She offered the same opinions and the same options. She told us about a special children’s menu Jefren could order from, with lots of items kids enjoy eating, like cereal at every meal. Jefren started ordering cottage cheese, Jell-o (any color but red), Fruit Loops and every other kind of cereal three or more times a day. (One day every meal came with three boxes of cereal.) Occasionally, he ate the food when it came. But not very often.

Most of the cereal was tossed into our hospital food bag, along with McDonald’s sweet and sour sauce, ketchup, and various other flavorings we brought to the hospital every time Jefren went.

We stalled the nutritionist again, just for a day this time. We couldn’t really see Jefren accepting the tube gracefully. I’d have trouble with it, too— I was managing with the central line, but that was out of sight all the time. A tube in his nose would be hard to miss.

The central line nutrition looked the best, but we still hadn’t worked out our finances, so we didn’t know if we could do it.

The nutritionist didn’t get back to us the next day, as we expected. At some point, Janet and I concluded that since we didn’t know how we were going to pay for any of this, and if we ended paying for it for years, what difference would another couple hundred dollars make?

It came up again soon after that. Janet was with Jefren — I was home with Eli — when the nutritionist came by. This time she said something had to be done now. So Janet had them start the central line nutrition. It was during one of Jefren’s emergency visits, and it did make a difference: when I saw him the next day he was more lively and energetic.

But it wasn’t enough.

Still not enough weight

Over the next several visits, Jefren had many days of the central line nutrition. It always helped. But he still wasn’t eating, at home or at the hospital. His weight stopped going down, but it didn’t go up, either.

The thing was, every time he was just starting to eat at home, he had to come in for another treatment. Then he couldn’t eat for another week. It was a never-ending cycle. We all wanted him to gain weight. We just didn’t know how.

Meanwhile,

In November, Jefren was again admitted for emergency treatment. Again, it was a week after the first week of his five-week cycle. This time, after several days in the hospital, Jefren’s blood counts were so low he needed a blood transfusion.

That freaked us out. We thought that meant something unusual and horrible was going on with Jefren. Then Tom, Jefren’s first nurse, came in to give the transfusion to Jefren.

“You’ve done this before,” he said, “so you know what’s going on, right?”

“No,” Jefren said. “I’ve never had this before.”

“Really?” Tom was surprised. “Usually our patients have had three or four by this time in their treatment.”

So we relaxed: Jefren wasn’t doing bad at all— he was doing great!

Jefren recovered, then went through his second week of chemo. It took longer than usual to start eating again— the day Jefren was ready to go home was the day he was supposed to go back for the next treatment. In the morning, we talked to the doctors to see if Jefren could go home for a couple days. They said no, it would be better to start the next round of chemo that evening, as scheduled.

That was early morning, 8:00 a.m. or so. Then, around 11:00, the nurses started talking about Jefren going home. All the nurses seemed to know about it, but we didn’t. They just did all his usual check-out things, like ordering his anti-nausea prescription, taking readings, and disconnecting his central line from the pole which held his treatments.

We didn’t know what was going on. We thought the doctors had just changed their minds and decided to let him go home for a few days. Around three o’clock, we finally pinned down one of the nurses.

“Nobody told you?” she seemed surprised, but looked it up on her computer monitor.

“His liver is enflamed,” she told us. “When that happens, it means the body is not ready for more chemotherapy.”

“So does this put back Jefren’s treatment?” we asked.

“No, the protocol is to drop this treatment when this happens.

So Jefren got to go home for a week, and he got to skip a week of chemo.

We thought that was great. Having an enflamed liver didn’t sound all that good, but it didn’t bother Jefren physically or any other way. And it kept him from having to take three days of chemo. We thought that worked out well.

As time went on, this happened every cycle. We were concerned Jefren wasn’t getting all the chemotherapy he needed, but Amy put it in perspective.

“These delays help Jefren’s body assimilate the changes taking place,” she said. “Don’t be concerned about them.”

Around that time, Janet needed a real break— from everything: hospital, central line, worrying about Jefren, taking care of Eli. I was feeling it already, but Amy brought home the point: she needed time away from everything.

We couldn’t give her a true vacation, but we managed to schedule other people to help around the house, sent Eli to a friend’s after school (I was in the hospital with Jefren), and arrange for a day off, complete with a massage. It was only a day and it ended when Eli arrived home for dinner, but it was enough to get Janet back on track.

Dealing with weight, again

In the beginning of December, Jefren was back in the hospital a week or so after his week-one chemo. His weight was still down, and the doctors were concerned. Five staff doctors rotated in the oncology department. Dr. Jacobson was his current one. He wanted to put a tube down Jefren’s nose.

“There can be long-range problems with the central line nutrition,” he told me, “if he used it exclusively for several months. Even so, it doesn’t help his stomach— the food is pre-digested and goes directly into his veins. His stomach needs to work too, or that could cause problems later.”

He reminded me that Jefren would feel better with more body weight, be able to handle the chemo and fight his disease better.

“If I were his primary doctor,” he told me, “he’d have had the tube in long ago.” Which is probably why he wasn’t his primary doctor.

Dr. Jacobson spent a long time talking with me. His concern was genuine, and so was his compassion. He didn’t want to see Jefren suffer more than he had too. Finally, against my better judgment, I gave in.

“I’ll talk to Jefren about it,” I agreed.

When I mentioned it to Jefren later, I expected a big fuss, kicking and screaming. Instead, he mumbled, “I don’t wanna.”

I thought, “That’s not much resistance. I could probably talk him into it.”

So I decided we should do it: after all, the doctors knew what they were doing. Right?

I told Jefren it was something he should do, that it would help him. He fussed a little. Firmly, I told him they would probably do it tomorrow. I told Dr. Jacobson to go ahead, then went back to the Ronald McDonald House.

Regrets

I really didn’t feel good about the tube.

The reason he needed the tube was because his treatments were so close together. Why did they have to be? What would happen if he waited an extra two days between treatments? I couldn’t believe it would make that big a difference in the effectiveness of his treatment, and I knew it would make a huge difference in his and his body’s ability to handle the treatments.

Being mad

I’ve never been good at going against my intuition, no matter how “reasonable” things are explained to me.

So, while I was getting ready in the morning, I was also getting upset that the doctors had talked me into something.

I thought it was too late: Dr. Jacobson had said they were going to do it early in the morning.

But when I got to the Jefren’s room, expecting to see him with a tube in his nose, he was just sitting in bed, playing Nintendo. They hadn’t put the tube in yet. Jefren hadn’t seen Dr. Jacobson yet. He and I chatted for a while, then Jefren went to the classroom to do some schoolwork.

While he was gone, Cassie from the chaplain’s office came in. She was a sweet, supportive lady who stopped in twice before to offer her services and help. At our request, she had brought us some Jewish prayers specifically for the sick.

I told her what was going on— they wanted to shove a tube down Jefren’s nose to get him to eat.

“All he really needs is some time off,” I told her.

She was very supportive.

“Doctors don’t know everything,” she explained. “They have their procedures, but not all of them are for everybody.”

She told me we should ask them why are they doing any procedure, ask what happens when they do it and what happens if they don’t do it.

“Make sure they give you excellent reasons, or don’t do it.” She said we knew our child better than the doctors. “The doctors try to go by the book—they don’t always know what’s best in each case. It’s your child,” she said. “You know what’s right. Follow your intuition.”

So I did.

Change of plans

I saw Dr. Jacobson half an hour later.

“Yesterday,” he said, “you thought Jefren should get the tube. Now that you’ve had some time to think, what’s your answer today?”

I was grateful he gave me time to re-think my decision.

“I think we should just go home,” I said. Jefren had been in the hospital for over a week recovering from the side-effects of chemo. His two weeks recovery time were up—he was scheduled to begin treatment again that evening.

Which meant he wouldn’t have a break. That was one of the reasons the doctor was so keen on having the tube put in; he didn’t think going for another week without eating would be good for Jefren.

I explained why I thought we should go home. I asked the doctor about staying (what were the benefits?) and what would happen if we went.

There was no research on a patient simply leaving, and even the research on staying was iffy. Remember, they were applying a shotgun approach over time, hoping to get all his cancer cells. There were no guarantees Jefren’s cancer would be cured more, faster, or better if he stayed, or that he’d be worse if he went home. The truth was, they just didn’t know.

But I did know. I had done the God-Self on this one many times. The answer always came out the same: Jefren needs a break.

I told Dr. Jacobson that if Jefren had just a few extra days at home, he’d be fine.

“How much extra time do you want?” he asked.

“A week,” I said. I was hoping for two or three days.

I really thought we only needed a day or two, but figured the longer, the better. And if we didn’t ask for it, they weren’t going to offer it.

Dr. Jacobson said he’d see what could be worked out.

The results

Several hours later, Rebecca, the nurse from oncology, came in.

“I understand you want a week off,” she said, sitting down next to Jefren. She spoke only to him, in a very businesslike manner.

“You can’t have a whole week,” she said, “because next Friday [a week later] we already have seven kids scheduled to come in. We also have to allow for emergencies,” she said.

“That would be too much for the nurses to handle. But we can let you come in on Thursday.”

Then she went on to explain, very seriously, about the protocol, the treatment schedule, and why it was important for Jefren to follow the schedule as closely as possible. Then she asked if Jefren understood that.

“Sure,” he mumbled.

“Okay, as long as you understand, I guess you can go home now.” Then she left.

We started packing. While we were, the nutritionist came by.

“I hear you’re taking a week off,” she said. “How much weight will he gain by the time he gets back?”

“How much do you want?” I asked.

“A pound or two would be reasonable,” she answered.

I had been thinking of three or four.

“Okay,” we told her.

Then she left, and we went home.

The eating contest

On the way home, we stopped at Wal-Mart. We were getting a prescription filled for Jefren, and while we were waiting, we looked around.

At the hospital, Jefren and I had decided to have a calorie-eating contest. Since he needed to gain weight and I could always use a few pounds, we figured we’d both keep track of our calories while Jefren was home, eating as much as we could each day. All day long, we’d compare calories to see who ate more.

We each set a goal: at least 2,000 calories each day. (For the last two hours of the day, we often had to scramble to get the a few hundred calories in. A glass of grape juice (170) and a handful of nuts (210) helped in a pinch. Egg nog was my favorite: it was about 300 calories a quarter cup.)

So while we were at Wal-Mart, Jefren found some red licorice that was 120 calories if you ate three. He bought them, ate six, and we were off and running.

Over the next several days, we kept track of everything we ate. We each had a pad next to where we sat at the kitchen table, and from morning to night, we wrote down whatever went into our mouths. We even kept a cookbook listing calories on the table with us.

The result?

When we went back to the hospital for treatment the next Thursday, Jefren had gained four and a half pounds.

The nutritionist congratulated us, and they never mentioned his weight again.

A short break

Just before that hospital stay, my mother came. She stayed with us at home for a few days, and when Jefren went back to the hospital, she went with him. Janet and I enjoyed the day or two off, then went back to being with Jefren when my mother left.

© David Adelson. All rights reserved.