Childhood Leukemia Story - Jason - 04 - Bad News

Jason Story of Child LeukemiaBAD NEWS

The morning had been rough on everyone. Jason had already had the bone marrow and was whimpering. Dad and Wes looked like they had been through the mill. Wes was drained, but Dad seemed to be talking endlessly about anything that came into his mind. No one needed to ask him if he were nervous! I had only been there for a few minutes when Wes and I were called into Dr. Truman’s office.
The doctor sighed and leaned back in his chair, looking weary and disturbed. “I’m afraid I have some bad news,” he said. “The leukemia is back. Unfortunately, the disease is stronger than the chemicals trying to combat it. Chemotherapy is not going to work. We can most likely obtain another remission but we cannot hold it. There will be more relapses and possibly more remissions, but each 1 be shorter than the one before. really there be no further remission.” 
We looked at each other, then back at Dr. Truman.
“So now what do we do?”
“Bone marrow transplant,” he replied.
I remembered Lauren telling us that’s what she was waiting for. Now it was Jason! What was it? The doctor explained that first Jason would have to be brought back into remission. Then a compatible donor would have to be found. Jason’s bone marrow would then be treated with chemotherapy and, possibly, with radiation to destroy it. Next, the healthy marrow from the donor would be put into his system (transfused) where it would multiply and completely replace his dead marrow. It sounded simple enough.
“What are the chances of success?”
“Not much better than 30% - 40%”
What are Jason’s long term chances without it?”
Zero.
What choice did we have?
None!
“Where do we find a donor?”
“Hopefully, in one of his siblings.”
This could affect Bethany, Bryan, or MaryEllen! What would they have to be put through? Was there risk for them? I was terribly confused! I had always feared a relapse and, now that it had occurred, it introduced a whole new set of problems and, at the moment, somewhat of a numbness.
There wasn’t much to be said at that point. We left, with our new goal to get Jason back into remission. I didn’t want to face what I knew lay ahead; there would be more chemotherapy, more sickness, more moodiness, and more uncertainty. But with all my numbness and confusion, there was an awareness that, in spite of all the unknowns, there would be more grace and more strength from God, our “very present help in trouble.”

MaryEllen - bone marrow doner. 

MaryEllen - bone marrow doner.


I knew that the Lord would continue to help me to accept, realistically, what was happening, do what needed to be done, and at the same time leave the whole situation with Him. I felt weary and weak, but not let down. I was prepared to go on knowing that this time, too, God would supply added strength and comfort. We had come this far and God was certainly able to do more than we could ask or think. We knew His will would be done. In my opinion, it was wrong to expect that God had to heal our son. If He chose not to, for reasons known only to Him, there would be no room for bitterness because God hadn’t done what I thought He should. The best thing to do was to really leave it with Him and pray for the courage to accept whatever happened.
This was like starting all over again, with a stronger sense of urgency. If Jason did not reach a second remission, it was the beginning of the end. If he did reach remission and went on to have a bone marrow transplant, he still might not survive. It was difficult to know where to begin. I felt a tremendous need to hurry everything up. Unfortunately, nothing could be hurried, for every step would hinge on the results of the previous steps.
First, stronger chemotherapy would be administered for four weeks with the hope of achieving remission. Then we would have to find out which sibling, if any, would make a suitable donor. That would take more time. We would also need to find a hospital that would take Jason. We decided to investigate possible hospitals while we were waiting for remission, so that when the time came to act we would know which one to contact.
Wes did most of this research and was very surprised to find that, on the whole, hospitals were not all that concerned with our son’s welfare. Money seemed more important than saving a sixyear-old’s life. Naturally, we had a difficult time accepting that. One institution wanted $100,000.00 on admission and another wanted $150,000.00. It was incredible!
When we asked whether we would be refused treatment if we did not have that amount available, our question was ignored.
Instead, the conversation was turned to a discussion on long waiting lists and limited beds.
When Jason first came down with leukemia we did not have medical insurance. Wes had been in business for himself for a short time and could not afford it. This really bothered me for a long time. We had always had excellent health coverage before. Why would the Lord allow Jason to get sick then? I knew God made no mistakes. It just seemed like it would have been so much easier without the burden of paying thousands and thousands of dollars to hospitals. I expressed these feelings to a friend who responded that maybe it was possible to be so insured that there was no room for God to work. I thought about that a lot and finally decided that it was true. Where is the need for God to provide and perform miracles if everything is taken care of by insurance? While I am not saying that insurance is wrong, I am saying that God was able, in our circumstances, to teach us a lot more about faith and trust than we might otherwise have learned.
While we investigated hospitals we also inquired about statistics for survival and for cure, etc. Wes was starting to wonder whether the transplant was too risky to try. I seconded his questions to some degree, but not to the point that I was ready to forego the transplant. I had the “advantage” of being at the hospital regularly and watching the children who went from one relapse to the next, growing weaker all the time and definitely not living a normal life. Wes thought that we could spend a quality year, or whatever time we had together, until Jason finally left us.
I realized there was no such thing as “quality time” when most of it would be spent in treatment and weakness. We knew that as Jason’s parents we had to know that we had done everything there was to do and had exhausted every possibility before we said no to a suggested treatment. This was our personal feeling. Of parents that feel otherwise, I am not critical. There are very real threats to transplants and we faced the fact that we might be signing Jason’s death warrant by agreeing to it. However, we felt that without it death would eventually come anyway.
While Wes tried to find a solution to the hospital situation, many of our friends were working hard at this same task. They were calling every conceivable organization to inquire about financial aid. No one could answer their questions in the way they had hoped. Referrals to other agencies and apologies for not being able to do anything were the standard replies. It was this exhausting and depressing attempt to be helpful that prompted them to call Washington, D.C. There must be some way to save Jason, even if it meant going to the President.
All this was being done without our involvement, so we were very surprised when a special phone call came one night.
Wes answered the phone and after he said, “Yes, I’ll hold,” he covered the phone and told me, with a look of total shock, “It’s the White House!”
I was stunned, impatient for him to finish his conversation and fill me in. It was a Mr. Batton, one of the President’s aides, who was calling to get all the details of our situation. After Wes had explained why we weren’t able to pay for Jason’s transplant, and what the hospitals were requiring, Mr. Batton was indignant.
“This is America, and we don’t let six-year-olds die because they can’t afford an operation! You relax and take care of your family. I’ll notify the necessary offices, and we’ll get this taken care off’
Needless to say, this call left us excited and hopeful that things might come together after all! Earlier that evening, Wes had mentioned to his mother that running into so many dead ends was getting disheartening. His mother reminded him not to stop trusting that God would take care of things. When the call came, we could hardly believe that Washington would concern itself with our family!
When we had time to really think about it all we were almost ashamed. Just because the President called we had felt relief.
Wasn’t the Lord on our side as well? Hadn’t He, infinitely greater than any man, been concerned about our family all along? And doesn’t His power far surpass any ability, even that of the President of this great country? We had been looking at things only from the human side. But God was going to show us that He could work this out apart altogether from the President and independent of all our efforts.
The White House call attracted the attention of the news media and Jason began to be very popular in the papers. This press coverage led to a special relationship with reporter Barbie Walsh, who became like one of the family during Jason’s long illness. With all the media attention, many people became avid followers of his progress. The letters that came from these new friends boosted him through the frequent ups and downs of treatment. One of the first letters was from a man named Bob:
“Hi Jason!
I read about you in the paper tonight and want to thank you and your mom and dad for all the nice things you all said. It made me feel real good. It still does! Just like your dad, Jason, lam also proud to be an American and lam glad the President is helping. I want to help too.
So I have enclosed a few dollars for you to spend for whatever you want. Please stay brave — I’m very, very proud of you and Jam going to pray with my family and friends for you, to ask God to help you all be brave. Oh, by the way, I have a little Cocker Spaniel named Sasha that sure would like to see you someday, so we will be looking forward to seeing you. Remember, stay brave.
From a friend you haven’t met yet,
 Bob”
The support from the area was amazing. Children sent the contents of their piggy banks. Sweet, elderly folks sent all kinds of good-luck charms and kind letters with checks enclosed. Lists for thank you notes were longer every day and a growing warmth was felt in spite of the problems I knew would not go away.