From Helen Eisman
I have just read Peg's letter about her son and Rb. This is a letter about my son and Rhabdo.
Jonathan was 5 and a half years old in 1983, a fun loving little boy. In the early summer of that year his dad was playing with him, he noticed a lump on his left shoulder, over the scapula. We went to our Pediatrician who sent us to an orthopedist. He was x-rayed and we were told to see a surgeon, he thought it was a lymphoma or lipoma. I being a nurse, hoped for the latter of course. We went to a wonderful Pediatric Surgeon out of Columbia Presbyterian, Babies Hospital in New York. He operated and initially thought of it as a fatty tumor. Not to be. The next day the path report read, Rhabdomyosarcoma, rare form of childhood cancer of striated muscle. Luckily it was stage one disease. Totally removed. No need for radiation, but yes on the Chemo. We met with Dr. William Gerba, a prince of a man, who gave us the low down on everything and the options. We consulted the pediatrician, who said to go with the most offered and we fully complied. He was treated with VAC therapy, vincristine, actinomycin D, and cytoxan for 2 years. Scans, tests, you name it were all negative for any further disease process. We had escaped the claws of cancer. Or so we thought. Jonathan's life was always a trial, he was active, a poor student and always wanted to play. Perhaps he sensed something we had no idea about. In any case, life was a merry go round. Two weeks after he came off chemo, we had our third child. We had a perfect little family and life was good. Three children, a home, good jobs. Jonathan always added the spice we needed to our life. He was retained in seventh grade and didn't even seem to care that all his friends were moving on. We were amazed. Anycase, I always felt that the chemo had changed something in the brain. I researched and searched and there was the occasional article about chemo treatments and learning problems. I figured he would out grow it all sometime. He went to highschool, played the trombone, loved sport facts, knew everything about every sports person. School was a trial, but in his junior year he decided he wanted to go to Valley Forge Military College and be in the marching band. After that decision, he turned himself right around and was on his way. Graduation was a day in 1996 I never thought I would live to see. He had been accepted at the Forge and life was going to be great.
August 18, 1996, our anniversary, we took him off to college, kissed him goodbye and were told we would see him again in 6 weeks. He could write but there were no phone calls.
August 23, 1996, I was at work. The call came in to come and pick our son up, a mass had developed in the same place as before. Oh no. This is the beginning of the end I thought. My co-workers said I was being foolish thinking that way, it was probably a pulled muscle, not to be.
Off we went again to Babies Hosp. We saw Dr. Leonard Wexler. He said in all his years he had never seen Rhabdo return in the same place, so many years post treatment. He was operated on. It was Rhabdo, same cell structure as before, same everything, except it was so much larger and had been there for a very long time. The muscle had been dug out by the tumor and it had made itself a little bed.
And so began chemo, changes in the chemo, radiation, stem cell harvest, all the testing, the prodding the pushing only to find out in November, only 3 months later, it had metastasized to both lungs, all treatment to stop. All that was left was experimental at the NIH. So for 3 months he began the trips to Maryland with his father for experimental treatment and by March of 1997 he was having difficulty breathing, required oxygen 24 hours a day.
On March 18, 1997, our beloved 19 year old son, who weighed some 250 pounds with a 20 inch neck, succumbed in our living room to Rhabdomyosarcoma. His is the only case like this that our doctors have been able to locate. I shudder when I talk to someone and they tell me their child has the same disease. I believe there is no cure. I believe that if I had demanded cat scans on a yearly basis, it would have been seen sooner, I believe that my son died many years before his time because of a disease we can not harness. We are devastated with this.
I am trying to cope as all parents who have lost children try to cope. There is no sense in looking for why. It just happens. I try to offer myself to those who are traveling down the same road. As Peg mentioned, we try to be hopeful for them, but, guess what, just by virtue of who we are, they know.
If there are those who need to talk, I am here. Please offer my e-mail to those in need. eyesman@webspan.net my name is MsMoo.
Sends Helen E-mail
It is perfectly ok to post my letter. I too am a medical professional. Perhaps, someone, like me, surfing about, may come across my letter, just as I came across your page. Maybe, I too, could help someone else. Thank you for your answer. Helen Eisman.
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