Childhood Leukemia Story - Jason - 08 - Singing

Jason Story of Child LeukemiaSINGING

The following Tuesday Jason began radiation treatment. He had never experienced this before. It was very interesting to watch the huge, multi-million dollar machine being set up. Being prepared for this machine made Jason look like he was dressing for Halloween. His lungs were traced in black for the placement of lead blocks. This area would not need as powerful a dose and had to be protected.
Dressed only in underpants, he stood on Styrofoam blocks and was held by straps secured to the ceiling. There were pegs for his hands to grasp, as movement was not allowed. For the first treatment special capsules that would measure the radiation were taped here and there all over him. He resembled an Indian in war paint. Radiation did not hurt. There were no apparent side effects after his
first few treatments. Later the vomiting started and his appetite, which had begun to wane, disappeared completely.
Wes and I usually took turns accompanying him, as his treatments were three times a day. On Thursday evening it was my turn. My spirits were drooping and I was beginning to wonder what we were doing there. Jason, however, was in excellent spirits. As we walked to radiation he was telling jokes to the wheelchair attendant.
During the treatment, as I watched him on the monitor, I could see his lips moving. The nurses that were with me in the station outside the radiation room turned up the volume. Above the whir of the machines I heard his little voice singing. I tried to place the song but couldn’t. It was an original Jason song that he made up as he went along. The only lines I could make out were “Jesus is my Savior” and “God is my Friend.” As my tired eyes welled up with tears my spirits were lifted high. It was not I who was having TBI (total body irradiation) yet I was feeling down in the dumps. This desperately ill little guy had once again taught me the value of trusting in the Lord.
Friday marked the end of radiation. By then Jason was itching from dry skin and found it increasingly difficult to stand still. He was very relieved when the last radiation session was over. Saturday was chemotherapy day. While 1500 cc’s of VP16 were pumped through his catheter, Jason slept. The hydrocortisone and benadryl given to avoid an allergic reaction had also made him very sleepy. The only time he woke up was to urinate. This was a task in itself due to the cardiac monitor the nurse was watching. Because he could not get to the bathroom he was forced to use the “bottle.” Mr. Modest had to make sure we all left the room for this. It was quite comical to see him so concerned about his privacy at a time like that.
With twice the lethal dosage of chemotherapy going through his veins, Jason was ready for the new marrow — almost.
On Sunday he was given a pass to go out for dinner with us all.
Barbie Walsh had arrived in California to write about the upcoming operation and she came along. Dinner was not that great. Jason was on a special, low bacteria diet and could not eat the things he wanted. He was glad to go back to the hospital that night.
Although Jason was thousands of miles away from home, the folks in New England were still helping. Literally hundreds of cards had arrived during the week of radiation. Surrounding him on all sides of his room were banners from classrooms in Massachusetts and New Hampshire, as well as letters and cards in all shapes and sizes. The nurses couldn’t believe how popular he was. They had never seen a patient receive so much mail.
As time went by and the steady flow of mail did not abate, more hospital personnel became curious. “Who is this kid getting all this mail?”
One day the lady from the mail room paid Jason a visit. She had to find out why this little boy needed a whole box to himself when usually one would do for an entire floor. There is no proper way to express the gratitude we felt towards all those who kept Jason so very busy opening mail. We all loved the letters that children wrote from schools. Many times we laughed until we cried. When days were otherwise rather long and sad it was wonderful to have the daily mail to look forward to.
Through reporters, Jason sent a message back to the thousands of people who were praying for his recovery. “It’s up to them to trust in God. Even if I die they should believe in Him all the while.
On Monday morning, November 4th, MaryEllen was admitted to The City of Hope. She was in the pediatrics building rather than where Jason was. At 7:30 A.M. on Tuesday she was taken to the operating room. While we waited in the corridor just outside the O.R. we played with her and held her. Mom Vitale had come in to see her before she went in to surgery. When the time came for her to be wheeled away she hardly whimpered. It was a very strange feeling, walking away and leaving our baby there. I would be glad when 10:00 came and she was all finished. Thinking about her being placed under anesthesia while needles extracted precious bone marrow from her tiny hips gave me chills. She was so little! Yet, when it was over, she was fine. At first she cried and thrashed around. She was so hungry that she became angry. Since she had not eaten since the night before — her frustration was understandable. After a bottle of apple juice she fell asleep.
When she awoke she was MaryEllen again, crawling down the hall and as happy as could be. A passerby would never guess she had been in surgery. Oh, there were bandages on her hips to cover more than 30 holes, and bandages on her little feet. One foot had held the I.V. while the other accepted the blood transfusion. Wes had given blood specifically for her on the day before. It would replace the 250 cc’s she lost while giving the marrow. This represented 1/3 of her total bone marrow. After being filtered to remove fat and bone particles, the marrow would be given to Jason through the catheter in his chest. It is amazing to realize that this marrow would find its way to the bones on its own. What a marvelous machine the human body is! Once inside Jason’s bones it would rapidly reproduce to replace his own marrow, which had been obliterated by the radiation and chemotherapy. Another amazing fact was that Jason would then have MaryEllen’s blood type. Although their match was perfect, their blood types were different. His was 0 positive and hers was A positive. A staggering amount of research must have gone into this procedure. When we hear the Leukemia Society discussing the great need for research we now understand what this means. We feel very privileged to have been the recipients of such a tremendous effort.