Childhood Leukemia Story - Jason - 16 - Letting Go

Jason Story of Child LeukemiaLETTING GO

New Year’s day found Jason enjoying time with his good friends Eric, Dustin and Sean. They were able to race cars, play games and just have fun with each other. However, Jason’s nose bled a lot and he was showing signs of weakness. The following day he was readmitted to the hospital after a reaction to platelets resulted in a high fever. We had lengthy discussions with the doctors as to what course of treatment to pursue. The transplant team at City of Hope was willing to try a second transplant if Jason’s condition stabilized. Everything seemed to be very “iffy” at best. We decided to consult Jason himself. As soon as we mentioned a second transplant he began to shake his head. Personally, I did not blame him. When we had watched him suffer so intensely I had silently vowed never to put him through that again. Wes, too, understood that medical science could only go so far. Ultimately, Jason was still in the Lord’s hands. It seemed to us both that we had reached the end. Wes told the doctors that we would do what Jason wanted.
“We don’t believe that quality of life is measured in quantity of days,” Wes told them. They understood and agreed that Jason’s opinion was most important. Jason was only eleven years old, yet he was capable of
this critical decision.
“No,” he said softly, lying back on the pillow, “I don’t want another transplant. I’ll try some chemotherapy if it won’t make me real sick. I just know I won’t live through another transplant. I don’t want to go through that for nothing.”
“Jason,” the doctor explained, “You don’t have to decide that now. We need to try some medicine first to see if we can get that white count down some.”
Jason had been given so many drugs over the years that few were left untried. Over the next few days he received doses of a new chemotherapy. As the deep blue medicine would slowly course into a vein in his hand I’d sit wondering what this poison would do to my son. He’d wince every now and then, complaining that the drug stung his arm. He missed his port-a-cath, which had recently been removed.
The days passed. Jason was disappointed that he was still in the hospital when his Uncle Pete arrived for a week’s visit on the 10th. But four days later Jason came home. Delighted to be free while Pete was still around, Jason lost no time in dragging him off to MVP Sports for the all-important purchase of a knife to add to his collection. So when David and Melody Oliver arrived that afternoon from Philadelphia, expecting to find Jason lying on the couch, they weren’t at all disappointed to have to wait for him to return from shopping. The excitement was short-lived, however, for the next day he was readmitted, following a particularly violent reaction to platelets. The effects of the chemotherapy were beginning to appear as well. His white count had plummeted to 400. Exhausted from the medication given to reduce the reaction and with his temperature soaring, Jason seemed to be wearing out from all the ups and downs he was experiencing. We felt it was so unfair that he should have to go through so much but he did not complain or bemoan his condition. The calmness he maintained was nothing short of miraculous.

Jason Vitale

Jason Vitale 

One night, when he was having a particularly violent reaction to the platelets, a nurse was sent racing to the emergency room for medication. Wes stood on Jason’s left, holding his hand, and Dr. Ferguson stood on his right.
Jason turned his head away from them, over his shoulder, toward the window, and whispered, “Help me, help me!”
Dr. Ferguson said, “Jason, I am trying to help you.”
Jason looked up at him and said, “I wasn’t asking for your help. I was asking for God’s help.”
Over the next several days Jason appeared to be slipping. His nose was constantly bleeding; his lips cracked and bled, making speaking and eating impossible. Both eyes became infected, requiring greasy ointment, which made his appearance all the more depressing. He wanted to come home but some new symptom would develop, making that impossible. Finally, on January 19th, Jason was discharged.

Pennsylvania with Ronnie 

Pennsylvania with Ronnie

The next day Pete was to return to Pittsburgh. As he packed, I became aware of whispering and suspicious glances in my direction. When at last I was let in on the goings-on I was shocked. Jason was trying to convince Peter to take him to Pittsburgh with him. He could not be serious! This desperately ill child was thinking of travelling 600 miles. Quite a discussion followed. The reason Jason wanted to go to Pennslyvania was to talk to his friend Ronnie about salvation. Jason and Ronnie had been long distance friends ever since they could remember. As Jason thought about dying, it bothered him to think that Ronnie did not share his assurance of heaven.
“Dad, I really want to talk to him one more time.”
While we hated the thought of Jason going away I had to understand and respect his wishes.
Finally we decided to call the doctor and go with his decision. Wes put in a call to the answering service. Within seconds the phone rang.
“Hello,” Wes answered. “Oh, hello, Tom. It’s funny you should call now. We were just waiting for the Doctor to return our He went on to explain what we were waiting to find out and why. In minutes he hung up and returned to the living room shaking his head. Apparently Uncle Tom, in Pittsburgh, had been thinking along the same lines and wanted to fly Jason there or come to Boston himself this couldn’t be a coincidence.
Jason smiled and said, “See, the Lord heard me!”
When the doctor called he agreed the decision was Jason’s. The worst that could happen was that he would die. Death was coming eventually, wasn’t it? As nervous as I was about this whole issue I backed off and let Jason decide what he wanted to do.
“If I go there I can see more people than if they come here, so I think I should go. I know you don’t want me to leave but I think that if God can get me there in such an amazing way He’ll bring me back too.” Then he asked, “Do you want to come with me, instead of Daddy?”
After thinking it over I decided not to go. Sarah was only six months old and still nursing. I felt it would be impossible to leave her and knew I was not capable of managing a baby and a critically ill child on a plane. Wes and Jason left the following morning, while it was still dark. As I helped him dress I noticed the changes this disease called leukemia had made in my son. He was so thin and pale. Nearly twelve years old now he looked more like an elderly man. As I crawled back into bed I prayed that God would allow me to see him again the following afternoon.
The next day, we watched for the familiar car to come up the road. The flight had been delayed due to bad weather and I had grown more anxious with each passing hour. Finally they were coming!
Then Jason was in my arms, smiling and saying, “See, Mom, I told you God would bring me home!”
As weak as he was, he was thrilled he had been able to make the trip. It was worth all the anxiety on our part, just to see his happiness. Jason lay on the couch and said he planned to stay there. As ‘vVes and I discussed the trip later I was again very thankful to the Lord for bringing my little boy home to me. I did not realize how worried Wes had been that Jason would not make it home. For the hour or so before their flight home, Jason had been blacking out and feeling tremendously weak. Jason, not at all fearful, had leaned back in his seat on the plane, smiling. He had accomplished what he felt God had wanted him to do. He had been able to talk to Ronnie and say his good-byes.
“Dad, I’m really ready to go now.”
Wes knew he needed platelets badly but there was no way to get them, and he just prayed that Jason would make it home.
The very next day Jason was due at Mass General Hospital for the usual platelets. I dressed to take him and was encouraging him to get ready when he appeared in the doorway of our room.
“Mom, I’m not going to the hospital today.” I turned around, surprised.
“Okay,” I finally said. “Maybe you will feel like it tomorrow.
“Mom, I’m not going tomorrow either. I don’t want any more platelets because they aren’t doing any good. I get sicker and sicker every time and then I have to stay there.”
I took a deep breath. Was this happening? I wanted to argue, “No, we have to go. The doctors want us to come. This is what we’re supposed to do,” but I could not. Jason was right. We were fooling ourselves if we believed he was improving or stabilizing towards another transplant. It was not going to happen. We had witnessed the slow defeat of other children too often to mistake what was happening to our son. Jason was dying and there was nothing we could do to stop it from happening.

Last photo - Jon Procopio 

Last photo - Jon Procopio

How I hated this realization. This was not supposed to happen! We grow up expecting to lose grandparents and, perhaps, our parents on some far away day. But this was my little boy. I had given birth to him, held him, loved him unreservedly. While we had lived for seven years with the possibility of losing him, the sense of helplessness I was feeling at that moment was overwhelming.
I called the hospital and spoke with Monica. She assured mc that Jason’s decision was very adult and perfectly acceptable. She advised us to accept the aid of a visiting nurse. She also explained to me some of the things we might expect. I asked her how long Jason had. Again no one could say for certain. It could be a few days if he experienced internal head bleeding. Then again, he might last for several weeks.
Later that day, Laurie, a visiting nurse, stopped by. She explained to us that Jason would probably sleep more and more until he died. We were to call her and she would take care of everything. We wouldn’t need to contact the police or emergency crews, but she suggested we contact the funeral home soon.
Once more we found ourselves in the office of the young funeral director who had endeared himself to us by his handling of Rebecca’s funeral. We were impressed by the care and sympathy he had shown. He was obviously upset as we discussed plans. He remembered Jason as the doorman at Rebecca’s funeral; it seemed incomprehensible to him that we were there to make arrangements for Jason’s. We decided it would be best to have both the viewing and the funeral at the Walnut St. Gospel Hall.
As we prepared to leave he said, “I hope I don’t hear from you for a long time.”
Our house was constantly filled with friends and relatives. Jason loved visiting with everyone. Each afternoon the teachers came from the Oaklandvale School, the one our children attend. Neighbors and friends brought Jason cards, toys and homemade cookies. It was a bit overwhelming to be the objects of such loving support. Whatever we needed was there before we had time to think about it.
Jon Procopio had arrived from Labrador, where he preaches the gospel. He knew Jason was losing ground rapidly and wanted to spend some time with him before he died. Jason was thrilled to have him around. We cannot imagine what we would have done without him. Jon was there for Jason to talk to. He provided an extra pair of hands to hold a glass of water, fix a blanket, or help one of the other children. Just knowing he was around made us feel better. Thinking of the 2000 miles he had traveled, and of his wife and family braving the wild weather of the North without him made us even more appreciative.
Wes was unable to work. It had become increasingly difficult for him to fulfill his responsibilities and at the same time run to Jason’s aid when necessary. His boss is a wonderful man who could not have been more understanding or helpful. The children continued to go to school each day but, other than that, all sense of routine and organization was gone.
Jason was taking morphine in small amounts. He had begun to get restless and complain of pain in his legs. He was steadily weakening but was not in excruciating pain or suffering terribly. He enjoyed all the company he had and would constantly think of things to do to involve everyone. Some days he wanted to play a game. One day he decided we were going to build Legos. He had enjoyed many hours of constructing with Legos in the long hospital stay in California. This particular day he decided he wanted a new set. Wes and Jon scoured the town in search of “Eldorado Fortress.” He was so concerned they get the right thing that he got up and searched for the book that showed it. We smiled as he scurried around. He was indeed a child after all. For days he had lain there so ill and then, for the sake of a toy.... He lit up as they returned with the precious box. Then he lay on the couch giving instructions as I assembled it with help from the children and those who dropped by.
Because Jason refused to go upstairs to bed, Wes started camping out in the living room. We were afraid to leave him. One night, however he decided to sleep in the girls’ bedroom when they were away. Early in the morning Wes went into the room. “Okay, I’ll see you. Thanks for coming” Jason said. Wes asked what he meant.
“Oh I was just saying good-bye to Dan’s wife.”
“Jason, she wasn’t here.”
“I know, Dad, but I see people in my head. When I die if any one says they are sorry they didn’t come to see me, tell them “That’s okay. I saw them anyway.”
Wes’s mouth dropped. They lay there hugging quietly. Wes broke the silence, “You know, Jason, when you die I won’t just be losing a son, I’ll be losing my best friend.”
“Yes, Jason.”
“Are you afraid of waking one morning and finding me dead?”
Wes gulped, “Well, you don’t beat around the bush. Yes, I guess I am.
“Dad, I’ll tell you what. If I think I know when it’s going to happen I’ll try to give you a sign.”
“Okay, Bud, I love you.”
In the wee hours of January 29th Wes woke me up. “You should come downstairs. Jason’s acting strange.”
Hurriedly, I followed him to where Jason was. We gave him a big drink of water and some medicine. He seemed to settle down so I kissed him good night and went back to bed. Several hours later I went downstairs to find him still asleep. Wes got up, the children went off to school, I bathed and dressed Sarah, and still Jason slept. We were not too worried, since he had been up so much during the night and was probably tired. Eventually he stirred and acted a bit confused. Was he thirsty? As the glass was held to his lips, his head rolled back. He was unable to hold it up. The water ran out of his mouth and he was asleep again. We all looked at each other rather blankly. This was not a bad dream; we were losing Jason. For most of the day he continued to sleep. People came and went throughout the afternoon. Occasionally he roused himself enough to acknowledge a visitor, but most of the time they would speak to him, not knowing whether he heard them or not. It was very touching to watch friends kneeling beside the couch, speaking softly in his ear. I chose to believe that he heard every word. After all, he heard his dad crying as Wes sat looking at him on the couch.
He asked softly, “Who is crying?”
Wes crept to his side and hugged him.
Jason placed his hand on his father’s head and said, “Don’t cry for me.”
He fell back to sleep. A short while later Jason pointed to the ceiling. At first we all thought he wanted to interrupt the conversation that was going on nearby. However, he never tried to say a word. The sign! He had promised Wes he would try to sign if when the end was near. That must have been what he was trying to tell us. Did he think he was dying?
That evening was the prayer meeting night at the Walnut Street Gospel Hall. Instead of going, Joey and Jon Procopio came to sit with us. Wes and I decided to sleep in shifts. He went to bed with the children. When I went up at midnight he arose. Jason was still sleeping. I found it hard to relax and went back downstairs. For two hours I sat watching Jason as he peacefully slept. Every now and then one of us would check his pulse. We noticed his feet and legs were very cold. The others kept telling me to return to bed. I finally decided to listen to them. Before I left I laid my head next to Jason’s. After a minute or two I stood up and started to leave.
JJason Vitaleason turned his head and asked, ‘What happened?”
His eyes were wide, almost as though he were forcing them to remain open. He mumbled a few words that we could not understand, then said clearly, “Tell her I saw the Lord.”
That was a message for Grammy Vitale. A few days earlier Jason had heard her singing “Face to Face with Christ My Savior.” Shortly after that he began to wave his arms around. It frightened us, as we thought he was struggling to breathe.
Jon looked at him intently. “I think he wants to hug you” he said.
Quickly I moved to sit on the edge of the couch and leaned over him. Jason reached his arms up around my neck and squeezed. He then pulled back slightly, put one hand to his face and pinched his cheeks together to enable his mouth to form a kiss. He repeated the process, meaning it for Wes, but could not quite reach him. He seemed to drift back into unconsciousness and then said,
“Life’s tough.”
Joe replied, “Life’s tough but heaven is better, right, Jay?”
With the slightest hint of a smile, he answered, “Uh-huh.”
Gradually, his breathing slowed and his pulse faded.
“He’s going now,” Jon said. Speaking softly to Jason, telling him he’d awaken in heaven, Jon put his hand on Jason’s neck, feeling the weak throb subside.
Jason was gone.
Now I could hug him and not worry about hurting him. Holding him to me, I sobbed my good-bye. Wes saw instantly that all that had been Jason, all that he loved about him was actually gone, transported to another world. Jason’s body lay there peacefully but the real Jason, his soul, was in heaven. It was over. Life with its pain and sorrow had ended for Jason. While we were looking at him with sadness, his spirit was entering the magnificent splendor of heaven. We knew he was perfectly at home there. Suddenly it seemed so right that he should be with the Lord he loved so dearly.