As you struggle with the overwhelming emotional and medical issues surrounding your child's condition, something you may not hear as much about is long-term survival after acute lymphoblastic leukemia (ALL) and its side effects. Since our son's treatment for ALL occurred more than 20 years ago, we can't comment much on the latest protocols, drugs, or best treatment methods used today. We leave those key decisions to you and your doctors and nurses. We think the most important contribution we can make is to instead share our child's long-term experience, hopefully adding some positive feelings to your ordeal. We found such information scarce when we began this process, so maybe we can help by filling that void just a bit.
As we write this letter in summer 2010, our son Andrew is about to graduate from college. That's a great milestone for any student, but for him it's an especially gratifying accomplishment. In the summer of 1987 at age three, Andrew began having problems with a droopy eyelid in one eye which was difficult for doctors to explain, although it was thought to be "lazy eye." He saw several eye specialists and even had surgery to remove what was thought to be a hemangioma. By January 1988, however, as Andrew turned four years old, his left eye issues continued. We became further alarmed during an eye exam when his left eye appeared to be protruding slightly, his eye movement appeared restricted, and his vision very suddenly deteriorated. Andrew's pediatrician immediately suspected something more than lazy eye and advised us to have an urgent CT scan, which revealed bone degeneration around the left eye orbit.
We then chose to have him seen by specialists at Children's National since they had the experience we needed for what was becoming a very difficult diagnosis. After a series of tests, the doctors quickly determined that Andrew had ALL. This was about the most shocking result we could have imagined, but as details were explain to us it became apparent that Andrew was suffering from a leukemic mass growing behind his left eye that initially affected the nerve controlling the left eyelid, and later began causing the eye protrusion, and bone deterioration. This was an unusual presentation for ALL and we were thankful that the doctors' expertise allowed them to detect the disease when they did. Andrew began chemotherapy and radiation treatments immediately and was in remission within three weeks.
Although his ALL was considered higher risk because of central nervous system involvement at diagnosis, our fragile hopes were dashed when Andrew's condition later worsened and he relapsed in mid-1989. Once again, the relapse presented itself in a highly unusual manner, and Children's National doctors made innovative use of MRI technology to identify and diagnose the relapse early. This approach allowed Andrew's next round of treatments to begin at a stage that gave him the best chance of survival. After much discussion with doctors and nurses we agreed to have Andrew undergo a haplo-identical mis-matched bone marrow transplant. We were informed by our insurance company, however, that we would have to seek an alternative form of bone marrow autologous transplant at another area hospital. Knowing, at the time, that the autologous bone marrow transplant was even less tested than the haplo-identical mis-matched we appealed, with the help of Andrew's doctors, to the insurance company to allow us to remain at Children's National for the transplant. The insurance company agreed. You cannot imagine our relief. We had established a relationship with his doctors and nurses at Children's National and we had full confidence that they would do everything possible for Andrew.
The bone marrow transplant option gave him the best chance of overcoming ALL, but the doctors gave him only a 40 percent chance of surviving the transplant. In early September 1989, following a week of preparation through more chemotherapy and total body irradiation treatments, Andrew became the 13th patient to receive a bone marrow transplant at Children's National, receiving a 4 out of 6 antigen match from his father (no siblings). Andrew spent nearly three months in isolation, experiencing many ups and downs as his transplant began to take hold and he slowly regained an immune system. Throughout that period, we remember the many children receiving the same treatment as our son. The small daily advances and setbacks became magnified, and even now we are haunted by the memory of the children who, despite the best treatment possible, could not be saved. As the weeks went on, and after what now seems like an unbelievable ordeal, Andrew progressed well enough to be released in time to spend Thanksgiving 1989 at home!
During the years following his transplant, Andrew was fortunate to avoid further complications with ALL. We were extremely happy as the years passed and he reached the "five years out" milestone that had initially seemed so far off. We cannot relay the story of his recovery, however, without reference to the many side effects that have occurred as a result of his treatments. The doctors and nurses warned us of these dangers, and at the time our focus was on ensuring short-term survival so we simply accepted the risk, knowing that without the treatments our child likely had no future.
We still feel that was the best approach, but we advise that you begin preparing yourself and your child for many potential short and long-term side effects that can occur as a direct result of ALL treatments. In Andrew's case, the list includes graft versus host disease (GVH), stunted growth, a mild learning disability, thyroid cancer, cataracts, a brain tumor, hip replacement, and diabetes. At first glance, this list seems horribly intimidating, but these side effects did not all happen at once, and certainly not all survivors have experienced all of them. Most occurred spread over the 20-year period following the transplant. In each case, the doctors and nurses at Children's National helped us through various treatment options and recoveries. Our best advice is to take each episode as it comes, and you will get through them all! It may sound like a cliché, but you do learn to live one day at a time and to relish every small milestone in your child's life. We often joke to each other that we live on a different planet from other parents. We have maintained a large measure of hope for Andrew's future, but we remain vigilant. We have perhaps been a bit overprotective and indulgent, but we feel that he is no worse for it.
The most important thing to keep in mind is that Andrew's story represents the triumph of a child's will to survive despite all odds. When we started down this path, neither of us had any idea about how our son might react to the stress, and how that would affect his willingness to persevere. We continue to be amazed daily at how much Andrew has accomplished in spite of the obstacles he has faced. It has not been easy by any measure, and we as parents had to overcome the heartbreak of seeing him have to deal with medical problem after medical problem, any one of which would have discouraged even the most optimistic adult. Now, at age 26 and after eight years of hard work, he has reached yet another milestone and is about to graduate from college with a Bachelor of Science in Hospitality Management. He chose that field because he has a genuine interest in making people feel welcome and appreciated, in whatever hospitality setting he may work.
Andrew is our hero! His story still has a long way to go, and we are grateful for all the support he has received from his doctors and nurses at Children's National over the years. They gave him the chance to make all of this possible. We also wish that, as you begin or continue your child's story, you gain some hope and inspiration from ours.
Andrew's parents, Mike and Susan