Beyond Angeles

On Wednesday afternoon during September, Janet took our son Jefren to the hospital to take X-rays of his foot. It had been bothering him for several months. While they were taking the pictures, he suggested taking some of his upper leg—lately that hurt, too.

There was a tumor.

That’s where the adventure really began. But before that, things had been building for months.

Here’s a little of what happened:

First Symptoms

In April, our 13 year-old son mentioned his right foot hurt. We thought he probably stubbed his toe unknowingly, and told him to soak his foot in a hot bath.

But when he kept complaining of pain in May, we started taking him to doctors. No one could find anything wrong with his foot. We took him to our family doctor (“growing pains—it will leave eventually”), a chiropractor (“can’t find anything, but if it still bothers you in a month, I’d get it X-rayed”), and, in June, a podiatrist (foot specialist), who said, “he has flat feet and needs arch supports, $300, and we’ll replace the pair once.” We got shoe supports from Janet’s father, who had a large shoe department in his store, but the pain kept getting stronger.

But by late summer, his foot was no better, and he now complained of pain in his right leg, just below the knee.

We gave him Tylenol, for the pain (as one doctor suggested), and calcium supplements—which did help— because we had read it helps both bones and muscle cramps, in case that was the problem.

Things get worse

Then Jefren started getting up at night, moving to the basement couch to sleep, which he said was more comfortable.

Eventually, he got up at night and just walked around—he was in so much pain he couldn’t get comfortable or sleep.

We found another doctor to take him to.

This doctor was an Ayur-vedic doctor—a “regular” doctor who added Ayur-veda to his practice.

We took him to Dr. Alan Seagull, who asked, as soon as we sat down, “have you had X-rays taken?”

We had forgotten the chiropractor’s advice, but it turned out for the best.

We said “no.”

Dr. Seagull told us lots of people have flat feet but don’t have Jefren’s discomfort, so there must be something else, too. When we praised him for suggesting the x-ray (since no one else had), he said he was just trying to cover any ground that had not been covered before.

He felt Jefren’s pulse, an ayur-vedic procedure to find imbalances, by resting three fingers on Jefren’s wrist. After a moment, he told us there was some imbalance—mostly pitta (too much “heat”). He said there were some things we could do which could “help significantly.” He gave Jefren an ayur-vedic herb to take with milk twice a day, an herbal oil to massage on his legs, plus some diet guidelines.

And he had the nurse make arrangements for X-rays at our local hospital.

The following Wednesday, Janet took Jefren to the hospital for the X-rays.

What the X-Ray Found

Thursday Dr. Seagull called.

He told us the radiologist had seen something on the X-rays. Dr. Seagull said he didn’t know what it was, so they were sending us to the University of Iowa Hospital (the University of Iowa Hospitals and Clinics—UIHC), a teaching hospital in Iowa City, about an hour and a half away.

“We’ve made an appointment for you Monday afternoon with one of the top ten doctors in the country,” he told us. “He should be able to tell you what it is.”

Dr. Seagull told us, “It could be anything—from something very minor to something very serious.”

He added that the natural tendency for parents is to expect the worst—and start worrying. “But that might not be the case, so don’t get very concerned yet.”

Janet was on the phone upstairs, while I listened in from the basement. One of us asked again what it could be.

Dr. Seagull wanted to reassure us, but he also kept the whole range of possibilities open.

Still, he ended by saying, “It might be something very minor.”

Janet didn’t know what to do with this. Neither did I.

Because we knew that our thoughts help shape what we experience, we decided to think positively: everything will be okay, it was just something minor: the doctor could fix it right there in the office.

But we really didn’t know.

We also didn’t know what to tell Jefren. We didn’t want him worrying for several days, especially if it was minor. So we told him simply that there was something on the X-ray, and we were going to see a specialist in Iowa City Monday.

Jefren was relieved—someone had finally found something. Now maybe they could fix it. I’m sure Jefren thought it was just something small.

I was less optimistic.

While I hoped everything would be okay, I did begin to worry. The doctor had tried to reassure us; he did just the opposite to me. I always assumed everything was okay until someone said it wasn’t. Now the doctor said “it’s probably nothing,” but I heard, “this is something serious.”

So, we waited and hoped, then Monday came.

Monday, Monday

Monday we drove to Iowa City. We arranged to pick Jefren up at school and for Eli (our eight-year-old) to go stay at a friend’s house after school.

Jefren’s appointment was at 1:00, but because we didn’t know our way around the hospital— and we wanted to have time to eat— we left around 11:00.

But by the time we left Fairfield, it was close to 11:30.

There was still enough time, so we weren’t hurrying, although we were going the 65 mph speed limit along a stretch of road known as “The Avenue of the Saints.”

That’s where things got interesting.

We’d been driving about 45 minutes (about half-way, if you include parking and getting inside) and my mind started drifting.

I was looking out the window to the right, and, without realizing it, started “drifting” in that direction. We didn’t really veer, just a slight leaning to the right.

Somebody must have thought it was dangerous, though.

Suddenly, an arm shot past my left shoulder, grabbed the steering wheel just above my hand, and pulled slightly to the left.

I snapped to attention.

Whoever it was then flew on in front of the car, turned, and smiled.

That had never happened before. I paid attention.

Whoever it was (an angel, I’m sure) flew in about six feet in front of the car, level with the roof. For the rest of the trip, he flew in front, often turning and smiling at me.

Smiling Angel

It was interesting. He kept smiling, as if everything would be all right. After a while, I started to think it would be.

He never spoke, just smiled, his white robes reaching down to his feet.

I settled down. I remembered that good and bad, up and down, are part of life. I knew this angel was not guaranteeing Jefren’s health today—saying “he was fine.” He only indicated that it would be for the best.

The longer he flew in front, looking back and smiling, the more settled I felt—that everything would be all right. At the same time, I realized that everything already was all right.

Life on earth is made up of change, everything is temporary, things come and go.

People constantly change, too. From young to old, short to not-so-short, thin to not-so-thin.

Eventually, everyone reaches God.

In that sense, if Jefren did “go,” it would be all right.

It would break my heart, I would miss him forever. Yet life continues. His would just continue somewhere else, where we wouldn’t be.

Insights

There was also the knowledge that even if something serious was wrong with our son and we did have to go through a lot (several months came to mind), everything would be all right in the end: Jefren would be fine.

When we got to Iowa City, we didn’t have much time. Maybe it was because we stopped to get gas, or drove slowly on the back roads, but there was only fifteen minutes for lunch.

We spent most of that waiting in line at a very crowded McDonald’s. We each got a sandwich and ate it in the car, racing off to the hospital.

When we got to the hospital, it turned out to be the sports complex. (Oops.) Fortunately, while walking through the parking structure, we found the back end of the hospital, where Dr. Gladstone’s office was. (That was who Jefren’s appointment was with.)

Once we got inside, we found ourselves in a waiting room with dozens of people. It turned out several doctors were in “clinic” that day. We told the receptionist we were there, then went to the lobby to wait.

Janet and Jefren sat at the end of a row of chairs along the back wall. There was one empty seat next to Jefren. The angel was still with us, so I sat kitty-corner to them, next to Janet, with an empty seat to my right.

The angel sat down beside me. I put my hand on the armrest between us, and he put his hand on mine, continually reassuring me.

We waited for about two hours.

The Waiting Ends

Finally, around 3:15, we were called back. A nurse greeted us, asked our names, and led us down a row of examination rooms to the last one. Ushering us inside, she told Jefren to have a seat on the examination table. Janet took a chair, and I waited until the angel entered before I went in, leaning against the table Jefren sat on.

The nurse told us the doctor would be in shortly, closing the door behind her when she left.

A Doctor Arrives

Dr. Sugarman came in first. He explained he was working with Dr. Gladstone. It turned out he was a resident who had completed his schooling and was getting experience in a specialized field (orthopedics).

(During Jefren’s hospital stays, residents usually saw him first. Staff (and faculty) doctors did stop by every day, usually after they had heard the resident’s report.)

Dr. Sugarman was kind and gentle, asking how long Jefren’s foot has hurt, where it hurt, and how much it hurt. Asking to see Jefren’s foot, he took off Jefren’s shoe and sock and gently stroked the bottom of his foot.

“Can you feel that?” he asked.

Jefren could.

He wiggled Jefren’s ankle, and asked Jefren to wiggle his toes. Then he asked Jefren to show him where it hurt.

He told us Dr. Gladstone would be there in a few minutes. We mentioned the X-rays—he’d seen them. Then he left.

We still had no idea what they thought Jefren had. While we waited, I was reassured again by the angel— “Everything will be fine,”

The Doctor Arrives

When Dr. Gladstone came in with Dr. Sugarman, he ran through the same questions and tests Dr. Sugarman did. Then he showed us the x-rays: there was a lump the size of an orange growing in and out of Jefren’s large leg bone (tibia) just below his knee. Someone told me things look bigger on x-rays, so we didn’t know how big it really was. But it grew from the middle of his bone out into the surrounding area, up toward his knee, and out into his other leg bone (fibula).

Dr. Gladstone told us that what Jefren had was serious. He said it could be treated, and that it was best treated by a combination of medicine and surgery.

“Just the medicine or just the surgery doesn’t work well,” he told us, “but both together usually does the trick.”

He told us the treatments would take a long time, but that Jefren’s chances of recovery were very good.

Dr. Gladstone spoke softly, smiling when appropriate. It felt good to be around him, even though he was giving us not-good news. The way he spoke, it didn’t hit us it as bad for some time— he kept telling us everything would be fine, acting like what Jefren had was normal as far as diseases go.

He obviously cared about Jefren. I was impressed by his kindness and compassion: he was giving us unpleasant news gently, with love.

He was a wonderful man, with full heart and clear mind.

He was also very perceptive. (After the surgery removing Jefren’s tumor—and saving the nerve within it— I asked Dr. Gladstone how he knew how to do that. He said, “People ask me that all the time, and, you know, I don’t know!” Just knowing, without knowing how— that’s what makes him one of the best.)

But as he talked, no matter how much we liked him, he said uncomfortable things.

He told us Jefren would be in a cast from his hip to his toes for a year, and somewhere during the conversation mentioned “chemotherapy.”

“Chemotherapy?” I asked.

The only reason I know of for chemotherapy is cancer. Dr. Gladstone never said Jefren had cancer.

“That’s the medicine I was telling you about,” he said. But he pooh-poohed it even as he said it, like “it’s no big deal.”

Then he told us there was a series of tests he’d like to do: chest X-rays (to see if there was any unusual growths in the lungs), MRIs of the leg (magnetic research imaging—a more detailed “inside” picture than an X-ray), and finally a biopsy— they’d make a small cut in Jefren’s leg and take a sample of the tumor to look at.

And he wanted to start right away.

Jefren’s Response

This was why it worked out best not getting X-rays when Jefren first had pain. Jefren’s pain was in his foot, so we would have X-rayed there—not his leg, where the tumor actually was. Nothing would have shown up, and no one would have thought to take X-rays again for a very long time. The cancer could have spread, and by the time we took X-rays again, it might have been too late.

During all this news, Janet and I were holding our own— but Jefren was getting more and more upset.

After Dr. Gladstone explained all this, Jefren spoke up.

“What does ‘serious’ mean?” he asked.

“Life-threatening,” Janet, Dr. Gladstone, and I answered almost together. Jefren didn’t like that at all. He didn’t like the idea of surgery, either.

Looking down, away from us all, he seemed lost and helpless.

“What if I don’t do any of it?” he asked.

“Then you’d probably die,” his mother and I told him.

Jefren was thunderstruck— completely unprepared. Maybe we should have mentioned before it could be serious, but we hadn’t wanted to worry him.

Instead, he was stunned by what the doctor told him.

As Dr. Gladstone spoke, Jefren sat quietly on the table, hunched over, looking more and more upset with every detail the doctor brought out, just wanting to get away from it all.

I wanted to comfort him, rub his back, give him encouragement and my support. Instead, I was told not to, that “you couldn’t take it” by a voice in my head.

Already, even before the doctor started talking about “serious” and “surgery,” I was feeling the effects of my quick lunch— I’m very underweight and hypoglycemic, so if I miss a meal, I get shaky and edgy.

And I was picking up all the hospital tension, as Jefren must have been. Janet, too, but she’s not empathic (taking on the emotions of others) as Jefren and I were. So all the “vibes” stored in the building from years of sickness and ill health—plus all the fear and tension in the family, crowded into our little room, was just too much for any of us. (I learned years later how much Jefren took on from around him; it was that additional amount—not just Jefren—that was why “I couldn’t take it” if I tried comforting and touching him.)

Seeing Jefren so alone, sitting there on the table, I wanted to comfort him, wanted to explain that all will be well. Not being able to made me feel even worse.

Luckily, Janet was sitting opposite him. She saw the shock on his face and moved next to him, gently rubbing his back as the doctor continued speaking.

The tests were scheduled right then: first the x-rays and the MRI for Wednesday, and the biopsy next Monday.

As we were leaving, Janet pointedly asked Dr. Gladstone if the tumor could be benign.

“It’s possible,” he allowed. But he was pretty sure it wasn’t.

Testing, 1, 2, 3

At first, we were going to have the X-rays and the MRI on the same day, to save a trip and so Jefren wouldn’t miss school. But when we called the insurance company, we found out we had a limit on outpatient testing (when you’re not staying overnight at the hospital), and the MRI alone reached that limit. So we moved the MRI back to Thursday.

We were told we had to meet with the anesthesiologist about the biopsy, so we arranged to do that Wednesday, when we were there for the chest X-rays.

Janet took Jefren Wednesday for the X-rays. Her trip went off without a hitch.

“The anesthesiologist said Jefren’s going to need an IV,” Janet explained when they got back home. “Which freaks Jefren out. But they have this stuff they can put on your hand to numb it before they insert it, and they’re going to do that for Jefren first, so he’s a little more comfortable.”

Other than that, everything went fine: the chest x-rays showed no growths in the chest. That was good news, because the doctors told us if his disease had spread, that’s where it would show up next.

So far, no one at the hospital had used the word “cancer” to describe what Jefren had— yet.

We were still hoping Jefren’s tumor was benign, even though the doctor thought the chance was slim. But while there was still some hope, we weren’t ready to accept the alternative.

MRI

Thursday, Jefren and I drove to Iowa City to take his MRI. It was a disaster.

We left half-an-hour later than we should. I don’t usually get anxious when I’m late, but for some reason I started getting jittery the last fifteen minutes of the trip. By the time we got to the hospital, we were fifteen minutes late. I panicked.

That’s why I left the keys in the car—with the car still running.

We found a good parking spot right away. But instead of settling down, getting out of the car and walking calmly into hospital, I scooted Jefren out (“hurry up!”), jumped out, and slammed the door.

Just as the door closed, I saw the keys inside.

I swore, but there was no time to deal with it now.

So we raced inside, followed several long corridors, and finally found the MRI department. But we were 15 minutes late.

They were running on time. Not only that, but we were supposed to check in at orthopedics— Dr. Gladstone’s department— fifteen minutes before our appointment. Nobody had told us.

They told us they would still fit him in, but they didn’t know when. First we had to find ortho and get Jefren’s records for them.

The receptionist gave us directions, which we needed. The hospital was huge, the equivalent of three city blocks. From MRI to ortho was an eight minute walk each way, and they were close together.

When we got to orthopedics, the woman handed us Jefren’s records, including his large X-rays.

I noticed a phone on the wall, and called security: could they come and help unlock the car?

They said someone would meet me at the car in fifteen minutes.

But fifteen minutes later, we were still trying to work out Jefren’s imaging at MRI. Jefren’s appointment had been at two-thirty, we’d gotten there at two-forty-five. By now, it was well past 3:00.

When they told us it would be at least another half an hour, I called security back and apologized. They agreed to send someone again (thank goodness). I made sure it was all right with Jefren (he was watching TV), then ran back out to the parking lot.

I waited for about five minutes. Then a security car pulled up.

“Are you the one locked out of your car?” he asked.

I told him I was, and showed him where the car was.

The security officer was very understanding— everyone at the hospital was, especially during our first several visits. Everyone there went out of their way, offering directions when we were lost, offering understanding and compassion about Jefren.

It took him a while, but finally the door opened. I jumped inside, turned off the engine, and looked at the clock.

The car had been running, parked, for almost two hours.

I thanked the officer heartily, then raced back to Jefren.

Jefren was still in the waiting room, watching cartoons. I sat down next to him and breathed a sigh of relief. I told him we got the car keys and asked how he was doing.

“Fine,” he said.

A few minutes later, they called him back for his MRI.

It’s a huge cylinder-shaped machine with a large round opening in the middle. They slip you inside the opening, then take the images.

About ten minutes after they called Jefren back (just long enough to get undressed, into a robe, and into the machine), I started feeling “buzzing,” a kind of uncomfortable fuzziness all over my skin. It wasn’t painful, just strange.

I knew they’d started his MRI. The feeling lasted about twenty minutes or so, then ended.

Five minutes later, Jefren came out. They asked us to wait to see if the scans came out okay (in case they had to re-do any).

While we were waiting, I looked at Jefren. He seemed to be doing so well, taking all the tests without too much whining or fussing. Underneath, he was nervous and afraid. At least this test didn’t bother him.

The receptionist told us everything was fine, so we headed home.

Since it was almost six o’clock, we stopped at the bagel place Jefren loved first. And we got gas for the car.

The next major event was his biopsy.

© David Adelson. All rights reserved.