Childhood Leukemia Story - Jason - 02 - Realities

Jason Story of Child LeukemiaREALITI ES
November 8th Jason began his chemotherapy. We are thankful for the medicines presently available— not too long ago we would have gone home to watch our son die. Now, by giving a series of different drugs at different times for varied time periods many types of leukemia can be cured. We learned that Jason had Acute Lymphocytic Leukemia (ALL), which is the most common of the childhood leukemias. He was also in the low risk category because it was felt that there had been an early diagnosis and his blood counts could have been much worse. These were good signs and something to be thankful for.
He was put on a three year protocol: the first five months would be intensive chemotherapy, followed by a rigorous maintenance program. It was the doctor’s opinion that everything would
go smoothly for us. Jason’s chances for a complete recovery were estimated at 75%. This was a relief, in a way, because suddenly everything looked a little brighter. It was easier to put him through this treatment if it meant he would get better. Jason had his spinal tap and the fluid was clear, which meant the disease was contained in the bone marrow. This was another good sign. The blood transfusions followed and lasted all day. Then he had his first dose of the drug vincristine. We were given papers explaining what each drug was for and what side effects to expect. Vincristine would cause bone pain and hair loss. That was an idea to get used to — a four year old with no hair. Looking back I laugh at myself for thinking that was such a big thing! Some of the other drugs that he would be given might cause cardiac irregularities, kidney and liver dysfunction, brain damage and severe allergic reactions.
The next few days went fairly smoothly. Jason was feeling happier and looked healthy from the new blood. Where there were once pale, yellowish cheeks, rosy ones returned. The medicine seemed to be doing its job. But by the weekend things were no longer calm. We started to see some of those side effects we had read about. Jason’s mouth was burning and his jaw hurt. He was very constipated and unhappy.
We would learn that there were going to be good days and bad days, and often very bad days; days when he wouldn’t even be able to swallow his saliva because of mouth sores, or to eat because of extended periods of vomiting. This was all new to us. We weren’t sure what to expect. Months of chemotherapy were ahead, for this was just the start of a three-year protocol.
Some days I thought I would never make it if the entire time was to be like the first few weeks. The prednisone made Jason ravenously hungry. He would eat three breakfasts, the first usually in the wee hours of dawn while the rest of us slept. His moods were sometimes black. The slightest thing would send him into orbit. On the other hand, something only mildly funny would trigger fits of uncontrollable laughter. This was difficult to deal with, because I knew this behavior was not his fault. I tried to be patient, but could not just allow him to take advantage of his brother and sister or get whatever he wanted just because he was ill. If the Lord spared him and he did get well then he would be impossible to live with!
There were difficult days at home, and difficult days at the hospital. Jason’s attitude towards chemo was generally fine. He prided himself on being the bravest one there and rarely shed a tear when having intravenous inserted or a bone marrow aspiration or spinal tap. We usually had a very easy time with him and I felt sorry for the mother who had to stand there helplessly and listen to her little one scream. In a manner that would characterize his entire illness, Jason was making this very easy for us by the way he handled it himself. But when veins would not cooperate and repeated sticking was needed, Jason was transformed into a frustrated and irritable little boy.

The day following diagnosis at MGH. 

The day following diagnosis at MGH.

“You can’t do this! You’re never going to get it!” he’d accuse Sue, his ordinarily beloved nurse.
But after the ordeal was over, he’d apologize and hug her, and everything would be fine. These episodes were necessary reminders to Wes and me that he was, after all, just ‘. little boy. He, like all the children we were meeting on our hospital visits, was experiencing something that should not be a part of childhood. Our circumstances were sharpening our senses to the pain others around us lived with. There was always something to make me thankful for my situation as I realized how much others were suffering. There was the family that had a child with both Down Syndrome and leukemia, and the parents whose only child had been stricken. I was constantly discovering someone worse off— and this awareness became such a part of my way of dealing with our situation that my sister-in-law said my motto was “It could be worse.”
There was so much sadness, yet most of the time I hardly thought of being sad. Children would come in with pictures they had colored, or cookies and donuts for the staff Of course there were the little ones who came in crying, continued crying the entire time they were there, and left crying. It was not that the place was particularly sad in itself; it was when we returned home and thought about the day and everyone we had seen that the helpless, aching feelings would come.
We made special friends, though, that we will never forget. The doctors and nurses became extensions of our family. Monica had been Dr. Truman’s nurse for many years. To the children, she was like a grandmother with her loving and tender ways. Sue was a bubbly blond in her early 30’s. She would laugh and joke with the kids and was usually hugging one of them. Dr. Truman was kind and gentle, very distinguished, yet not aloof. He loved his patients and was loved in return. Dr. Ferguson was a new young doctor when we first met. He added a lot to the clinic with his dry wit. He liked to see the bright side of life and helped us do the same.
When Jason began going every day for treatment he met Lauren, a sweet little redhead, who, at eleven, had been coming for three years already and had recently relapsed. Outgoing and friendly, she was quite grown up for her age and Jason was very impressed with her. She told us, in a matter-of-fact tone of voice, that “they” were trying to get her into remission again. This was new to us, as we had yet to reach one remission, and the thought of doing it repeatedly made me shudder. Her parents took everything calmly as well. Lauren was their youngest child and had been born when they were in their forties. At an age in life when parents are enjoying the freedom of grown children, they were spending most of their time at a hospital.
Lauren and Jason helped each other to be brave. They encouraged one another when a spinal tap was painful or a vein was hard to find. It was extremely helpful to have someone who understood how a bone marrow aspiration felt and how certain drugs burned. We parents could only try to help but what did we know about the world of tubes and needles?
The purpose for all the chemotherapy was to reach a remission. This is when the disease lies dormant and does not show up in tests. It could return if the drugs were immediately removed but eventually the patient can be weaned from his medication and, hopefully, the disease does not recur. If Jason could obtain a remission within four weeks everyone would be happy.
At the end of the third week Dr. Truman did another bone marrow aspiration. He was pleased to tell us that Jason was already in remission. ‘We were thrilled! This was better than we had expected and Jason was indeed sailing along. We were concerned about sending him back to nursery school and felt he would be more protected from germs, etc. at home. However, the doctor felt that he needed the normalcy of school and the activity it provided so we decided to send him once he was feeling up to it, maybe after the holidays.
It was during the Christmas break that the most important event in Jason’s life occurred. Jason had always shown a deep interest in spiritual things. He seemed to grasp and understand what many children (and adults) do not. Now that he was so seriously ill this interest only increased. So often he would be the one to remind us that God was in control and would do what was best for us all. We were so thankftil that Jason was learning the Bible as we read it to him and during his regular attendance at Sunday school. At a very young age he knew of his need to accept the Lord Jesus Christ as his Savior. He understood that he had been born a sinner and needed forgiveness and salvation.
On Christmas morning Wes was having a discussion with my thirteen-year-old brother, Peter, about the importance of being saved — having one’s sins forgiven. As they lay on the couch chatting Jason was listening to every word. He was drinking in the simple message of salvation and finally interrupted.
“Daddy, can Iget saved? I’d like to get saved now.”
Wes was surprised, but thrilled. He had not been paying attention to this little guy next to him. Wes quoted Isaiah 53:5-6:
“But He was woundedfor our transgressions, He was bruised for our iniquities, the chastisement of our peace was upon Him and with His stripes we are healed. All we like sheep have gone astray, we have turned every one to his own way and the Lord hath laid on Him the iniquity of us all.”
He continued quoting other scriptures to him. Jason knew most of them by heart. Among them was John 3:16: “For God so loved the world that He gave His only begotten Son, that whosoever believeth in Him should not perish but have everlasting life.”
Jason listened as his Dad told him that the Lord said “Him that cometh to Me I will in no wise cast out.” ‘Wes asked him if he knew what that meant.
Without answering, Jason said, “I’m going to ask Him to save me right now.” He climbed off the couch and knelt beside it there in the basement. He did not speak out loud but got up, eyes shining and said, “Now I know that I’m saved.”
Initially I was doubtful that a child who was so young could understand an issue so momentous. Having been saved at fifteen myself I wondered how this little one, a few months shy of five, had been able to grasp salvation. However, the Lord said in Matthew 18:3, “Except ye be converted, and become as little children, ye shall not enter into the kingdom ofheaven.”Salvation is not complex and adults must become childlike to receive it. As the years unfolded we witnessed a reality and maturity in Jason that we could never have dreamed of that Christmas morning.
When the holidays were over, Jason was feeling so much better that he returned to school. His teachers were delighted with the Jason that returned. He had personality and energy! To my astonishment, they had known him as a shy, quiet and rather disinterested child. Now, thanks to the chemotherapy, his energy level was back to normal and he was alert, involved and outgoing — the way we’d always known him. They were thrilled to discover the real Jason.
Over the next few months, Jason did miss quite a bit of school. But he loved going. School was a welcome change from the world of needles, treatments and disease, and gave him a sense of normalcy.
While he seemed to be doing well, we were forced to realistically face the idea that something could go wrong and we might yet lose him. We were told to get used to the idea of having two children rather than three because this disease was sneaky at best and there were no guarantees. Bethany and Bryan were such a delight to us but the prospect of losing Jason was, nonetheless, hard to contemplate. When, in a short time, we learned that we were going to have another child, we were convinced that this was a blessing from God. This became even more obvious later on. Never had we felt so aware of His hand in our lives and He seemed to give us a sense of quiet strength as things returned more and more to normal, every-day life.
While things progressed for Jason, they regressed for Lauren. Late in the spring we saw her. She came in to chat with Jason while waiting to be examined. She offered us red licorice and very calmly said she had relapsed again. My heart ached for her. The nurses were talking with her mother about bone marrow transplant. I wasn’t sure what this was, exactly, but knew enough to realize that she needed another remission first. That remission never came.
Our next appointments did not coincide, as Jason was not going very often, but on one of his visits Lauren was there. She talked to Jason and hugged the staff as she left. Perhaps she knew she would not be back. The next day we received word that Lauren had died at home. We told Jason very gently and he cried the kind of tears one cries at the loss of a special friend.
He decided death was unfair because “I never saw her for the last time.” Wes explained that he had seen her just the other day.
“But I didn’t know it was the last time,” he cried.
How true! We never know when the last time has come. So, one warm evening in the summer of 1984 we traveled the 80 miles to Lauren’s wake. Jason had insisted on coming, though I wasn’t totally convinced this was such a good idea. His logic was that he needed to say good-bye. The church was crowded and a long line of people stretched from the building through the parking lot. When we reached the door we discovered that the line wound up three flights of stairs as well. As we waited, Jason was nervous but determined. He was ready to deal with this. Before long the casket came into view. We could see it was closed and I was silently grateful for not having to look down into that lively little face now stilled.
As our turn came Lauren’s father spotted Jason, swept him up into his arms and sobbed softly as he hugged him over and over. Her mother was deeply touched that Jason had been so anxious to come. We looked at her schoolmates’ drawings hanging behind the casket and talked about Lauren, whose freckled face smiled at us from a photograph on the coffin. We longed to see her, vibrant and enthusiastic, bouncing into the doctor’s office again, but that would never be. For Lauren, there would be no more needles and no more chemotherapy. We could not wish her back. We visited her home later that night and Jason saw her room and her stuffed animals. in some way this put his young mind at ease. He was unscathed by the experience and would remember Lauren alive and smiling, because that was how he saw her, even this, the very last time.