Childhood Leukemia Story - Jason - 14 - Unprepared

Jason Story of Child LeukemiaUNPREPARED

The children were saddened by Rebecca’s death. MaryEllen was especially disappointed. She had looked forward to having a baby.
“You lied, Mommy,” she said one day as she looked through the drawers in the nursery. “You said Rebecca would wear these clothes and she never wore a single one.”
We had many discussions about heaven and how Rebecca was happier there than she would have been here. As we prayed with the children before bed Wes always thanked God for her place in His presence. That helped us all remember that knowing where we will spend eternity is what really matters. In a coming day, it will not make any difference that Rebecca reached heaven before the rest of us.
Jason dealt with the loss of his baby sister remarkably well. At first I was concerned that he might be internalizing his true feelings. Slowly I began to realize that he had a better grasp of life and death than I did. One night as he and Bryan were talking Bryan was lamenting the fact that Rebecca died.
Jason said, “It’s not that sad. She’s in heaven.”
He knew what mattered! Jason had seen friends die. Those that he knew well and cared for had gone. This was a baby that he had never known. It was enough to know that he would meet her in heaven.
If only it had been that easy for me. The emptiness I felt is almost impossible to describe. There was also a strange sense of this whole tragedy being a kind of rehearsal. As morbid as it sounds, I had found myself wondering many times about Jason’s possible death and what it would be like for Wes and me to have a funeral for a child we loved. Now I knew. I also found out that life goes on after we leave the fresh grave. How I resented that fact!
While my recovery was slow Jason was his happy self. He had all sorts of plans for the summer. He went off to Pittsburgh to visit his aunts and uncles, then on to Philadelphia to visit his dear friends, the Olivers. His illness and treatment rarely affected his love of life and his good nature.
One of his favorite pastimes was to go for long walks with Wes at night. The bond between them seemed to deepen even more. Knowing Jason’s life might be shortened by the disease he was fighting, Wes made a point of pouring spiritual truths into Jason’s young heart, stressing what a privilege it was to live each day for the glory of God. They had wonderful talks as they walked along, hand in hand, through downtown Saugus. More than simply having a father and son relationship, they became best friends.
Months passed relatively uneventfully, until an entire year had come and gone since Rebecca had so briefly visited our world. New sister Sarah

New sister Sarah

Just as the summer of 1990 began, a beautiful little blessing named Sarah Elizabeth was born into our family and stole our hearts. She thrilled us all and was a tremendous help in recovering from the previous year’s disappointment. When school began again Jason was a fifth grader. This would be his last year in elementary school. It seemed like only yesterday he had been a baby the size of Sarah. Where had the time gone?
Jason loved the fifth grade. There is something enjoyable about being one of the big kids and being looked up to by the younger students. He already was talking about the end of the year festivities. The class would go on special outings, swim at the Y1VICA and have a pizza party Nearly every day he’d tell us about something special that made the year exciting. He was working hard, earning excellent grades and feeling well. December would mark three years of chemotherapy. We all looked forward to the treatment’s being discontinued.
On December 6th Jason stayed home from school with a cold. During the day he seemed to improve so that by evening he was feeling fine. As he was getting ready for bed his nose started bleeding and did not stop easily. He told mc he had two other nosebleeds earlier in the day. This wasn’t very unusual, as Jason did tend to have nosebleeds with colds and congestion, or simply from the house being drier than usual with the heat on. As Jason and I were trying to get the bleeding under control, Wes came in from a meeting. He thought he should take Jason to the emergency room to have his blood counts checked. We phoned the doctor on call and she agreed. By that time it was 10 P.M.
At about 1 A.M. I awoke, surprised to find that Wes and Jason were still not home. Shortly afterward, Wes called to say they were having trouble getting blood as the port-a-cath was not working properly and veins were difficult to access. Knowing they would not be home for quite awhile, I went back to sleep.
Meanwhile, Wes was with Jason and he was the first to learn the shocking news.
The doctor examined Jason and then spoke to Wes: “I’m sorry, Wes, but the leukemia is back and he has between two weeks and two months to live.”
Wes was stunned. After years of chemotherapy, the transplant and medications, was the end to be so sudden? Years before, Wes and Jason had made a promise to each other that Jason would try to bravely face whatever came and Wes, on his part, would be honest with Jason about his condition. Wes went to Jason and said, “Come on, buddy, let’s go home.”
Surprised, Jason asked, “What did they say?”
“Let’s just go,” Wes answered, his voice trembling with emotion.
As they went through the large front doors of Mass General Hospital Wes got down on his knees and said, “Oh, Jason, I love you so much, but your leukemia’s back and it’s all through you. The doctor just said you have only a few weeks or months to live.”

Back in the hospital 

Back in the hospital

He looked at Wes and his first words were, “Dad, this is going to be so hard on Mom.”
They walked to the car in silence. When finally they spoke, Jason wasn’t angry or upset. He was thinking of how God might be able to use his death for a purpose, and he was determined to be the one to tell me the news.
Wes asked, “Jason, are you afraid?”
“No, Dad, I’m not afraid. I’m sorry for the family that this is happening.”
Through tears, Wes told him, “Don’t be sorry for us. Let’s just do what we can, stick together, and see what God can work out of it.” They prayed there at the end of the street and headed for home.
Of course, I knew nothing about this or of the nightmare through which Wes and Jason were passing. At about 3 A.M. I sensed someone in the hallway. I woke up to see Wes and Jason. Their expressions chilled me.
Wes looked at Jason and said, “Are you sure you want to tell her?”
“What?! Tell me what?” Jason came over to my side of the bed and knelt down on the floor. “My leukemia came back and they told me I have between two weeks and three months to live if I don’t get chemotherapy,” he said shakily.
I started to shiver. From head to toe my body shook with a dreadful chill. I hugged him to me, rocking him back and forth.
“Oh, my poor baby!”
It had been many years since I had called him “baby” but I only wanted to take him in my arms and shelter him from all this pain and grief. Wes asked him a little while later if there was anyone he wanted to talk to. Jason thought for a minute and then said he needed to call Jacki and Joey. They had been involved with Jason and his disease since the beginning. So, at 3:30 in the morning they once again received news neither will ever forget.
When we finally went to bed Jason was the only one who slept. Wes and I were in shock. Yes, we had realized this day would probably come, but again we were taken by surprise and unprepared. I remembered having said to a friend just the weekend before that I fully expected to lose Jason one day. We had been talking about her little girl who had died that summer, and my Rebecca. Never did I think that this would come so soon. We are never ready to lose someone we love.
The following day we returned to the hospital for further testing. Jason’s regular doctor was almost as surprised as we were and was not convinced the diagnosis was correct. A bone marrow biopsy and aspiration were done, as well as more blood work. When the doctors looked at the bone marrow they felt very encouraged. It was not full of leukemia as should have been the case. The consensus was that either Jason was fighting off a virus or he had a chronic form of leukemia that many people live with for a long time. Bone marrow samples were sent to other labs for further study.

Lilian Guay 

Lilian Guay

We left Mass General Hospital that day greatly relieved and hopeful. We would come back on Monday for more blood counts. The bad news had traveled fast and now we needed to let everyone know what the doctors had said. The excitement was contagious. Teachers were stopping by the house to hug Jason and to say what a miracle this was and an answer to all the prayers that had been said for Jason. I was cautiously optimistic. I had seen how this enemy called leukemia worked, sneaking up so slowly, then exploding into disaster. I had no doubt that God was able to answer our prayers and heal Jason, but we wanted only His will and were not sure what that will was. If Jason only had a virus why was he so pale? We could only hope for the best and go on from here. TodayJason was with us and we would enjoy that.
Over the next week Jason returned to the hospital several times for more blood work. The lab reports were still inconclusive. We grew more and more concerned as Jason was not feeling better or recovering from this possible “virus.” Finally it was necessary to give him platelets due to his low platelet count and a white count that seemed to be going higher every day. On Monday, December 17th, I took Jason back for more tests and more platelets. I had an increasingly uneasy feeling while waiting to talk to the doctors. All the nurses seemed to avoid my impatient glances in their direction. When, at last, I was called into the office, I did not anticipate good news.
The doctor began, “Well, we are very concerned. This does not appear to be getting better. It is unreasonable to assume that this is a virus or a chronic form of leukemia. Jason appears to be in what we would describe as a blast crisis in AIVIL (acute myelogenous leukemia). His white count is approaching dangerously high numbers and his platelets are being eaten up very rapidly.”
I interrupted to ask what his white count was. When I was told it was nearly 200 thousand I was stunned. It had gone from 49,000 on December 6 to this incredible figure in just 11 days.
The doctor continued, “This does not appear to be a relapse of Acute Lymphocyte Leukemia because the disease seems to be in the transplanted marrow, not in his original marrow. If this had happened earlier there would be reason to question MaryEllen’s health but, after five years, the possibility of the disease’s coming from her is remote. More than likely the three years of chemotherapy are to blame for this new disease.”
As I listened I became less concerned with where it came from and more interested in what we were to do about it. We seemed to go around in circles for a while. There was talk of possible aggressive treatments of chemotherapy and of second transplants. I felt we were skirting the real issue.
I finally spoke up, “Jason is not going to get better. He is going to die.”
The doctor lowered his eyes. “Yes, no matter what we do, we are only putting off the inevitable.”
Monica held my hand and suddenly seemed to be older and defeated. During more than 25 years she had known this defeat over and over again. Jason had been one of the “success” stories.
“We thought we had it licked,” she said softly. “I’m getting too old for this.”
I shared with her that I remembered asking Dr. Truman why he remained in such a field for so long. He had told me that he concentrated on the successes. She said that was true, if only every story had a happy ending. We talked about how long Jason might have. I wanted to pin someone down to a time, but everyone I asked said there was no way to predict. He could have weeks, perhaps months. So much depended on how well he did with whatever medication they could give him.
I told Monica that I did not want Jason to die at home. I could not imagine what that would be like for the other children. She said that was fine, that we could make those choices when the time came. Nonetheless, I realized that I might not have that choice should something happen suddenly.
Jason came into the office and Dr. Ferguson explained to him what was wrong. He asked if Jason had any questions. He didn’t. They talked about chemotherapy. Jason said he would try some drugs but he did not want to be real sick if they were not going to make him better anyway. They seemed to understand each other. We decided to talk more about it later.
The ride home was quiet. Between the two of us there always had been a quiet understanding. We did not need to chatter much. Each of us knew, almost instinctively, what the other felt. I asked him what he was thinking. He sighed and said he was not surprised by what the doctor had said. I had not been either.
“Well it wasn’t the best of news, for sure, and it sounds like it’s probably not going to go away.”
He said, “I know and that’s okay.”
In a few minutes he fell asleep and slept the rest of the way home. My mind was reeling. How do you tell your son that he is not going to get better? Yet, he did not need to be told — he knew.