Childhood Leukemia Story - Jason - 12 - Peace in the Storm

Jason Story of Child LeukemiaPEACE IN THE STORM

November, 1986, marked one year since Jason’s transplant. He was doing fine. School was great fun. Hospital visits were monthly and uneventful and Jason was happy. He started working with the Leukemia Society in the annual telethon and other fund- raising events. His involvement enabled us to meet many wonderful people whose lives had been touched by the disease. There were Paul and Joan, a young married couple whose niece had leukemia. Paul had raised money for the society by running across the state. Debbie and Jon had a daughter who was just finishing a transplant. They had gained courage through reading about Jason in the papers, having admired him even before their daughter was diagnosed. Tony had passed the eight-year point in remission and had become a doctor. The list went on and on. Everyone played a special role for us, whether we helped them or they helped us. It was comforting to meet others that understood.
The following letter from “Jim” in Salem, MA, was typical of the reaction people had to Jason and his circumstances:
Dear Jason,
lam writing this letter to thank you for the influence you have had on my life. Even though we never met, you have changed my outlook on life perhaps more than anyone else l am acquainted with. I have followed your plight through the many articles written in the Lawrence Eagle Tribune and am eternally grateful. Your ability to cope and your faith in God are an inspiration to us all. I have not been, for most of my life, a religious person, but you have instilled in me a new-found faith in the Lord and His ways. I believe that through you He has reached me in a way only His wisdom could know. The unquestioning faith that you have exhibited moves me beyond what words can describe and this in someone as youthful as you is a testimony to His power.
It is difficult for me to comprehend what purpose I have in His plan but you certainly inspired in me something I could not have accomplished without your influence. I pray that He will allow me to serve in a way that will help show others what I have learned through you.
In His name,
Jim

Getting ready for school
Getting ready for school 

There had been serious business problems earlier in the year which led Wes to change jobs and we felt that perhaps a total change would do us all good. On February 1st we moved to Saugus, Massachusetts. Wes was promoted in the company he was with and felt comfortable with his new responsibilities. We had prayed for guidance, as we really did want to be where the Lord wanted us. Relocating brought us closer to the Saugus Gospel Hall, and to beloved friends there. Our new home was a white house with a front porch, something I had always wanted. It was in a rural setting with woods and marsh and was perfect for us. Again, we were so thankful for the way things had turned out.
The children adjusted to their new school immediately. I still can’t believe how they reacted to the move. Perhaps I had borrowed fears from my childhood. I vividly remember moving when I was in the second grade. It was anything but calm. Every morning I cried all the way to school. My children surprised me by their rapid adjustment and I thought it was wonderful.
The year passed by and before long Wes and I were coming up to our 10th anniversary It didn’t seem possible, but the year was 1987, so it had to be. Where had the time gone? Now we had been together for ten years. We also realized that the date of November 5 meant that Jason’s transplant was two years behind us. That was significant. Studies had been done that showed that most patients that reach two years do not relapse. While we had always known that, statistically, Jason could — and perhaps would — relapse, we started to think that just maybe he was really cured. On November the 5th itself Jason made a public service announcement for the Leukemia Society It was filmed in a blood donor room as Jason and a sportscaster, Mike Dowling, talked about the need for Leukemia research. His father had died from the disease when Mike was eight — Jason’s age. Jason did a fine job and everyone told him he looked wonderful.
His comment was, “Sometimes people look at me and say I look wonderful, it’s a miracle I look so good. They smile at me and, of course, I smile back because I’m glad too.”
We spent the evening with Paul and Marie, friends and old neighbors who lived near the studio where this program had been taped. We had planned to officially celebrate our anniversary over the weekend. We spent Friday night in the same hotel we stayed in on our wedding night. Wes’s mother stayed with the children. It was very nice to share a wonderful dinner and night away from the rest of the family. When we came home the following day they had made cards and written notes to us. They were so proud of themselves, as were we.

Uncle Fred and Aunt Tre 

Uncle Fred and Aunt Tre


The following week was Jason’s hospital visit. Bryan, Jason and I arrived at the Mass General. The boys were listening to a tape as we pulled into the parking space. We climbed out of the van I drive and closed the doors. Just as the last door slammed I became aware of an engine running.
Pointing to the car next to us, I said, “That person must have left their engine running.”
As the words left me I realized the noise was coming from the van. This was by far the most ridiculous thing I had ever done. What in the world could I do? We walked into the hospital and I thought I would first call Wes, who was traveling to Springfield. Fortunately, Wes has a car phone, and I was able to reach him on the Mass Pike. He did not take too kindly to the news nor to the idea of bringing me his keys, and suggested I try to find help and call him back before he went out of range. But help was not to be found. No one could break into an Astro van with stationary side windows, so I called Wes back. I took Jason upstairs to the doctor’s office, explained the crazy situation, and left him. They would do his blood tests and exam while I waited with the van. Half an hour later Wes drove up with the spare keys, shaking his head at his scatter-brained wife. Later on we’d be thanking God in amazement that my absentmindedness was His way of making sure Wes would be with me for the consultation with the doctor.

Jason and his four-wheeler 

Jason and his four-wheeler

After Jason was examined I showed the nurses his recent newspaper article celebrating his second anniversary. Their reaction was a bit odd. They did not seem as happy as I had expected and they did not look me in the eye. We went in to see Dr. Kretschmar, who had only recently taken over Jason’s case while Dr. Truman was away for a year. We read concern on her face. She explained that during the exam they noticed that one testicle was larger than the other. She wanted a surgeon to look at it and possibly get a biopsy. We asked what the problem might be.
Again we heard the dreaded words, “It might be leukemia.”
As we waited for Dr. Lee, the surgeon, my mind raced back over the last few years. Had we come so far only to find out we were no better off than we were four years ago? I could not imagine repeating those years a second time and I prayed that the surgeon would give us encouraging news. We all liked Dr. Lee right away. He began laughing and joking with Jason and Bryan as soon as he met them. After examining Jason carefully he decided that the smaller of the testicles might be abnormally small due to the past treatments. Just to be sure, he would do a biopsy. The appointment was made for the following week. We left his office and returned to the clinic.
As we neared the office we met Sue.
After Wes and the boys had walked past, she turned to me.
“Mrs. Vitale, do you believe this — I am so tired of this! We go along so well for so long and then her voice trailed off.
Why shouldn’t she be tired of this? Working so hard to fight cancers, trying to keep these children alive only to fall back so many times had to be terribly discouraging. I told her what Dr. Lee said. Sue was hopeful but cautious. She had been in this field long enough to know the danger signs. I sensed that she leaned towards the theory that something was wrong. Jason’s bone marrow was clean. The slides had been read from the aspiration that morning and there was no leukemia. His spinal fluid was also clear and his blood counts were good. All we needed was that biopsy.
Once more our family and friends reached out to help us. Everyone wanted to do something to keep us from feeling let down and alone. It was reassuring to know that we had so many caring people around us. We told Jason what was happening, that it might be nothing but that it could also mean a relapse. We explained about the biopsy as well. None of the news seemed to bother him. He wanted to get the biopsy over with but was not worrying.
“God will do what is best,” he said and left it at that. ‘When we returned for the surgery, Jason, all smiles, talking about riding four wheelers, went off with the doctor. An hour later he was back, a very different little boy. The anesthesia made him feel generally miserable. It was so hard to wake up. He was sore and whiney and thirsty. Somehow we managed to dress him and take him home. The pathology would not be completed until the next day. So, again we waited, but not so patiently.
Finally, the following afternoon, we got the results. Actually Wes had called the doctor from a business appointment and was on his way home to tell me when I, having heard nothing from the doctor, called them as well. Dr. Kretschmar apologized for not having called me. Having spoken with Wes, she had assumed he would tell me.
“Basically, the biopsy showed that there is leukemia there.”
Leukemia there . . . leukemia there . . . The words pounded in my head as I very calmly asked what we were to do now.
No real answers came.
“We’ll have to wait and find out more about this. Not many transplant patients have had testicular relapses and there is very little data. Tomorrow we’ll be contacting other doctors in transplant centers.”
Leukemia there . . . leukemia there.
Wes drove in the driveway. His mother was there, outside with the children. When she came in we told her. She seemed to shrivel. Wes told her all that we knew. He said we didn’t know what was ahead and that God would give all of us strength. With the Lord’s help, we had done it before and could do it again. Wes’s words pounded in my head as well, “do it again. . . do it again. .
I wanted to yell, “Be quiet, and just stop talking!!!”
But instead I nodded. I did not want to do it again and, for
the first time in our experience, I did not want Jason to be sick
again. Why were we going around in circles? Why had we been given these two years if he was to be taken anyway? My strength was gone now. I, who always tried to be prepared for things like relapses, had actually been caught off guard.
When we left California we had known what the chances of relapse were. Jason had a 25% chance to live beyond five years. That left a 75% chance for relapse. I had accepted that and almost expected it. However, as time went on, it grew easier to believe otherwise. When two years had passed I started to think that Jason had indeed won the battle. The timing of this relapse was terrible. I did not know how to deal with my emotions. Perhaps exhaustion played a great part in how I felt. Just thinking about the past and imagining the future left me feeling like I was too tired to go on. If only the world could stop and give me time out. Everything was happening so quickly that it was becoming a blur.
There were no answers this time. Always before we had known what we were aiming for. What now? How could we explain this to a nine-year-old when it made no sense to us? Wes called Jason downstairs and the three of us went into the living room. Jason rested on the couch as we sat very close by. Wes told him that we had heard from the doctors and that there was leukemia there.
"There is?” He looked up at his dad, wrinkling up his cheeks, “There Wes nodded and went on to say that we weren’t sure what was going to happen and that we needed to trust God more than ever. Jason acted like that was the only natural thing to do. He asked about chemotherapy. We told him that the doctor thought that would be the treatment or at least part of it. Jason thought about that for a minute. A few tears ran silently down his cheeks.
He wiped them away and quietly said, “I don’t want to do that again.”

Speaking at a Leukemia Event

Speaking at a Leukemia Event

How could we blame him? I had never had chemotherapy or spinal taps or bone marrows and I didn’t want to go through this again, either. This poor little boy had been through so much yet he was not breaking down, just simply voicing what we all felt. Unfortunately, we all agreed that we didn’t have a choice. We also agreed to do what the doctors said because they had much more experience with diseases like leukemia than we did. Jason resolved to be brave and trust God no matter what. We would have to do the same.
It was a frustrating time for everyone involved. We were used to having an established plan of attack, not indecision and confusion over treatment. Jason was scheduled for two weeks of daily radiation treatments, to be followed by a three year chemotherapy protocol. But, on our first appointment with the radiation department, I suspected something was wrong. They examined Jason, asked a lot of questions and told us to go home and come back tomorrow. There were some things they needed to discuss with Jason’s doctor.
Before the appointment on the following day we received a call from Dr. Kretschmar. She explained that the radiation department was very uneasy about giving Jason radiation. The doctors in California had been contacted and it was the general opinion that the amount of radiation needed to kill the leukemia in the testes, added to the amount previously given, would cause very unpleasant, chronic side effects. These could include rectal fissures, diarrhea, etc. It sounded awful. So radiation had to be ruled out. That left surgery and chemotherapy. The best thing to do would be to remove both testicles, thus removing the leukemia. Following that up with a protocol that included many drugs Jason had already had, it was felt that he would have a 10% chance of surviving. While that wasn’t much, it was much better than nothing. We did not have a choice. We felt a sadness in the surgery though, because it was taking away part of his body. I couldn’t help but feel a bit guilty as he was wheeled away once more to the operating room.
A few nights after Jason’s surgery, I sat in our weekly prayer meeting at the Gospel Hall, feeling exhausted and defeated. Just when everything seemed to be going so well, disaster struck. Why was life so unfair?
Shortly before the meeting closed a passage of scripture was read: And the same day, when the even was come, He saith unto them, ‘Let us pass over unto the other side. ‘And when they had sent away the multitude, they took Him even as He was in the ship... And there arose a great storm of wind, and the waves beat into the ship, so that it was now full. And He was in the hinder part of the ship, asleep on a pillow; and they awake Him and say unto Him, Master, carest thou not that we perish?’ And He arose and rebuked the wind, and said unto the sea, ‘Peace be still. ‘And the wind ceased, and there was a great calm. And he said unto them, ‘Why are ye so fearful? How is it that ye have no faith?’ And they feared exceedingly, and said one to another, ‘What manner of man is this that even the wind and the sea obey him?” (Mark 4:35-41)
The Lord used these verses to speak to my weary heart. Surely He knew all about the storm when He said “Let us pass over unto the other side.” The disciples should have realized that and trusted Him. He certainly did not intend for them to perish. Perhaps they missed out on something by being so afraid. Suddenly it all fit together. The Lord understood! He knew about every storm in this passing over and He was there. He wanted me to trust Him, for He was in control. He alone was able to stop the winds and calm my fears. I realized, with shame, He could say to me precisely what He said to those men that day, “Why are ye so fearful? How is it that you have no faith?” No one knew what a change had taken place in my outlook that night. I was ready to face tomorrow because the Lord of Heaven cared for me and for my little son.
God seemed to be preparing Jason as well for the coming storms. One day he approached Wes in the upstairs hallway at home. He had just been reading his Bible and said, smiling, “You know, Dad, you have never disappointed me, but you could. God has never disappointed me, and he can’t.”
Not long after the surgery the chemotherapy began. Fortunately a port-a-cath had been inserted in Jason’s chest while he was in the operating room. This device enabled intravenous drugs to be given without searching for a vein, making life easier for Jason. The drugs in the new protocol were not difficult to tolerate. The one exception was ARA-C.
This drug was infused subcutaneously for four days in his abdomen. Jason had to wear a small pump around his waist during that entire period. The dreaded procedure was repeated every eight weeks. The side effects of the treatment, low blood counts and infection, caused him to be hospitalized more than once. Eventually the drug was eliminated, which was a cause for celebration.