We get legal advice

One evening between treatments when we were all home, Nicki, our lawyer friend, came over to meet with Janet and me. She brought two huge legal books, each the size of a small suitcase. We had told her of the $776 monthly allowable income with Medicaid, and that we couldn’t even have people pay our bills for us.

That’s why she brought the books. We looked up the welfare code, where she discovered that money paid directly to vendors on our behalf does not count toward our income in this situation. She found several other useful points, marking them down.

Then she said, “Why don’t you just apply for State Papers?”

“I thought we had to be turned down by Medicaid first,” I told her.

“Well, that’s not completely clear,” she said. “And Mary Fergusson at the county nurses office suggested you should. She works with them all the time, and she felt it would work. Besides,” she added, “you do have a rejection from Medicaid.”

So we said okay. State papers was what I really wanted.

Nicki told me to go talk to Mrs. Hawkins at the courthouse. “She’s a wonderful, feisty old woman,” Nicki said. “Her office is on the third floor. Be sure to bring these papers (pointing to all our financial records) with you.”

We apply for State Papers

A few days later, I went to see Mrs. Hawkins. She was everything Nicki had said. Her bright white hair caught the sunlight, her eyes were bright, alert, and sharp.

When I told her I wanted to apply for state papers, she cut me off.

“You have to have at least six thousand dollars in bills,” she said, “before you can apply.”

“My son has cancer and is going through chemotherapy.” I told her. “We passed six thousand long ago.”

She looked at me with sympathy, offering a seat.

We got along famously. When she found out it was our son, she was so sweet and concerned. And when she saw how much our bills were, she really was supportive and understanding. She said people came in to apply all the time, sometimes for X-rays that cost a hundred and fifteen dollars.

“I understand some people have trouble coming up with that kind of money,” she said. “But we’re only allowed so many people per year. If we take those people, then there’s nothing left when someone comes in with something like this,” she said, waving her hand over our collective bill—now reaching the hundred thousand dollar mark.

She said she’d put everything together, and told me to come back in a few weeks.

By now, it was December. If State Papers didn’t come through, we could still apply for Medicaid before the end of the month— they will cover expenses for the month you apply plus two months before. That way, they would cover any bills from October on, which was all we really needed.

More money (December Tzadakah)

During December, we also got a phone call from the president of the synagogue. We weren’t home then— he left a message— and when we called back we talked to his wife.

“We wanted to let you know there has been a tremendous response from the letter we sent out,” she said. “People from all over the state have sent letters and are praying for you,” she told us. “People have given generously, and there’s now almost three thousand dollars in the Tzadakah fund you can use.”

Thank You, God!

We said some extra prayers of gratitude that day— and many more during the coming months. Several people made monthly commitments, and every month for the rest of Jefren’s treatments, we were able to meet every extra expense that came along. All those people’s generosity got rid of our concern about money, letting us focus all our attentions on healing Jefren.

We were so grateful— and still are. We sent this back:

“Our deepest gratitude goes to all those who have helped us in this time of need. Your love, generosity, and prayers have helped change a situation which could have been devastating to one that is not only manageable, but heartwarming, and is bringing us great spiritual growth. For all your kind Blessings, we thank you. May your generosity return to you manifold. May the Lord Bless you and keep you, and grant fulfillment to your deepest prayers.”

“Thank you all so very much.”

“The Adelsons”

So, with the Tzadakah fund and our outpatient insurance rider, we were able to cover all of Jefren’s medical expenses except UIHC.

A change in plans

Jefren’s treatment schedule was way off by now. Originally, he was scheduled to finish first two five-week cycles of chemo at the beginning of December. His surgery to remove the tumor was supposed to have been two weeks later, around December 15.

It was already past that, and Jefren was just finishing week four of cycle two. He still had one more week of treatment left— but he never got it.

He’d been in the hospital for a week already. His next treatment was to begin that day. We were wondering if Jefren could have at least a couple days home before they began the next treatment.

We asked the doctors in the morning. They said they doubted it, but they’d let us know.

A couple of hours later, the nurses told us Jefren was going home. It always took a long time to get Jefren ready: there always seemed to be more medicines for him to take, prescriptions we had to wait for, our own packing, and Jefren’s check out physical. We also had to check out of the Ronald McDonald House; which meant cleaning our room for inspection.

It was several hours before we were ready to leave. During that whole time, we thought the doctors had decided it would be okay for Jefren to have a two-day break. We didn’t find out the real reason Jefren was going home until much later.

Around three in the afternoon, I found a nurse and asked her when Jefren had to be back. She was surprised. “Not till after his surgery,” she said. “His liver is enflamed, which means his body is not ready for another treatment. When this happens, the protocol says to just skip this treatment. He doesn’t have to come back till his next scheduled treatment.”

Which was after his surgery. So Jefren could skip a week of chemo, which meant he could heal even more before his surgery.

Meet with Dr. G.

re: upcoming surgery

Before we left the hospital that day, we were scheduled to meet with Dr. Gladstone. We’d seen him in November, when he dashed our hopes of no surgery, reminding us that what Jefren had was best treated by a combination of surgery and medicine. “One alone doesn’t work,” he’d said. “But both together seem to do the trick.”

He also reminded us the tumor had a bone matrix, which meant it could only shrink so much. And it was shrinking, thank God. As we were leaving, he told us to see him again before the surgery “to give us all the information” about it. Today’s meeting was to get that information.

None of us were prepared for what that information was.

From the first time the doctors had mentioned the word “amputation,” the major focus of our prayers had been that Jefren would be “healthy and whole,” that his leg would be fine. It never occurred to me there could be a reason for him to have his leg cut off, and if there was one, I didn’t want to know about it.

A sudden —unpleasant —surprise

When Dr. Gladstone came into the examination room that Thursday, he seemed different. Usually when he came in, his heart flowed everywhere. This time, all his energy was around his upper torso, neck and head, a protective energy shield rather than his usual giving, supportive flow.

He greeted Jefren, Janet and me, then asked how Jefren was doing. We told him “fine,” and, while he usually would check Jefren’s leg, didn’t this time (or if he did, it was a brief, “looks good.”)

Then he started talking about the surgery, or rather, the options about the surgery: whether Jefren/we wanted to try to save Jefren’s leg, or whether Jefren/we wanted to have it amputated and Jefren would get an artificial limb.

Truthfully, I cannot even begin to reason why anyone would choose to have a limb cut off. It’s been the key example of stupidity that I use: “That’s like cutting off someone’s arm because they have a bruise,” I often say. Then people would go, “Oh, yeah. That doesn’t make sense.”

Now, here we were in a discussion with one of the top ten doctors in the country, who we respected highly, and he was explaining the option of cutting off someone’s leg as if it made sense, as if, in the overall scheme of things, it was something you would consider: gee, getting shoes on every morning is a real pain, Wouldn’t it be more convenient to just have removable legs?

I’m sorry, but get real. How could you consider that when there’s a choice?

But that’s exactly what our doctor was doing right then: getting us to consider the possibility of cutting off his leg for convenience.

The worst part was, that after years of having to justify it when there was no choice, he was making sense logically, but that did not take into account feelings. Dr. Gladstone explained that Jefren would be able to run, jump, play sports, lead a normal life with the prosthetic leg, only that he would have no feeling in his foot.

We asked if it would stay on all the time. He said, “No, you’d take it off for bed.”

We mentioned how it might be uncomfortable, like my grandmother’s false teeth when I was a child. He said that might have been true years ago, but that now things were much better, and it would be fine.

He told us that in the best case situation for Jefren’s leg, if we went ahead with the re-constructive surgery, would be that he might not have full use of his foot, and the foot might dangle. He said Jefren might loose sensation in his foot because the nerve that goes to the foot went right through the tumor, which was probably why he had all the pain in his foot in the beginning. Without sensation in his foot, he would have difficulty with moving the foot, and if he ever got a bad cut on the bottom of his foot, he could not be aware of it and bleed to death.

We asked if there was any possibility of saving the nerve.

“No,” he told us, shaking his head.

Dr. Gladstone explained that because a major blood vessel went through the tumor, it would be removed. There was another major one, he said, and if it picked up the difference, everything would be fine. But if it didn’t, then Jefren’s foot would “dry out:” without blood, nutrients would not reach the area; the skin and muscles would become diseased and start peeling off. If that happened, Jefren would have to come back later and have the leg removed.

He then said that because the tumor grew through the growth plate (one of four areas bone grows from in the leg), one leg might be shorter that the other. But he did say it was possible that the other growth plate on that bone would grow more to make up the difference. That was the only thing he said that was encouraging.

All in all, he painted a bleak picture of Jefren’s chances for re-constructive surgery and a grand picture of Jefren’s chances with an amputation.

In retrospect, I felt bad for Dr. Gladstone for having to go through that. I’m sure he’s put in the situation where there is no apparent choice. Then he has to justify amputation to himself so he can justify it to his patient and their family. And present it in a positive, hopeful light.

When he first came in, I thought we’d talk about amputation for minute or two (if at all), then get down to the details of the re-constructive surgery itself.

Instead, Jefren and Janet were buying everything Dr. Gladstone was saying. They accepted the possibility of Jefren having his leg removed, and discussed it as if it was a decision they had to make. They talked about it seriously, actually considering telling the doctor, “Sure, go ahead, cut off the leg. He’ll be okay without it.”

Somehow, Jefren took on the decision himself, as if he’d have to make it alone, without Janet or I. It was too much for a thirteen-year-old. Overwhelmed, he started crying.

Janet was also very upset. Unfortunately, tired as I was, closed in that small room with them, empathic as I was, I started thinking there must be something to this, otherwise why would the doctor go on and on about it?

We asked the doctor to give us some time alone.

“Of course,” he said, leaving. We comforted Jefren, tried to let him know this wasn’t his decision alone. We gave him love and support.

Jefren asked me to ask God and I did, but couldn’t get any clear answer with all the powerful emotions whipping around in that room. I heard a “do not remove the leg,” but, tired as I was, I couldn’t be sure if that was from God or just me.

But I explained to him that God was talking to him, giving him his answer: “The feeling that you have, that’s making you cry even considering this, is God’s way of telling you ‘don’t do it.’”

Jefren never recovered emotionally that afternoon—we ended up taking him back to his room upstairs, still crying. We asked Dr. Gladstone if we could have a few days. He said that was fine, just if we did go with the re-constructive surgery, he needed to know several weeks in advance to schedule it. If we did the amputation, that could be done anytime.

He gave me his e-mail address, and we left. We went back upstairs, finished checking out, and went home.

Jefren’s reaction

I had driven up to stay with Jefren that morning. But since Jefren was going home, we all just drove back. Jefren opted to ride in Janet’s much more comfortable car, so I drove home alone.

During their drive, Jefren and Janet talked about what the doctor had said.

“It’s a big decision,” Janet said.

Jefren sat quietly, looking out the window.

“It’s bigger than I can make,” he said.

We all recovered for a day or two, then I called Amy. She said she never saw Jefren losing his leg, and unless there was some new development (I should ask the doctor), it was okay just to go ahead and have the re-constructive surgery.

That was a great relief, because it was what I always felt we should do, up until that meeting, anyway. So it was good to hear her confirmation.

Later that day, I told Jefren what Amy said, that he should just have the surgery. He just nodded “okay.”

Decision gets made

We sent Dr. Gladstone an e-mail, asking him to call us.

Twenty minutes later, he called back. I asked him if there were any new developments with Jefren’s leg since our first meeting— was there any reason he was pushing for amputation now?

He said no, everything was the same.

If that’s the case,” I told him, “then we want to go ahead and do the re-constructive surgery.”

He said that’s fine, and he’d go ahead and contact Dr. Walton regarding chemo treatments and then contact the operating room to schedule it.

“We want to keep on track with the chemo, and not loose momentum, but we want to be far enough out of it to not complicate the surgery because of it,” he told me. “We want the body to be as strong as possible.”

Once he knew when the surgery would be, he would get back to us.

A week later, we were told Jefren’s leg surgery would be January third.

Begin prayer for surgery

When we asked Amy about surgery (re-construction or amputation), she told us we should set up a prayer for the surgery and to begin now. She said to ask that everyone involved with Jefren’s treatments be open to God’s Divine Wisdom, and that they be Guided by That. She said to include everyone involved, from doctors to accounting to nurses to housekeeping...absolutely everyone.

So we did. Sitting at the kitchen table that night, Janet and I took each other’s hand, closed our eyes and prayed.

“Dear God, my Love,” I said, “we thank Thee for all Thy Blessings, and for meeting all our needs. We thank Thee for taking care of Jefren, helping him grow in strength and health. We thank Thee for all the doctors and nurses who love him, working for his improved health and quick recovery.”

“Dear Lord, we thank Thee for Thy Love, Thy Help, and All Thy Blessings.”

“God, we ask Thee for Thy Help, Thy Wisdom and Thy Guidance. We ask Thee that everyone involved on any level with Jefren’s surgery be open to and receive Thy Divine Wisdom and Guidance, that Jefren may retain his leg and grow quickly to health and wholeness. We ask that the doctors, the nurses, the surgeons, be open to and receive Thy Divine Wisdom and Guidance. We ask that the operating room staff, the anesthesiologists, the hospital administrators, the cooks, the people who deliver food to the patients, housekeeping, accounting, purchasing, people from the Chaplain’s office, volunteers, staff, the people in the Gift Shop, student nurses, the operating room staff, the people who wheel the patients back to their rooms after surgery, the people who work in the parking garage, hospital maintenance people, absolutely everyone who in any way is connected with Jefren’s situation be open to, receive and be Guided by Thy Divine Wisdom and Guidance.”

Then we thanked God for Her Blessings, and for taking care of Jefren.

We said a similar prayer the next day and every day until—and including—the day of Jefren’s surgery. Sometimes we did it together, sometimes separately. Sometimes, if we were in different cities, we said prayers on the phone together.

We never missed a day, adding absolutely everyone at every level of the hospital I could think of. Mentally, I would take a tour of the hospital (at least the parts I’d seen). I added some new personnel almost every day, including the library staff, the in-hospital teaching staff, the Child-Life people, the construction people re-designing the first floor—everyone, every day.

It helped save Jefren’s nerve—the one the doctor said there was no way to save.

We get State Papers

Mrs. Hawkins had told me to come back in a few weeks. I did, December 28th. She told me the judge had already signed the order: State Papers would cover everything from July 1st that year to June 30th, 1997.

“You’ll have to apply again if you need coverage after that,” she told me. “And it will have to be more than six thousand dollars.”

I figured Jefren would be done by then. That’s what we prayed for, anyway.

When I got back to the car, I immediately said a prayer of gratitude to God. We said a lot of prayers of gratitude those days.

Then I went home and told Janet.

Financially we were set.

We Get a dragon

Sometime in December, Jefren, Eli and I went to one of the Iowa City malls. Inside was a store with lots of neat items: posters, candles, lava lamps, oddities. We were looking for a toy store, and this was what we found.

One of the things they sold were statues. Jefren discovered them and called me over. There was an impressive display: gargoyles, griffins, unicorns and our favorite, dragons. The whole top shelf was lined with dragons. Sitting, standing, scratching, hatching.

The second from the left caught my eye— and held it. It was a beautiful peacock-colored dragon sitting regally on his haunches. His blue eyes sparkled, and when I looked at them, it felt like something was looking back.

I was in love! This was an incredible statue. I had to have it.

The other statues were nice, too— but there was something special about this one.

It was almost a hundred dollars. I didn’t have the money with me, and Janet would have been thrown off if I spent that much money without talking to her first.

So we left the store and, regretfully, left the statue.

The next day, I went back with Janet. When I showed her the statue, she agreed it was beautiful. I said let’s buy it, and she said okay. That was a surprise—usually it takes a while for her to come around. We didn’t have the money with us, so Janet put it on layaway.

Several days later, Jefren had an appointment to take a special antibiotic at the hospital. It only took an hour. On the way home, we stopped to pick up the statue.

Jefren was going to be home for several weeks without treatment until his surgery early in January, so we wanted to pick up the statue then, rather than wait.

On the way home, there was a major snowstorm. Instead of the usual hour and a half, it took well over two hours to drive home. We saw an accident— a car skidded, bounced off the side of a flatbed truck, and skidded off the road. Fortunately, no one was hurt (but the body work on the car would be expensive).

Jefren was in the back seat, lying down. The whole way home, he held the statue, still in the box, in his lap. We stopped to pick up Eli at a friend’s on the way. When we got home, we cleared a place on the living room/kitchen island and set up the statue.

“Nobody touch it,” I told everyone. “If your friends touch it,” I told the boys, “they’ll be asked to leave for a week.” I figured otherwise, all the kids in the neighborhood would rub their sticky, sweaty hands all over it, and in no time our beautiful statue would have all it’s paint rubbed off. And this one was a keeper.

We get a real dragon

I was real happy with the dragon statue. We don’t often get things like that (we’re not collectors), so this one was special. Whenever I looked in it’s eyes, I felt like something was looking back. Whoever made this statue, I thought, did an incredible job.

By then it was pretty late, so we all went to sleep.

The next morning, I went into the living room, don’t remember why. Standing in the middle of the room, I looked at the statue from six feet away.

Something moved to my right. Turning, I became aware of a life form. I couldn’t “see” it— I felt it. It was about twelve feet long, crossing in front of the couch and up to my shoulders.

I was stunned. It was a dragon.

I swear, it was a dragon.

All my life, I have “seen” beings that weren’t visible to others— the angel I saw on the way to the hospital that day was not the first. But this was the first dragon.

I was delighted. I welcomed him and tried to adjust. Who was going to believe this?

Several hours later, I tentatively mentioned it to Janet.

“I’m not sure how this works,” I told her, “But I think we have a real dragon.”

I told Amy about it.

“I think we have a drag—”

“He’s Wonderful,” she interrupted.

Amy was the first person I ever met to acknowledged those things I’d been seeing all my life. That was another reason I loved her.

“What do I do with him?” I asked.

“They’re easy to please,” she replies. “Just talk to him.”

Over the next few days, I tried to get his name. It took awhile. At first, I thought it was “Lancelot,” but it wasn’t quite right. Next came “Leacelot” (pronounced lee-ay-ce-lot), then finally “Leacafere.” I was sitting on my bed when I got it, and he came bounding down the hall excitedly when he heard it.

I thought at first he came with the statue, as if they were attached somehow. A long time later, he told me he followed the statue— he thought it was beautiful, too.

Meanwhile, what do you do with a dragon? Over the next many months, before he left, I found out. But that’s a different story.

For now, know that he somehow helped all of us, including Jefren— one time I came out into the living room to see him curled around Jefren, who was asleep on the love seat. There were other things, too— late at night, he told me stories I could never forget, showed me colors I had never seen, places I could only dream.

What’s this all got to do with chemotherapy?

It’s to help you understand: there’s a lot more going on in this world than you’ve ever dreamed.

© David Adelson. All rights reserved.