Childhood Leukemia Story - Jason - 03 - MaryEllen

Jason Story of Child LeukemiaMARYELLEN
It was encouraging to see Jason looking so well. He was able to run and play like all the other children. He was leading a normal life and experiencing the usual mishaps, too. With the five months behind him he was enjoying summer, just having fun, when he stepped on a rusty nail. He had been riding his tricycle and skidded to a stop right on the nail. The howling could have been heard all over the neighborhood!
As I carried him to the house he shrieked, “Now I’m really going to die!”
Apparently all our well-intentioned warnings — “Please be careful! Don’t take chances! We don’t want you to get an infection!” had made more of an impression than we realized. We soaked his foot and called Boston and his panic passed when he learned that a tetanus shot would make him as good as new Not many weeks later he didn’t notice that his finger was in the car door when he slammed it shut. Once again the neighborhood was filled with howling. This time, however, he knew it wasn’t life-threatening, just painful. Not only had he removed the finger nail, he had broken his finger!
But other than the normal childhood accidents, Jason enjoyed a healthy summer. We visited aunts and uncles in Pennsylvania, went to the beach, had picnics and enjoyed a fun New England summer. When it was over and time for school again we had collected many happy memories.
This school year would be different as Jason would be going to kindergarten every morning rather than having three mornings of nursery school. He was looking forward to it and frequently asked me to read the class list so he could see which children he knew from the previous year. Friends were important to a five-year-old. It meant a lot to know who liked you and whom you liked. Once school started he would come home and decorate the refrigerator with his projects. Bethany usually added hers as she was now in nursery school. Kindergarten was fun and Jason rarely missed a day. The appointments in Boston were once every two weeks now and could easily be scheduled in the afternoon.
He made lots of friends and usually came home happy. However, the medication he was on caused his body to swell and there were days when his feelings were hurt by those who called him names because of his appearance. He would come home very quiet and eventually the truth would come out that some school child had called him “chubby cheeks” or “fatty.” There was no way to protect him from such incidents. These five-year-olds were not always trying to be mean. They didn’t think before they spoke and simply said whatever came into their heads.

MaryEllen Arrives

MaryEllen arrives 


I explained all this to Jason as gently as I could. I suggested he tell the class why he looked like that and he thought that was a good idea. A few days later he came home and said he had talked to the children and they “said they were sorry and were real nice to me.” On the whole, his classmates were very understanding. He was often invited to their homes to play and he loved to educate their parents about leukemia. Many of them didn’t know he had it and couldn’t believe he was so ill because he certainly didn’t act it. I’d frequently hear them remark “how bright” or “how amazing” he was as he told them about his leukemia. Never once did he feel cheated out of a normal childhood or ask why he had to be the one to be sick. Instead, he would talk about God’s having given him this disease because He knew he could handle it and would be able to trust Him. Not too many adults would have that outlook!
Along with enjoying kindergarten, Jason was anxiously awaiting his new brother or sister. Actually he had decided that this baby had to be a girl.
“We already have two boys and a mommy and daddy but only one girl and it won’t be fair to have four boys but only two girls.”
Just when October was ending in a flurry of leaves and neighborhood goblins the score was evened; MaryEllen was born. Dark hair and deep blue eyes, she was beautiful. Everything about her birth was uncomplicated and easy and I felt wonderful. There is something so precious about a new life.
Wes was happy that she was here but was having a hard time coping with a sense of “numbness.” He was proud and thankful for another healthy daughter but something was different this time. Later we realized that he had been expecting a replacement for Jason and this tiny little bundle was not Jason. She was perfect but there was no way to have a “spare” Jason should something happen to the first. When Wes understood all of this the numbness disappeared and he fell in love with this darling little girl God had given us. She was the most content of all our babies, so much so that she almost starved herself. The pressures I was under left me unable to nurse well and at four weeks of age she was a pound under her birth weight. Formula took care of that and she discovered eating wasn’t such a waste of time after all. She was a wonderful blessing for us all to enjoy.
The rest of the school year progressed well. Actually it seemed to fly by. With a new baby, a two-year-old, plus two in school who needed transporting, life was busy. It is difficult to recall events from those months. I must have been too tired to function. Before we knew it we were again thrust into summer with the ending of school in June of 1985.
It had been a good year for Jason. At six he looked no different from any of his healthy friends. Yet something did not seem quite right. He was easily agitated and cross. I complained to my mother that he acted like he was on prednisone even though he wasn’t. He had a visit coming up with Dr. Truman and I wanted to be sure to tell him about it.
A few nights later when I went up to bed I found Jason walking around. When I questioned him he said his leg hurt. He went back to bed with no fuss so I assumed he had a cramp. During the night he came into our room complaining of pain in his chest. This was very strange. He tried to settle down in our bed but ended up again pacing the floor. It was about four A.M. by now. We knew it was too early to call the doctor so we waited until six and then tried to reach Dr. Truman at his home.
He returned the call promptly and said he had been sitting reading. He had awakened early and sensed that a patient was in trouble. He had chosen to read while waiting for the phone to ring. Since I had promised to baby-sit my sister-in-law Faith’s two-year old, Wes would have to go to Boston alone. At the last minute he decided to swing by his parents’ house and his dad went with him. I reassured Faith when she dropped off the baby that everything would probably be fine, and she and her husband left. They had not gone too far when they decided to turn around just in case Jason wasn’t okay. They came back and Faith stayed with me until we had some news.
Finally Wes called to say the doctor thought it might be shingles because he had noticed three or four dots on Jason’s left shoulder. He wanted to do a bone marrow just to eliminate the possibility of a relapse.
“Wes, he doesn’t have shingles!” I blurted out.” He brushed against a thorn bush. Those dots are just the scars left from the scratch.”
A bone marrow! Jason absolutely hated that! I had to get there. Racing down 1-93 towards Boston, desperate to cover those 50 miles, I prayed, “Lord, get me there in time. Jason needs me!” My mind flashed back to a day years before when I had sped along another highway to Boston. It was my father doing the driving. My sister, Mary Ellen, was in the hospital there and we were hurrying to meet a specialist. Suddenly I ached for my father. He had divorced my mother several years before and we rarely kept in touch. If only he were here now. Right out loud, all alone in the car, I begged God to reach him and bring him back. It was probably for selfish reasons that I prayed as I did that day. It would have been so reassuring to have “my Daddy” there making everything all right as he did when I was a little girl. Immediately I realized I was not alone and told my Heavenly Father I was sorry for being so unappreciative of His presence and His desire to strengthen me. With these thoughts I began to calm down as the long ride finally came to an end. Within minutes I was running up the hallway to my son.