Childhood Leukemia Story - Jason - 05 - Help

Jason Story of Child LeukemiaHELP

Jason was an outgoing child. People were attracted to his calm acceptance of a life-threatening illness and were intrigued by his trust in God. He knew what he was facing to some degree but much of it was difficult for us to explain since we as well were unsure what it would be like. He talked to everyone, though, about his feelings.
To Bethany he said, “It’s okay if God wants me to die now.”
They discussed heaven and the streets of gold. Bethany wasn’t sure if she really believed that heaven had such streets, but Jason convinced her that if the Bible said so, it was true. They spoke of the ones they knew that were in heaven. Jason said he would see his great grandparents as well as Connie, Uncle Pat and Carl. These dear friends had died recently and it was easy for him to relate to their being in heaven because he remembered them alive.
Death was not discussed with fear, though lumps rose in our throats. It all was very simple to Jason. He told Barbie, the reporter, that he was not afraid of dying.
“I don’t worry about it. I pretend I am a normal person. I pretend I’m just fine, that I don’t have a disease. And nobody would ever know except for the holes in me.”
Those holes were from chemotherapy that he was getting three days a week. He told of being brave and not crying when getting his shots. He was anxious to get it over with because he felt that I was upset and never really happy anymore. He worried about his brother and sisters having to be tested as possible donors. He wondered whether we would forget him if he died. That he was only six while dealing with all of this amazes me even now.
While we were groping for answers to his questions and trying to carry on as usual, the fund for his operation was growing. Local folks were planning fund-raisers in the form of Fun Days at the Downtown Park, balloon rides, bowl-a-thons, walk-a-thons, etc. We were amazed that everyone would care so much. Certainly it is easy to feel sorry for a family in a crisis, but these people were running errands, selling T-shirts, playing Superman, turning green to become the Hulk in a dunk tank, and painting dozens of faces with hearts and balloons. The list goes on and on. The K-Mart Corporation became interested in helping raise money in early August. This became a huge effort in its stores throughout the area and would eventually result in over $37,000.00 being raised for Jason’s benefit. It was an awesome task and the effort put forth on our account was most touching.
We were seeing a side of people that many will never see. Some reporters said that our story was popular partially for this reason. In a world where no one seems trustworthy, crimes are committed around the clock, and evil abounds, we saw people giving freely of their time and money to help a six-year-old many of them would never meet. It was also our privilege, by way of the media, to tell thousands that our strength came from above and that we firmly believed God would do what was best for us all. There were times when much of what we said was never printed. Apparently faith in a living God and reliance on His will are not popular topics and don’t sell papers. We answered the questions they asked and tried to keep our household running smoothly as meals were interrupted and routine in general was turned into chaos.
While every effort was being made to raise money we were running into problems with the State of New Hampshire. The Federal Government had promised to match state funds, but in fact, we would never receive a dime from either Washington or New Hampshire. When we applied to the state for medical aid we were refused because we provided Jason a stable home life. If one parent were absent from the home or one parent were unable to provide support or care, the story would have been different. But there was no aid available for happily married couples. We were horrified! It seemed so incredible that this was the reasoning behind the refusal! The media shared our sense of outrage. Papers carried the headline “STATE SAYS ITS RULES FORBID HELPING BOY” and accounts of New Hampshire’s position began appearing. The clamor increased as the public became aware of the situation. There’s no doubt in my mind that God’s grace to us increased as well. What other reason can I give for my ability to courteously thank the women who called telling me to divorce Wes and set up a separate residence? How ridiculous! Patience with such advice would certainly not have been my natural reaction! Such well-meaning people thought they were helping and I treated them as if they were, but divorce? That was unthinkable!
As that August of 1985 began, Jason was once again in remission. It had taken exactly a month. We were so relieved, because everything else hinged on this! Next, we needed to find a donor. This was to be a sibling, and even with three to choose from, the chances, statistically, were not great. But I had a feeling that the baby, MaryEllen, would be the one. The events surrounding her birth had seemed to mean something, and this could be the answer.
One afternoon in early August we all went to have blood drawn at Mass General. This identification procedure is known as human lymphocyte antigen typing, or HLA. The little ones were nervous as technicians drew 20 cc’s from their arms (30 cc’s equals about 1 ounce). The baby gave 15 cc’s and Wes, Jason and myself, 75 cc’s. These tubes seemed enormous to Jason as he was used to much smaller amounts of blood being taken. It was a long day and seemed to take more out of me than usual. I was glad when it ended and hoped no more blood would be needed from the children.
Everything was getting so hectic. Some days I could have used an answering service, as calls were constantly coming. I usually managed to keep a level head and do what had to be done. There was no longer any such thing as a routine at our house. Wash got done late at night, when no one had anything left in their closets. Clutter collected in places that usually were neat. Ironing was done only in emergency situations. Most of the days were spent in Boston or interrupted by reporters and phone calls. One particular evening we had a visit scheduled from a cable TV channel wanting some footage on Jason. They were due at six, which meant the children would have to be fed early. Just as I was getting their meal ready a call came from a Catholic priest who wished to tell me about the powers of this “sister” he knew. He was genuinely concerned, no doubt, and I was trying to be kind, explaining my beliefs while at the same time being pressured by the relentless ticking of the clock. Needless to say, when the television crew came down the driveway, we were not ready.
The children were still eating and Wes was just getting home, full of questions as to why there was such disorganization. Eventually we were “ready” and as we came out on the front lawn the cameras began to roll. But while Wes and I were talking to the anchorman I could hear Bryan and MaryEllen crying in the house. All this confusion was not the children’s fault, yet they were suffering for it. I felt like I was ready to explode!
“I’m sorry but I just can’t do this,” I blurted, and dashed inside.
‘Wes was taken aback to say the least, but, after the crew had left and he’d heard about the way things had gone he was a little more understanding. It had not been a good day! Surprisingly enough, we heard later that the taping was a success. ‘We never did get to see it and, in a way, I was glad.
On the 12th of August we got the results of the HLA typing for Jason’s donor. Success! We were elated — and my instinctive feelings had been right! Little MaryEllen would be the one to try to save her big brother’s life. She was a perfect match, and neither of the others were even close. Jason had been worried about not finding a match, and this set his mind at ease.
I have my donor! I m perfectly fine now! Jason informed a reporter. “I’m glad my sister’s going to give me the bone marrow. Now I know somebody will be able to help me and I don’t have to worry anymore. She’ll be asleep when they take it from her so she probably won’t even feel it and that’s good.”
In the midst of all this excitement, we were anticipating seeing Walt Disney World. Jason had been granted a special wish by the High Hopes Wish Foundation, a wonderful organization dedicated to fulfilling the wishes of terminally ill children. We left on August 16th, after a bit of uncertainty as to whether we’d be leaving at all! Our flight was at 10:55 A.M. and we’d had to be at Mass General at 8:00 that morning for Jason to have a two-hour blood transfusion.
We raced through the Callahan Tunnel to Logan Airport with only minutes to spare, relieved to discover when we arrived that the flight was delayed. This gave us time to catch our breath before boarding. Finally, after a relaxing, enjoyable flight, we reached the condo that had been provided for us. It was lovely and we were glad to be there. Being so far from home without Wes was strange, but business responsibilities had made the trip impossible for him. Mom Vitale came instead, and was a tremendous help, as usual.
The children enjoyed the Magic Kingdom even in the merciless temperature. Jason, on prednisone, was very grouchy, but I think he enjoyed himself anyway. Watching him race along the mini Grand Prix raceway with his grandmother, I couldn’t help but think that the next time our family visited Florida Jason might be in heaven. These thoughts were not predominant, yet every so often, when least expected, they would crowd in. This was reality. To push them aside would be to close my eyes to what was a distinct possibility. I knew God was able and I wanted to trust Him no matter what happened! As we prepared to leave Epcot Center for the airport we were caught in a torrential downpour. We were soaked. The children laughed until they could laugh no more. To them, seeing Mommy and Grammy looking like drowned rats was much funnier than the Country Bear Jamboree!
When we arrived home, Jason and MaryEllen were called in for more tests. Their white cells were fighting. Perhaps this wasn’t going to work after all! It was like being on a see-saw. Up, down, up, down, up, up. It turned out to be just a fluke. Their match was indeed a good one and MaryEllen was still the donor. We heard from Washington again and were told that as far as New Hampshire’s paying was concerned things looked pretty bleak. Still, they insisted there was nothing to worry about; something would open up. Publicity continued and the pace of our schedule picked up even more. We were in a race with this disease. What if there were another relapse before we found a hospital? No, God would work it out. We felt confident about that.
With such a pace it was difficult to accomplish everything.
Simple things like showers had to be squeezed in. One Monday morning I had to get in the shower and get my hair washed. The children were downstairs. I checked on them and told Jason and Bethany to stay in the basement where they were playing. Bryan was entertaining MaryEllen as she sat in the walker in the living room. They would be fine for the few minutes while I was in the shower.
In the middle of my shampoo I heard an awful crash. I jumped out, grabbed a towel and ran. MaryEllen was still in the walker — at the bottom of the cellar stairs. Blood poured from her mouth. Looking down I found one of her teeth on the floor. Running upstairs with her in my arms and my towel in her mouth, I dialed the dentist. As I was talking quite hysterically I noticed the three holes that had once held her three teeth. She had lost them all! I was put in touch with an oral surgeon and made an appointment. Next I dialed Faith, for no particular reason other than panic.
She asked, “What’s so funny?”
I said, “I’m not laughing, I’m crying!” Poor Faith. She pictured my finding Jason in bed not breathing. I explained what had
happened and she came right over.
While we waited for her, Bryan hugged my leg and said,
“Don’t worry Mommy, we can get a new one with teeth.”
I didn’t want a new one, I wanted to go back in time and decide against the shower. The visit with the oral surgeon showed her gums were clean but the teeth could not be replaced. He tried to console us with the prediction that, by the time she was six, we would never know anything had happened, but this was small comfort. I still felt terrible. Poor MaryEllen!
With MaryEllen scheduled to be the donor, the need to find a hospital for the operation to take place became even more urgent. Publicity increased with the state’s inability to help and it seemed as if the whole area was in an uproar. Perhaps it was the irate citizens that spurred the New Hampshire state government into action. This sick child was bad P.R.!
One evening we were visited by Susan Lombard, a woman from the Office of Human Services. She was a very sweet person who was genuinely interested in helping our Jason. When she understood the whole story she promised to assist in some way, somehow. Back in her office she started a search for a hospital that would have a sympathetic view of this complicated mess.
Meanwhile, others had been touched by Jason’s plight. Donations and fund-raising continued as the fund reached 5O,OOO.OO.
This was wonderful, yet it still fell far short of what was required.
Then, one morning after breakfast, the phone rang. The caller asked if I were Martha Vitale and if I had a son, Jason, who needed an operation. He went on to say that he was prepared to pay for the transplant. He knew about the cost and said he would do whatever it took to see that Jason had a chance to live a normal life. The blessings he had been blessed with were many, he said. There was no need to retire and take it easy at his age so he wanted to use what he had to help those who were less fortunate than he. The memory of an eight-year-old daughter who had died from cancer had not disappeared from his mind. Why shouldn’t he try to help spare another family such a loss? I was in shock as I took his name and phone number. He asked that Wes reach him later on. After all our frustration with governmental red tape, this certainly gave us a glimmer of hope once again. Was this God’s answer for our crisis?
Later in the week we met this dear man, his wife and two of their sons. They were the kind of people that made us feel at ease, as though they had always been our friends. In the long months that lay ahead, the sincerity of this offer would be demonstrated time and again. Very soon after their visit we received another call from Susan. She had located a hospital in California that was most interested in Jason’s case. It was the City of Hope National Medical Center, located in Duarte, California. Its approach to catastrophic illness is unique. The medical staff there believes there is no benefit to healing the body if in so doing the soul is destroyed. Money is not an object. If an operation cannot be afforded it is performed anyway.
They wanted us to contact them, and we wasted no time in doing that. Yes, they would do Jason’s bone marrow transplant! With close communication between the physicians there and Dr. Truman here in Boston, Jason’s condition was monitored and a date in October was discussed. It was so difficult to be patient. Time was passing, with a relapse threatening every day.
While we were waiting for a definite date, Jason returned to school. He seemed to enjoy being in the first grade. His teacher was a mother of seven, and a lovely, understanding woman. When Jason grew tired, she let him rest. When he was cross, she understood. It was a blessing that he had school to go to, as it made the time pass quickly and offered a much needed diversion from anxiety about the upcoming operation.
“I try to be brave but sometimes I can’t,” Jason said. “It’s getting closer and closer and the worry pushes up to my head and messes it up.”

Leaving for California 

Leaving for California


In mid-September we learned definitely that Jason’s operation was scheduled. We had to be in California by October 22nd for an October 23rd admission. Now it was time to start packing and to tie up loose ends in N. H. We found a friend to live in the house while we were gone. The schools were told that Jason and Bethany would be leaving. Last minute physicals were scheduled and all other matters attended to. Three to five months would be a long time away from home, yet we had been waiting for this for four months and were anxious to get moving.
We were put in touch with The Corporate Angels, a group of private planes that will transport cancer victims and their families if they are going where the patient and his family needs to go. The timing was perfect and we were connected with a very kind pilot who was more than happy to take us to California on October 19th. What more could we ask for? Hadn’t God worked everything out perfectly in His own time? We could only marvel at His goodness to us and pray again for divine guidance.