In September of 2010, Dylan started having low-grade fevers every day around the same time. Progressively he got worse and complained of pain in his joints. Each day the pain was in a new joint. Afraid there was something terribly wrong, I nervously requested a complete blood test be done. The doctor sent the test out and in a short time Dylan’s fever got so high that he was out of school for the day. His fever reached 104.7, so I immediately called the Dr’s Office. I was told to come right in. I knew in my heart that something was wrong.
The blood test sent us to the Children’s Oncology department at Memorial Hospital. By the time we arrived, he was feeling worse. Dylan was immediately admitted and given an IV and brought in for testing on a bone marrow examination. Very quickly we learned that Dylan had Leukemia. Not sure what form, as the test results looked very differently than most. A few days later we discovered that he had Acute Lymphoblastic Leukemia with Positive Philadelphia Chromosome. This leukemia is only present in 5% of leukemia cases.
Learning all of this was devastating. I remember I feeling like I had been shot. Breathless and sick with worry, we progressed onto treatment. First a porto-cath was surgically placed into his chest. After 8 days, Dylan was finally feeling better.
The first dose of spinal chemo helped relieve his joint pain. We decided to put him on a clinical study and talked of a bone barrow transplant. With Philadelphia Chromosome, your chance of survival is not as good compared to ALL with no present chromosome.
A few weeks went by and both his twin brother and his older brother (by 2 years) were tested as possible bone marrow donors. Weeks of wondering which boy could help and who could donate were long and nerve racking. Unfortunately, neither brother is a match… another devastating result. So we make the decision to just continue on the study.
Dylan was doing okay and handling these grueling treatments. Time was slowly going by without too many serious side effects until the sixth month. A high dose methatrexate chemo had caused a rash with horrible mouth sores so bad that he could not eat or drink without tears of pain. With the right medicine and some time off, he healed and started to feel better. He has lost his hair, had bouts of vomiting and some fever. But, never anything that wouldn’t heal given some time and the right medicine.
Until recent, a new round of some oral chemo and two week after a treatment, a fever suddenly spiked. Knowing it happens is common, this fever (alongside with nausea and diarrhea) would not go away! Every day, for 4 days, his fevers got worse and higher every minute that passed. He was becoming lethargic and had no appetite. Each day was getting worse and worse.
He was given blood transfusions to raise his hemoglobin, but nothing changed. I started to worry and fee the stress of a new problem taking over Dylan’s body. Eight days in the hospital, and many days after that, they discovered a while blood cell that looked different. Both the Dr. and the Pathologist determined that he could have Ehrlichiosis – a rare virus that is sometimes given from a tick bite.
After doing some research, we realized he could have possibly contracted it from his prior blood transfusion. Dylan was weak with fever and nausea and was fed intravenously for many days while dealing with this. It was scary because we had absolutely no idea what was going on. Thank God we finally got the diagnosis of the Ehrlichiosis after all of that time. Dylan is getting better thanks to antibiotics and was able to continue chemo this Monday.
This has never been easy from the beginning. He is almost one year in and still has two more years to go. Pray he concurs and lives a long, precious life!