Childhood Leukemia Story - Jason - 09 - Transplant

Jason Story of Child LeukemiaTRANSPLANT

November 5 was what the calendar read. It was hard to imagine that eight years had gone by since Wes and I were married. That year it was hard to tell it was our anniversary ‘While Wes was up in Jason’s room, I was with MaryEllen in hers. This was the day everything had been pointing to for weeks, even months. By 11:30 A.M. the “cranberry cocktail” (as the nurses call it) was ready. Benadryl was given to Jason and then, as the rich, red drops entered their new home, he slept.
Dad and Wes sat silently by, as if watching magic. Their faces were hidden by masks now, for the risk of infection was growing as Jason’s own marrow died. There would be nothing to fight infection before many more days went by. Even as he slept, the room for isolation was being prepared. He would be moved there later on in the day. As the last marrow ran from the bag above his bed, Jason stirred. He had seen very little of this potentially life-saving procedure. I had not seen it at all, yet it was enough for me to know that it was being done.
Later on I saw my son sitting up in bed and eating popcorn. He certainly wasn’t acting very ill! That evening we gathered Curious George, Pound Puppy and all the other friends and sent them to the sterilizer. They would be back the next day in plastic bags, all ready to go into isolation with Jason. The cars and trucks, MASK vehicles and G.I. Joes would be put on a shelf to wait. All the cards came down, as did the banners and posters. In the morning the room would belong to someone else; Jason was ready to move.

Bethany Marryellen Bryan tested for bone marrow transplant.

Bethany Marryellen Bryan tested for bone marrow transplant. 


With I.V. pole in tow, we took one last walk along the corridor before Jason would be leaving that floor. Although he had been there more than a week, he hadn’t been able to have any contact with the other patients, who were all in various stages of bone marrow transplants. We passed the room of the Chinese boy whose father often sat reading the Bible. Was that a respirator next to his bed? That usually was a sign that things weren’t going well. Then there was the older man who always smiled and waved. He had been there for four months. The next room belonged to Vicki. She had just come out of isolation and had her door closed. We passed the nurses’ station and talked to the ward clerk, Annette, who loved to joke and play with Jason. Almost directly across from the end of the nurses’ station was the room that Jason would call his.
As he looked into the isolation room he shivered. “I’m going to get pretty cold in there.”
“Why? What do you mean?”
“Well, because of all that ice. Isn’t that why they call it an isolation room?”
We laughed, and giving him a hug, assured him there would be no ice and he definitely would not freeze. We kept going down the other side of the ward. There were two more isolation rooms. In one was a man named Jay who had his transplant the week before. He waved as we passed the door. Jason noticed that all his hair was gone.
“Except for the doctors and nurses,” he commented, “I’m the only one with hair on this whole floor.”
There were more friends to wave to and then we were back where we had started — at the door of 3218. The nurses were getting anxious. They wanted Jason in his new room.
We opened the door which led from the hail into the anteroom. This little room would hold all the toys and cards that could not enter isolation. Already the shelves were filled with familiar things. Another door entered the large room that Jason was to occupy. It was a cheery room. The bed came out from one wall and faced a wall mural of mountains and streams. Next to the bed was a comfortable-looking recliner that sloped slightly from plenty of use. Along with lots of space for medical supplies there was a VCR to help fill the many empty hours. Seemingly, every need was supplied here, shut away from the rest of the floor. From the vents in the ceiling came the steady hum of specially filtered air being circulated. Every care had been taken to keep Jason’s immunosuppressive body (non-functioning immune system) free from germs. His blood counts were steadily going down until there was almost no white count at all. It would need to reach 1000 before he could return to a regular room.

Isolation after bone marrow transplant. 

Isolation after bone marrow transplant.

Visiting would be restricted to parents and grandparents only. Strict sterilization procedures were imposed on us. We had to wash our hands with germicidal soap, and wear a gown, mask and bonnet. Nothing could be brought in with us. The door was to be kept closed and entry had to be swift so the door would only be opened for seconds.
After we got him settled into his new room, Jason and I colored some pictures and watched a Disney film. He was getting tired and so was Mommy. Also, I was not especially fond of wandering around the hospital at night, so, a little after nine, I returned to try to get some sleep on the couch in MaryEllen’s room.
During that night Wes received a phone call from Jason.
“Dad, I’m in big trouble now.” He started to cry.
He had diarrhea in bed and was afraid the nurses would be angry. Wes told him to call the nurse and tell her, assuring him that he would be right there, that the nurse would not be upset with him and that everything would be fine. Wes arrived to find the problem taken care of It was after 1:00 A.M. before Wes returned to bed.
On Wednesday, MaryEllen was discharged. What a relief1 It had been difficult with them both in the hospital. Everything should calm down now, or so we thought. How mistaken we were! While it was easier for us with her being home, Jason was starting to look awful. His mouth was raw with sores that ran all the way down his esophagus, making it nearly impossible to speak or even swallow. His lips were so dry that they cracked open and bled. He had a fever and in general felt terrible.
Thursday morning he asked me to help him with his shower. I had a good look at his body and my heart skipped a few beats. Was this Jason? His arms and legs were scrawny, yet his abdomen appeared bloated and swollen. His neck, ankles and private area were dark brown in comparison with the rest of him. This was from the radiation. It had also left his legs looking very blotchy in colors of red and brown. His thinning hair and his poor mouth completed the sorry picture. But that picture faded as he shivered and needed to be dried. He was just as much my son now as he was when he had been an adorable two year old, rosy-cheeked and tow- headed. I must believe that he could look healthy again.
The strong pain medicine he was on became the only thing Jason looked forward to. He lay facing the clock and would start buzzing the nurses’ station when it was getting close to the four hour mark. He was growing weaker all the time and slept a lot. He knew when we were with him but did little while we were there. He tried hard to be cooperative for the doctors and nurses and to be brave, but it was just getting so difficult to cope.
Jason’s body hadn’t started producing platelets yet, so Wes and I began donating them. This process, called platelet pheresis, involves drawing blood from a donor’s arm, removing only the platelets, and feeding the blood back into the donor’s other arm. Tubes running into needles in both forearms connected us to the machine. While the blood passed through the machine, the platelets were spun out of it. Since the procedure took between three and four hours and somewhat weakened us, we’d have it done on alternate days.

It was the ninth of November. A mere four days had passed since the transplant, yet so much had happened. It seemed as if Jason were starting to fall apart. He was bleeding internally. He had developed urinary problems, evident by the blood in his urine. His temperature was 103 degrees, and he was vomiting blood. Cultures were done on blood and urine. Antibiotics were increased as was the pain medication. He only waited three hours between dosages. The I.V. pumps were kept busy with anywhere from four to nine different bottles dripping at once. He was having trouble waking up as he was sleeping so soundly from the medications. It was not uncommon for the bed to be wet because he could not wake up in time. His speech, if he spoke at all, was slurred and often made no sense. Usually he reverted to sign language because that was not so painful.
Gradually, Jason was slipping away from us. The fever often raged over 104. Blood vessels burst beneath his skin, making him look as though he had purple polka-dots. If he sneezed, the room was showered with blood and it was difficult to get his nose to stop bleeding. He knew that his hair was falling out and, rather than having it shaved, he decided to help it along by lying there and pulling it out. That was ghastly! Eventually Wes talked him into having the rest of it shaved because it was getting in his mouth and everywhere else.
Time seemed to be dragging by painfully. We wanted to see some progress or just some hopeful sign, but nothing happened. It was hard to sit idly by, unable to change anything, only waiting. The platelets were being pumped in every day, often to no advantage. My platelets were not causing his blood counts to change at all. Wes’s only worked occasionally, so an anonymous man started to give platelets every other day for him. This was the most effective of all and we were so thankful that this individual was willing to go through the procedure so unselfishly. Later this man came to visit Jason and we were able to thank him, but I must admit our words seemed very inadequate.
In spite of the platelets beginning to help, Jason was feeling no better. The fight was getting harder for him. Everything hurt and was so difficult to endure. One morning as we sat waiting for him to finish in the bathroom I heard,
“Help me! Help me!”
Running to the door and throwing it open I was surprised to find him sitting there as if nothing were wrong.
“What’s wrong? I thought I heard you call for help.”
Looking rather annoyed, he said, “I wasn’t talking to you. I was asking God to help me so this wouldn’t be so hard for me.”
I withered. He knew who to go to when the going got rough. What could I do to help him? He turned to the only One who could help him be strong and fight against such seemingly insurmountable odds.
He was concerned that people might forget to pray for him.
He asked his Grammy on one of her visits, “Do you pray for me?”
“I most certainly do and there are hundreds of others who do, too.”
“Will you pray for me right now?” When she did, with a lump in her throat, he thanked her, patting her hand and saying he felt better.

Rose garden after transplant. 

Rose garden after transplant.

Calls came from home every day. Everyone was anxious for some good news.
“Yes, he still had the fever. No, his blood counts were not any better, his mouth was still sore” and so it went.
By the 15th of November we were preparing ourselves for the fact that this was not going to get better. While we did leave it in God’s hands, we were realistic. Jason’s little body could not keep going much longer. His
body would soon go into toxic shock from having had a fever for almost a week. Aware of his critical situation, he asked Wes, “Dad, am I going to die today?”
“I don’t know, honey. Only the Lord knows that.”
“I was just wondering... I know things are really bad.”
The stress of all this affected us differently. Wes busied himself straightening out the room. He opened the linen closet, refolded all the sheets and towels, tidied up the medicine cart and made Jason’s bed look like Sleeping Beauty’s. There wasn’t a crease or a wrinkle anywhere. This behavior was anything but normal and it made me nervous. My reaction was completely the opposite. I had always had some cross-stitching or other needlework to keep me busy because I found inactivity almost unbearable. Yet on that particular November day I sat watching Jason slowly fading away and did nothing. A pleasant young nurse, Marcy, came by to visit, having been assigned to study Jason’s case as part of her education. She quietly sat beside me and, noticing Wes’s compulsive neatness, told me that was his way of coping. The doctors began coming in more frequently. They said the next few hours would be decisive. We would either see a complete turn around in Jason or..
As we left his room that night we did not know if we would see him in the morning. Our emotions were many and varied. We felt an incredible desire to see Jason well again, coupled with a very tired feeling and a longing for things to change no matter what. Suspended like this between life and death was fraying our nerves.
We prayed fervently that tomorrow would be better and fell asleep totally exhausted.
Wes woke up early and quickly dialed the hospital to see how Jason was. He could not believe what he heard. Incredibly, Jason’s temperature was 93! That was eleven degrees lower than the previous day. We were thrilled. The fever was gone but he seemed much the same, just cooler. He began to hallucinate, speaking of shooting guns and finding dimes and quarters on the sheets between his legs. Even to him, it was very confusing when he would “come to” in the middle of a ridiculous conversation, not having the slightest idea what he had been talking about. In one sense it was comical; yet to think about why he was like that nearly made me cry.
Slowly Jason began to improve. His mouth healed and he could speak with less effort. His urine began to clear and he perked up a bit. Little by little he was coming back. By November 19th, the door of his room could be opened. His blood counts had risen high enough to let him out of isolation. We were surprised because we had assumed that by the time the door was opened he would be feeling much better. However, at least he was making some progress. Two days later he tried to eat something. He had not had a bite of food since he had started radiation almost a month before. French toast was the first thing he ate and the one or two bites he took could hardly be called eating. He said it tasted like cardboard and pushed it away. We had to remember that his taste buds were not functioning since they had not been used in such a long time. There wasn’t much point in eating if he couldn’t tell what he had in his mouth.
On November 23 Jason left isolation completely. He moved to a regular room that he referred to as “Jay’s old room” because Jay had been in it before his transplant. Once he made the move he must have felt better because he decided to eat. His first meal of any substance was a bowl of ”Cap’n Crunch” cereal.
I was amazed that he would choose cereal after having had such a sore mouth. However, with only a few grimaces of pain, he finished it all.
With Jason coming along — finally — we started to prepare for Thanksgiving. Dr. Krance said if Jason felt up to it we could take him out for a few hours on the holiday. That sounded too good to be true. Actually, it turned out to be just that, for the day before Thanksgiving Jason developed a fever. On Thanksgiving day his fever was 103 and Jason spent the holiday in the hospital. Strange as it may seem, he did not mind being there. It had become home to him and offered security The people there could take care of him better than I. As for the rest of us, we all had a normal Thanksgiving dinner. The children had a great time with Indian head bands and Pilgrim hats that Grammy made.
Later on we all went to visit Jason. The policy was that all visitors wear masks but since MaryEllen would not keep hers on we made Jason wear one too. Bethany, Bryan and MaryEllen really loved that visit with Jason. They told him about everything they could think of, smiling constantly and asking how he was and “What was this for?” and, “What does the nurse do with that?” It was a nice break for Jason as well, since it gave him something else to think about. As we left the hospital that Thanksgiving night, we were truly thankful for so many things. While the future was at best uncertain, we had seen God’s hand in so many ways and felt such strength from above that we were profoundly grateful.
During the next few days we noticed changes in the condition of Toni, the patient in the room next to Jason. We had spoken with her at the brunch the nurses held before Thanksgiving. She had brought her husband and two little girls with her, although she herself was unable to eat because of all the bacterial precautions. She had talked about possibly going home right after the holiday and of feeling wonderful. But since Thanksgiving we hadn’t seen her leave her room. Her husband looked somber, rather than happy. Then we saw the respirator being moved into her room and knew she was in trouble.
We learned she had pneumonia and would not be going home — ever. Within the next few days Toni slipped away from us. With her mother kneeling beside her and her husband standing helplessly by, she died. It was very sad. How do you get up and walk away from a situation like that?
I wanted to do something but could only say, “I’m so sorry.”
In this place where death was not uncommon, life went on as usual.
Her room was occupied again, this time by a 21- year- old boy who had had a transplant the year before. His leukemia had returned and he was planning to undergo another transplant. This was hard for us to comprehend, having seen what just one was like. We waved to him when we passed his room and then thought we saw him walking in the halls. Finally we realized that he had an identical twin. We never got to know him well for, before long, his door was closed. One night there was crying and yelling coming from the room. It sounded awful. Then I heard a nurse talking about renal failure. The next day he passed away. There would be no second chance. These sad incidents made us so thankful that we still had Jason, yet they made us realize that we should treasure each moment because there were no guarantees.