Childhood Leukemia Story - Jason - 01 - Time Stops

Jason Story of Child LeukemiaTIME STOPS
”It is leukemia.”
Those were the words that froze time and stopped our world from turning. We were sitting in the offices of Dr. Truman, a specialist in Boston.
He had begun very graciously, “I told you earlier that what we were facing was most likely aplastic anemia or leukemia. Well, it is leukemia. It was November 7, 1983 — a day seared into our memories for life. The doctor was speaking about our 4 1/2-yr.-old son, our Jason. Numbly, we nodded. This was really happening. No one was going to come in and say “There’s been a mistake; Jason will be fine in a few days.” He really had cancer. We were nodding in agreement because it was impossible to speak. With no real warning, our lives suddenly seemed to be turning upside down. We did not fully realize it at the time but we were about to enter a whole different world — a subculture with its own language, phrases, significant dates, heroes, villains and role-models.
It had all begun a few days before. The fiftieth anniversary of my beloved grandparents was coming up and my mother had planned a special dinner at a very quaint little restaurant in Connecticut. All my brothers and sisters would be there and it would be wonderful to be together to celebrate such a special occasion. That it was also the 6th wedding anniversary for Wes and me seemed insignificant compared to their 50th, yet it was precious to us. We were convinced the Lord had drawn us together and were thankful for the love and happiness we had shared. It was also a little overwhelming to think that in those six years we had three children — Jason, Bethany and Bryan. We weren’t so sure we wanted to keep up that pace for the next six years... but we loved each of our children dearly.
The anniversary party was Saturday, November 5th, so we made plans to go to Connecticut on Saturday morning. My friend, Shawn, was going to baby-sit. Everything was set. Friday, Jason’s color was strange. He was sitting on the kitchen table having his hair trimmed; wrinkling his little nose as the wisps of falling blond hair tickled his face. I noticed his face nearly matched the gold walls. Other strange things had been happening, too. He had complained of the light hurting his eyes and of his legs being too tired to walk. He had a physical when he started nursery school in September and every thing seemed normal. Why, just a few weeks later, was he looking so pale? I thought this might be serious and called the doctor. However, it was Friday afternoon and the office was busy. I was put on hold and apparently forgotten. I hung up and by the time I called again the office was closed. It wouldn’t matter now if we waited until Monday morning. Once more, looking back, I am glad that things happened as they did or we would never have made it to the anniversary party.

When we arrived at my mother’s in Connecticut she took one look at Jason and nearly fainted. She describes what she felt as a weakness behind her knees and a buzzing behind her ears. Being a nurse and seeing her grandson in that condition didn’t give her any comfort.
She asked how he had been acting and said “Oh, honey, you get that child to a doctor as soon as you get home. With color like that the first thing you’ll have to do is rule out leukemia.”
We all just looked at each other. My sister, Mary Ellen, was upset with mom for saying such a thing. She thought that sounded ridiculous. I would have liked to think that sounded crazy but I knew my mother would not have said such a thing if she did not really suspect it was true. Some nurses are alarmists but my mother never was. She is realistic and usually when she suspected something when we were young she was right. There was nothing we could do about it until Monday so we went on with our plans. The evening was a success and Grammy and Grampy Flint had a good time. I had compiled a memory book for them of pictures and brief writings of incidents that we all remembered about them. They had a good time recalling Mary Ellen’s giving Grammy a rubber snake, the dog and cat fighting, our grinding peanuts into peanut butter on her stone wall, etc. Amidst all the laughter and joy I could not shake the misgivings I was feeling about Jason’s health. Leukemia?
Sunday night we returned home to New Hampshire. Wes called the pediatrician’s office. The doctor on call listened as Wes explained all the symptoms puzzling us. There was nothing to be done then, but he asked us to meet our doctor in the office the following morning at nine. It sounded like a possible liver problem or hepatitis. We went to bed knowing that at least by the next day we would know what was wrong with our son.
We were fortunate at that time to have Wes’s parents living next door. That would prove to be a tremendous help in the months ahead. On that unforgettable Monday morning, we were able to leave Bryan and Bethany with them and take Jason for his appointment.
Our doctor had been filled in and was expecting us. He was noticeably concerned when he saw Jason. He examined him and sent us across the street for blood work. That was Jason’s first experience in what was to be a never-ending series of punctures and needles. He was very brave and I was amazed that he hardly whimpered. His big blue eyes solemnly studied the technicians as they drew blood from the inside of his arm. He was feeling very weak and not at all himself, yet he was easy to manage and the technicians marveled at the stamina of a four-year-old. We were proud of him. When that was completed we went back across the street to learn what they wanted us to do next. We were a bit surprised to hear and see our dear pediatrician.
He was quiet and shaken as he said, “Something is very wrong with his blood counts. I have gone ahead and called a very good doctor in Boston and he is waiting for you. Get there as soon as you can. I’m very, very sorry.”
He hadn’t told us what he felt was wrong but there was no way for him to be absolutely sure then. The specialist in Boston would decide. My heart really went out to him that day and to every doctor that has the dreadful task of telling parents of young children (and anyone else for that matter) that something serious is wrong with one they love. It certainly is not an easy job.
So we were on our way again still not knowing for sure what we were facing. In my heart I knew Jason had leukemia and that he was a very sick little boy.

Jason Bethany Wes Vitale
I think I said that to Wes in the car because I remember his saying, “We just don’t know. We’ll have to wait and see. We know it’s serious or we wouldn’t be going to Boston but we’ll just have to leave it in God’s hands.”
I knew that was true and always since I’ve loved him just a little bit more for saying what he did. Somehow he always said the right thing to me, helping me to rely more on God and less on my own strength, something I had very little of at that moment.
Mass General’s pediatric hematology/oncology clinic was on the 6th floor of what was then called the Ambulatory Care Center of Massachusetts General Hospital. That is the oldest hospital in New England, having treated its first patient in 1821. It is a massive labyrinthine hospital, part modern and part archaic, situated between the Charles River and Government Center. One would have thought William Ernest Henley had this facility in mind when he wrote:
“The hospital, gray, quiet, old where life and death like friendly chauffeurs meet.”
The head of the clinic, Dr. Truman, was tall, distinguished and a true gentleman. We both liked him right away and felt instinctively that he knew what he was doing. His nurses, Sue and Monica, understood the confusion and fear we were feeling. As time went on we came to appreciate them as dedicated, caring professionals, who at the same time became almost part of our family. They entertained Jason while Dr. Truman spoke with us.
He explained that Jason would need a bone marrow aspiration and biopsy. A long thin needle would be inserted directly into the bone and a small amount of marrow fluid withdrawn (aspirated) for examination under a microscope. The biopsy would involve removal of a small core of bone. From the information we already had, Dr. Truman felt that we were dealing with either aplastic anemia or leukemia. They both sounded bad. I remember asking “If given a choice, which one should we choose?”
The doctor said, “Well, as strange as it may seem, it is easier to treat leukemia.”
So, incredible as it now sounds, I began to silently pray that my little boy had leukemia!
While we were waiting for the test results it was suggested that we get some lunch and walk around a bit. There was a lot to grasp and maybe a change of scenery would help. On the way to the elevator we passed a phone. We knew by now everyone at home must surely be wondering where we were, so Wes called his mother and had the awful job of telling her what we were facing. It was a difficult call to make and, no doubt, to receive.
Bad news usually travels fast and that day was no exception. By the time we returned to the office Wes’s dad and two very special friends — Fred Hill and his daughter, Jacki Smith — were waiting for us.
Uncle Fred ran his fingers through his snow white hair,
smiled gently and asked, “So how’s my buddy ole pal?
“Uncle Fred” had left a sick bed and Jacki four children to be with us. It is something I will never forget. At such a difficult hour it was so reassuring to have loved ones rally round and offer support. Just knowing we were not alone meant so much. Dad was able to joke with Jason and to get his mind off his troubles. Having his Grampy there made things a little better even though he was feeling tired and afraid.
When the time came to go in and hear the verdict, nothing could make things better for us. I felt that we were awaiting a sentence in court. in a way we were, because nothing would ever be quite the same again. While our minds were whirling we went along as if nothing were wrong. What else was there to do? Jason needed the security of strong parents and, by the grace of God, that was what he was going to get no matter how hard it was to act “normal.” The staff was kind enough to include all in the discussion that followed. Usually Dr. Truman addresses just the parents but that day there were five of us.
And so, with an ominous sense of foreboding, we heard his diagnosis. When words did come we asked what the next steps were and what chance Jason had of recovering. Suddenly there were so many questions and so much to learn. A chemotherapy protocol a program of drugs and dosages — would be randomly selected by computer because two different ones were being tried nationwide. Blood transfusions were needed, as well as a spinal tap to see if the disease had infiltrated the spinal fluid. Tomorrow would be another day and Jason had been through enough for one day. Tomorrow we would also find out more about the type of leukemia we were treating and which risk group he was in. There would be tomorrow.. .yet it was no longer a day to look forward to.
Amid all our almost instantaneous fears and trepidation, God granted us a peace and a calm acceptance of the situation that I marvel at today. We did not lash out in anger or go to pieces. We knew that God would do what was best for Jason and would see that we had the necessary strength to endure whatever lay ahead. I cannot imagine going through that day, and the many following, without that assurance. Knowing that there was a God who held our breath in his hand, numbered the hairs of our heads, and was ready to help us was a tremendous comfort. But then, sitting in that doctor’s office, it was difficult to imagine getting up and continuing daily life. There were questions from Dad and Uncle Fred as a few tears ran silently down Jacki’s cheeks. This was overwhelming for us all. When it seemed there was nothing left to do but leave, Uncle Fred suggested we pray. Although they were invited to stay, the staff left quickly and Uncle Fred commended Jason and us, his parents, into the Lord’s hands. He knew our future was uncertain and that we would need God’s help on a moment-by-moment basis. How true!
Where had this invader come from? Had Jason been fine one day and leukemia the next? Our minds were filled with questions, some of which would never be answered. The cause of leukemia is not known. Some feel it starts with a virus, while others think that it has more to do with the immune system’s malfunctioning. For whatever reason, Jason’s bone marrow was not behaving correctly. We had always thought leukemia was “cancer of the blood.”
This is not an accurate description. The bone marrow produces all the blood cells for the body. There are white cells, red cells, and platelets. Jason’s marrow had something extra. There were abnormal cells present called “blasts.” While the red cells were carrying oxygen, the white cells fighting infection, and the platelets controlling bleeding, these blasts were doing nothing but overcrowding the marrow. In such overcrowded conditions it is impossible for the good cells to work properly. Because red cells were lacking, Jason was anemic, in danger of bleeding and susceptible to infection. We did not understand all of this that first day in the office. It would take time for all that we had been told to sink in.
It was dark when we left the hospital and as we traveled rather quietly up the highway Jason looked out at all the lights. “Do
people die from leukemia? It’s really bad, isn’t it?”
It would have been so easy to lie to him. Saying “Oh no, it’s not that bad” sounded so much better than being honest. Yet how
could we lie only to have him find out later on?
“Yes, some people do die with this disease but many get better and go right back to a normal life.”
He thought about this for a minute and said, “Well, that’s okay, God will take care of me and do whatever He wants.”
The faith of a child was a marvel to witness. He was perfectly content to leave it with the Lord. How much we could learn
from him!
Suddenly Jason recognized we were on Route 1.
“Let’s go see Joey,” he practically yelled.
Joe Procopio was a close friend who was the best man at our wedding and had later married my cousin Jan. Jason was crazy about him. It seemed only natural that, after the kind of day he had put in, he would want to see him. Although we were anxious to get home, we decided to stop by his place, a few minutes from the highway. As Joe opened the door he was very surprised to see us. He gathered Jason up for a hug. Living in New Hampshire, we did not drop in often. He was more puzzled to see that only Jason was with us.
We explained where we had been and told him, “Jason has leukemia.”
Poor Joe! Putting myself in his place now, I think we were not very tactful in telling him. Perhaps there is no right way to deliver bad news. His smiles faded quickly and he paled as Jason told him about the tests he had. Jason seemed glad to be able to tell someone special just how he felt and how brave he had tried to be. Although the visit was very short it seemed to make going home easier because we were slowly getting used to the idea as we talked about it.
Home - it is usually the most welcome of sights, a place to relax, to kick off your shoes and unwind. This time my feet felt like lead weights as I walked toward the door. Once inside I felt better. The other children had missed us and wanted to hug Jason.
Bethany, her golden ponytails flying, came skipping over to hug her brother. She backed away only slightly to ask, “Are you okay?”
Bryan smiled and crawled over to us, happy we were home again. His blue eyes sparkled and he giggled at Jason.
Yes, things were more normal here. Wes’s sister, Faith, was there with her baby and, from the look of things; both she and Mom had put in a very upsetting day as well. Their eyes were red and teary and we could read the heartache on their faces. Truly, a family suffers together just as it rejoices together. There was no rejoicing now, only confusion and uncertainty. The phone kept ringing, connecting us with family and friends wanting to comfort and offer their help in whatever capacity they could. The pain was real for them, too. If the callers lived far away, they felt guilty because they couldn’t help. If they worked, that made it difficult to pitch in. Everyone felt so helpless. There was one thing that everyone could do, though, and that was to pray for all of us. The power of prayer is truly amazing and we could actually feel the strength it brought.
It meant so much to hear the concern and to know that so many friends were there for us. Without them it would have been a lonely time. As I was thinking along these lines, the door bell rang and in walked Uncle Joe and Aunt Fran (Joey’s parents). They had taken the time, on a chilly November evening, to drive for an hour just to let us know of their concern. Things like that are not forgotten. The support gained from the unselfish help of friends carried us over many rough times.