Beyond Angeles

Jefren’s treatment cancelled

Jefren finished that treatment, then went right home. By now, he could eat and drink as soon as his treatment ended.

After four days at home, he was due back for the next treatment, week five in his five-week cycle. The last two times, that treatment had been cancelled because his liver was enflamed. It happened again. Janet drove him up to be admitted, they ran him through his tests, then said “go home.” Jefren did, and had a great time.

A week later, Jefren was scheduled for week one again. Usually it began with the devastating chemo. This time, they skipped that and went to another treatment. He’d been getting it before, after the killer one.

Instead of feeling nauseous, Jefren was ravenous. He ate almost non-stop through three days of treatment: French toast from Burger King, fries, milk shakes, pancakes, eggs, muffins, hospital food, food we brought from home, food from different restaurants. If we brought it in, he ate it.

After packing it in for three days, Jefren went home the day chemo ended to “recover” for two weeks. He ate his way through that, too. In January, Jefren weighed seventy pounds. By August— two months after chemotherapy ended—his weight was up to ninety-eight.

Last lessons

Jefren was scheduled to go in again for what we hoped was the last time the fourth Friday in May. Three days before, Robert from Gwen Davidsson’s office called.

“We got the bloodwork from Jefferson County Hospital,” he said. “Jefren’s potassium level is low.”

He asked if we had a potassium prescription left from before. We did. Jefren hated the stuff and just about refused to take it. It was almost full.

“He has to take one tablespoon of it three times a day.”

I explained how Jefren felt. “He hates that stuff,” I said, “What are our options—how little can he get away with taking?”

Robert must have been new. He didn’t understand healing was give-and-take.

“Well,” he said, “the people who set up these programs— and they are structured by people from around the world— recommend doing it this way.”

It was interesting. Even this far along, we were still running into people who insisted on “by the book.” I guess he was just someone else who was supposed to learn patients are individuals who have individual needs. Everyone responds differently.

I said okay. (Why argue?) Jefren would be fine whatever we did. When I told Jefren he had to take the potassium again, he absolutely refused.

Betty, from the county nurse’s office, heard him complain about it and offered to bring us a list of potassium-rich foods he could eat. We encouraged Jefren to eat food on her list.

He did— a little. But that was all.

At the hospital check-in Friday morning, I asked Gwen about his potassium levels.

“They’re fine,” she said. “Why do you ask?”

I told her about the Tuesday call, and that Jefren had practically ignored it.

“Well, he’s fine now,” she said.

Jefren was delighted.

Then Gwen looked at Jefren and said, “How have you been doing with your mouth cares?”

The grin on Jefren’s face told the whole story.

“You haven’t been taking them at all, have you?” she asked.

“Nope,” Jefren grinned. “Not for two weeks.”

“And you’re proud of that, aren’t you” she said, grinning as she shook her head. Jefren nodded and smiled.

Jefren’s last chemotherapy

Jefren was feeling great all day. He was sure this would be his last chemotherapy. He even arranged for his “end of chemo” party for that afternoon— before the chemo started, so he would be feeling good.

He was. At the party, half a dozen kids going through treatment gathered around the table. Several parents and nurses joined them. At Jefren’s request, they made pizzas that day. Maggie (of child-life) brought in a homemade double-chocolate cake with candles. Tom, one of the nurses, came in on his day off just to juggle eggs for them. He was pretty good, hysterically funny, and when he was through, there were a dozen broken eggs all over the floor.

Everybody kept asking Jefren if this was his last chemo. We had to tell them he was scheduled for one more, but they’d been cancelled every time since last fall, so we figured we’d better be prepared.

Later that day, Dr. Jacobson came by. He was visiting Jefren’s roommate, a new patient of his who was doing very well. While he was there, Dr. Jacobson did card tricks for both of the boys, keeping everything light and lively.

Chemo starts

Later that night, Jefren’s chemo actually started. He felt dragged out the next day, as he usually did during chemo. He took it easy, watched TV, played Super Nintendo, and ate a little.

Three days later, he came home.

Eli (again)

On the last day of Jefren’s chemotherapy, I picked up Eli after school. Janet and Jefren were in Iowa City. Jefren would be home later that day, we hoped for good.

As Eli climbed into the car, he told me he almost cried in school that day. He didn’t seem to be hurt anywhere, and the way he said it felt like it was his feelings. I asked him why.

“Because of Jefren.”

I realized that although Janet, Jefren, and I knew what was going on, Eli probably didn’t understand.

“Jefren will be fine,” I said. “He’s coming home today from what we hope is his last chemo. His cancer is gone, so there’s no need to worry.”

I told him all Jefren had left was the surgery to remove the central line and physical therapy so he can walk again. After that, he would be fine.

Eli felt better after that. And Jefren came home a few hours later.

Treatment gets cancelled

That week, Janet and I worried. Jefren was doing so well, we were afraid his liver might not be enflamed. The enflamed liver didn’t bother Jefren that we knew of, but it made sure Jefren got enough rest between treatments.

“If his liver isn’t enflamed,” Janet said, “And he has to take another treatment, he’s going to be really disappointed.”

There wasn’t anything we could do. We could pray that he didn’t have to take the last chemotherapy treatment, and we did. But we weren’t comfortable praying his liver gets enflamed.

“If he has to take the chemo,” I said, “at least he’ll know it’s the last. Then it will be over.”

Friday morning, Janet took Jefren to the hospital. He was scheduled for treatment, so they had to go through the regular check-in procedure.

They were home by 1:00.

Just as we’d hoped, the treatment had been cancelled: Jefren’s liver was enflamed.

Last surgery—central line comes out.

There was only one thing left: have Jefren’s central line removed. We scheduled it for the end of June.

When the time came, all four of us went up to the Ronald McDonald House. It would be our last stay there. The surgery was scheduled for 11:00 the next morning, so we had time to check out of the Ronald McDonald House before we went. That way, when the surgery was over, we could go straight home.

At 10:15, we went to ambulatory surgery. After we told them Jefren was there, we asked to speak with the anesthesiologist. A few minutes later, he came out. We went over the whole anesthesia thing about Jefren. He didn’t see any problem, and said he’d take care of it.

Minutes later, the doctor came out. He surprised us by telling us the surgery would take place just down the hall, and we could stay in the waiting room we were in.

“It won’t take long,” he said.

Jefren was an old hat at this. He was calm and relaxed, taking things in stride. The doctor asked Jefren if he wanted to keep his central line after it was out.

“Sure,” Jefren said.

“Okay, I’ll clean it up for you,” he said.

A few minutes later, they took Jefren away. Twenty minutes later, the doctor came out.

“The surgery went fine, Jefren will be out in a few minutes,” he told us.

We couldn’t believe it. The surgery had taken only nine minutes. When they were done, they put a Band-aid over the cut.

The doctor handed Janet a small covered container.

“Here’s his central line,” he told her.

I didn’t want to look. Of course, once we got home, Jefren showed it to everyone.

A little while later, they wheeled Jefren out. He was still out of it, but the recovery room was just another part of the waiting room. We moved over about fifty feet so we could be with him.

As usual, he had to eat or drink and keep it down before they would let him go home. Jefren took his time, and we were in no hurry.

Eli found some toys and someone to play with. He was bored, but eventually a nurse took pity on him and set him up with a TV on the cartoon network.

I went out to get bagel sandwiches for lunch. I brought one for Jefren, too, but he didn’t feel like eating. He kept drifting off to sleep, and we just waited. After about two hours, he sat up. The nurses started asking him questions, which he answered. After a little while, he took a few sips of soda, ate a few bites, and we went home.

Jefren throws away all his medicines

A few days later, Jefren threw away all his medicines. He pulled out the bin holding all the central line supplies and made himself an “emergency medical kit” mostly of Band-Aids and gauze. The rest went into a bag we donated to the county nurse.

Later that day, I asked Jefren “What did you do all the time you were in the hospital having treatments?” I thought he would say he watched TV. Instead, he said, “I’d say, ‘I think I’ll get the Super Nintendo and play a game.’ And if I already had the Super, I’d think ‘I’m having fun playing it.’”

Summary

When we were told by several people that the way we had handled Jefren’s chemotherapy was “awe-inspiring” and “amazing,” I had no idea what they were talking about.

We just did what we had to, in the best way we knew how.

But when I look back, there are a few points we did which might be different from others. To make everything clear, those are listed here:

“One thing that we did differently is we left ourselves open to help from anywhere,” Janet outlined. “Usually we keep to ourselves, but at the beginning of this “challenge” I went out and consciously told people. I figured we needed all the support we could get.”

We were open to everything.

We kept a positive attitude. We didn’t try, we just did. We assumed that Jefren would get better—that it was only a matter of time, only a little inconvenience along the way.

We told everybody in a positive way. “Listen, everything’s going to be fine, but we thought you should know Jefren has cancer.” We asked everyone to pray for Jefren and to picture him healthy and walking normally.

We asked God for Guidance at every step. When we were not sure of the response we were getting, we asked for clarification from our “support group,” friends and acquaintances who’s insights we trusted.

God was very strong in our lives. We prayed often, thanking God even as we asked for what we wanted, with confidence God would provide it. We never begged or pleaded. We felt we had a personal relationship with God, and we trusted in Her.

We made Jefren’s recovery our highest priority. I was starting a newsletter, but it hadn’t brought in any money yet. Rather than try to continue doing that and trying to focus on Jefren, I dropped the newsletter. We felt this was what we should be doing, trusting in God to provide financially. As you saw, everything worked out fine.

We never gave up control of Jefren’s treatment: we never let the doctors do anything because it was standard procedure.

We questioned every treatment/procedure, and then checked to see if it would apply to Jefren using the God-Self exercise. If the answer was “no” as it often was, we didn’t do it, regardless of what the doctors thought.

We opened up to everyone and everything which might help, without prejudice, and accepted it all, no matter how “strange” or “weird.”

We continued meditating twice every day.

We let Jefren do what he felt to do in order help heal himself. We let him make his own decisions about many procedures and medications, because we felt he was most in tune with his body and what it needed. We listened to him.

We kept the family together—either my wife or I was with each of our children almost every day. The only exceptions were on two of Jefren’s surgeries, when his brother stayed with a friend.

We Trusted in Divine Wisdom.

I appreciate very much that chemotherapy was there for Jefren. It saved his life. Now, though, it’s time to expand our knowledge and provide better, more useful and less stressful medicines for the future. This is our challenge. Along the way, complimentary medicine can help: all the “non-medical” tools and techniques we used are an example.

After it was over, Amy said, “By doing what you did, Jefren still has his leg. If you had just let the doctors run the show, he probably would have lost it. That would be a shame, because there would have been no need for him to loose it.”

The upshot

I would never wish this experience on anyone. Yet I’m not sure I wish it had never happened. We’ve gotten quite a lot out of it: spiritually, it has been incredible—it’s brought us more actively connected to God—both giving gratitude and receiving answers to prayers. It’s brought us support from the community from sources we’d never have expected. It’s brought us love from all directions, family, friends, this community, and further—letters have come from all over the country, people everywhere have been praying for us. Many, many people have helped us by cooking meals, cleaning our house, chauffeuring us, taking care of Eli and the pets, and easing the financial pressures by giving generously to meet our needs. Jefren has enjoyed the love and support— during a most uncomfortable time— from the doctors and nurses, who encouraged and supported him through some very miserable times.

I’d never wish directly for something like this to happen. But if something like this were going to happen, I’d want it to happen like it did.

“Make a Wish”

At the tail end of Jefren’s chemotherapy, one of his nurses mentioned Make-A-Wish. He thought Jefren would be eligible, and offered to look into it for him.

Jefren was eligible, and what he wanted was a computer. Not just any computer, either. For his last several treatments, he poured over catalogs and magazines, looking at articles and studying features, until he knew exactly what he wanted.

It was one of the best machines on the planet at the time. He also asked for every accessory he could think of: a color scanner, printer, video camera, external hard-drives for backups, graphics software, and more. We had to type out the list.

Then, the Make-A-Wish Foundation gave it to him.

It arrived in August. We had just returned from camping all the way to Florida and back. The trip put us back in touch with outdoors—Nature— after so many months inside the hospital. Jefren went swimming in the ocean for the first time, and came back healthy, strong, and feeling good.

Then, Grace from Make-A-Wish called. They wanted to deliver his computer the next day. When he was unpacking everything, Jefren said it was just like Hanukah. And when it was all unpacked, he beamed.

“This is the happiest day in my life,” he said.

We knew there were steps to take, we took the steps, one at a time, and then it was done. Then we didn’t look back.

© David Adelson. All rights reserved.