Childhood Leukemia Story - Jason - 10 - Another Birthday

Jason Story of Child LeukemiaANOTHER BIRTHDAY

With the fever gone, Jason was able to start going out for brief periods of time. The Sunday after Thanksgiving was a perfect day for a walk. We got him up and dressed and were surprised to find that his pants would not go around him. While he was basically thin, his stomach was terribly bloated from prednisone and other drugs he was on. We did the best we could and put his jacket on. He was not too happy about going outside. It was difficult to pull away from such sheltered conditions for the first time.
As we walked through the rose gardens he perked up. It must have felt good to do what the rest of us were doing. He noticed all the different colors in the gardens and watched a fountain spraying. After 30 minutes or so he was ready to go in. He looked exhausted. We learned just how exhausting this trip was, for he slept from 3:00 that afternoon through the night and for most of the next day.
Still, he was making progress and continued coming out on passes for rides and trips to the house. He had to wear a mask constantly at first and then was allowed to take it off at home when just the immediate family was present. Many precautions had to be taken as Jason’s immune system was rebuilding itself and could not fight infection well. He could eat nothing that had been exposed to the environment, which excluded most produce and fresh foods. Everything that he used, like cereal, had to be closed tightly and used only by him. Being a rather fussy eater to begin with, Jason hated this diet. It seemed that everything he craved was off limits to him.
Gradually, we learned to cope with this and get him to eat, but it was very slow. The doctors were trying to get him ready to come home for Christmas but they warned him repeatedly that, if he wasn’t eating, he couldn’t leave. Other than the appetite problem, there were those fevers. Little by little, he was being weaned from antibiotics, yet every time they were stopped Jason got a fever.
There were two other boys his age on the floor. Gary, a smiley, sandy-haired little guy, was in isolation and seemed to be coming along with very little trouble in comparison to Jason. Ryan, an Oriental boy with a sweet, round face framed with dark black hair, was going through radiation and would come and visit Jason in the doorway of the room. Early one morning we walked in to find the two of them camped out in the hallway, on a sheet, playing with their trucks. Jason was wearing a mask but if I shut my eyes I would have thought I was listening to two healthy boys playing in our living room. They were having a lot of fun together. By the time Ryan was ready for isolation Jason had to move again. His bed was needed for a new BMT patient. Since he still could not go home, he went over to pediatrics. He missed the familiar nurses and liked to visit them when he could.
With Christmas just around the corner, and the thought that Jason would soon be home with them, the children were very excited. But when Christmas Eve arrived, Jason had a slight fever. The doctors agreed to let him go home for Christmas day, but he’d have to return for the night so they could check him. On Christmas morning Wes went to pick him up while the rest of the family waited, not so patiently, for them to return. Many friends and family members had sent packages and it wasn’t easy for the children to just sit there gazing at them! Finally, at 10:00 they came in. Needless to say there was a lot of commotion that day! We had numerous phone calls connecting us with special people far away. While we heard reports of snow, ice and freezing temperatures in New England, we played outside in 85 degree weather. Christmas did seem strange in that environment, but I’m sure I could get used to it very easily. It had been a special day — one we hadn’t been sure we would all see together.
By 6:00 P.M. Jason was begging to go back to the hospital. He complained of being tired and of stomach pain. Fortunately, once he got back there, the pain went away. After a quiet night, he was given a thorough examination. His temperature was normal, and the doctors felt that his appetite might increase faster at home. So, on December 26, 1985, Jason walked away from the hospital, free!
I had been taught to inject heparin into his catheter (to prevent clotting) and to clean the hole in his chest. Once I got used to it, it was a very simple procedure. To reduce the risk of infection, he slept in a cot in our room, away from the other children. Of course, he went back for checkups very frequently and his weight, along with many other more intricate things, was monitored. At first we had our doubts about his staying at home because he was not even trying to eat. But we forced him to drink milk shakes and eat every fattening thing we could concoct. After a few weeks our efforts paid off, and he started gaining weight.
He had perked up tremendously in the short time he had been home. He ran and played just like the others. It was wonderful! In the quiet times his little mind never stopped. One day he and I had an interesting chat on the way to a store. He began reminiscing about how the children in kindergarten had made fun of him sometimes. I reaffirmed the fact that they had not known or understood what was wrong with him.
He said, “VVell, I just think it’s like when Jesus said, ‘Father forgive them for they know not what they do.’”
I was shocked! He had absorbed so much in his short life.
Not too many 6-year-olds would consider what Jesus might say. I wondered how many adults would.
As February approached, and Jason continued to improve, we grew restless. California was wonderful, but it was not home. Jason had wanted to be home by his birthday, on the 7th, but as the days went by, that possibility looked more and more unlikely. Bethany had finished her gymnastic class at the YMCA. Bryan was growing tired of the swings, and everything was pointing eastward. Grammy and Grampy left for home, and our friends were all starting to ask when we would be leaving. Checkups were getting farther and farther apart. Finally, the first week in February, we were told we could make travel arrangements. Needless to say, we were all very excited! We scheduled a flight with The Corporate Angels, to leave L.A. on the 13th of February.
Jason was resigned to celebrating his seventh birthday on the West Coast. We had his party at the home of Debbie Perez, one of our new friends. When she learned that we hadn’t tried Mexican food during our stay, she prepared a feast. We stuffed ourselves on enchiladas, tamales, guacamole, refried beans, tortillas, and countless other traditional dishes. It was a thoroughly enjoyable birthday party that ended rather unusually, with a Bible study. Debbie’s friends and neighbors had been coming to her home monthly to discuss the Bible with a friend of hers, Tom Baker, who had been a missionary in El Salvador. We found their questions and interest in God’s Word heart-warming, and at the end of the discussion left for home tired but refreshed.
The next day we had some very disappointing news from the Corporate Angels. The flight on the 13th had been permanently canceled, and we’d have to wait indefinitely for another date. We immediately began checking into commercial flight schedules that would fit with Jason’s final checkup date, not wanting to delay our return home one day longer than we had to.
On Saturday evening we went to Tom and Nelly Baker’s home in Alhambra, another suburb of L.A. Jason had a grand time with their two boys. They skate-boarded up the driveway, ran, jumped and rough-housed to their hearts’ content. While the children were all playing outside, we enjoyed watching slides of El Salvador. We were intrigued with the country’s primitive beauty and many cultural differences. When the evening came to an end, the children were totally exhausted, and we all took happy memories away with us.
Sunday was quite busy. I didn’t give much thought to Jason’s complaints of pains in his side when I considered all the activity of the night before. Was it any wonder something hurt? We took a ride to the Queen Mary in Long Beach. The children were impressed with her size and beauty. Jason seemed to enjoy the day and didn’t say anything else about aches until evening. As he got ready for bed he started to cry. We could hardly touch his side without his moaning in pain. Wes took him to the hospital immediately.

Regrowing hair after chemotherapy 

Regrowing hair after chemotherapy


Before long he called to say that Jason was very upset and wanted me. Lilyane, the woman from whom we rented the house, agreed to watch the children for me and I went over to the hospital. Jason thought he was dying because he had seen the doctors whispering together and feared the worst. They reassured him he was not dying — he had shingles. He was put in the infectious disease wing to protect the rest of the patients. An I.V. for the necessary drugs had to be started. Wouldn’t you know that the Hickman line had been removed just two days earlier! Finding a good vein was no small task and actually became the worst part of this whole incident. Finally, with his ankle at a strange pitch, a vein was located and the necessary connection was made. Jason settled down, the crisis past.
Then the nurses’ station called to say that we were wanted on the phone. It was Lilyane. MaryEllen had not stopped screaming since I’d left. Poor Lilyane was not used to this and was completely frazzled. I told her I would be right there and sped home to find MaryEllen still screaming! As soon as I picked her up she quieted down but sobbed for hours after she fell asleep. Perhaps she thought I had finally gone away for good. Any time I’d left her before she had her Grammy. Just after MaryEllen dozed off, Wes arrived. Lilyane must have sensed the tension we were feeling because she spontaneously asked if she could pray with us. She put her arms around the two of us and just asked the Lord to help us in this situation. It was sweet of her to want so much to do something for us.
The next week was hectic. We truly appreciated all the help Mom had been. With no one there to take her place, Wes and I became like two ships that pass in the night. When he was home, I was at the hospital, and vice-versa. He had to cook and clean up kids, etc. His life took a different course very quickly. There was no mother there to say, “I’ll do it.” I was impressed with the good job he did. Those pork chops he made were much better than mine. However, that rat-race pace was not for me. I felt sorry for families that had to live like that all the time. Meanwhile, Jason was almost enjoying the stay in the hospital this time. Little Gary, his friend from the BMT floor, had shingles too and was in the next room. They sent notes to each other and talked on the phone. Having someone else in the same boat sure helped the time pass quickly for both of them. After only a week, to our tremendous relief, Jason was discharged and we were free to leave California.