Posted: October 29, 2014
5 Years Old at Diagnosis
Colin’s story began on Monday, April 25th, 2011. He had turned five on April 18th, and it was time for his well-child check-up. He had been feeling very fatigued, and had looked extremely pale for about three weeks, so my husband, Shane, and I knew we needed to address those issues with his pediatrician. After the usual height, weight, temperature, etc, we explained what had been going on. We all agreed that further testing was necessary, so they sent us to the lab to have Colin’s blood drawn.
That evening, the pediatrician called with the results. I immediately knew something was wrong, by the tone of his voice. He began to explain the numbers, all of Colin’s blood counts, and finally said, “Betty, it looks like leukemia.” By this point, Shane had come outside, and I couldn’t do anything but hand him the phone, and collapse in a heap on the ground.
I could hear the devastation in Shane’s voice. He listened to the doctor go through the lab results again, and he told my husband that he had admitted Colin to the Children’s Hospital at St. Francis, where we were expected as soon as possible. We hastily packed some things, and left.
Once we arrived at the hospital, we were admitted into a room on the third floor of the Children’s Hospital, which we later found out was the oncology floor. The next 24 hours were a blur of IV starts, blood draws, meetings with doctors, and no sleep. Tuesday, Colin had a bone marrow aspirate, and his pediatric oncologist, Dr. Bourland, met with us to discuss the results. Colin was then officially diagnosed with acute lymphoblastic leukemia, or ALL. She told us that ALL is a fast-growing cancer of the white blood cells. In ALL, the bone marrow makes lots of unformed cells called blasts that normally would develop into lymphocytes. However, the blasts are abnormal. They do not develop and cannot fight infections. The number of abnormal cells (or leukemia cells) grows quickly. They crowd out the normal red blood cells, white blood cells and platelets the body needs.
She also told us that the prognosis was really good, that with chemotherapy, more than 95% of patients with Colin’s factors go into remission. We had tons of questions, mostly about Colin’s quality of life. She explained all about how therapy worked, from induction, to consolidation, to maintenance. Dr. Bourland also explained about putting Colin on a study, through the Children’s Oncology Group. She told us the study would track all of Colin’s results, and that the goal of the COG was to improve cure rate, while decreasing long-term toxicity of chemotherapy. It was the first time we had heard of CureSearch. We learned that the organization offers standardized care, and that Colin would be receiving the same treatment he would have received at any COG hospital. It was such a relief to be able to stay within our local support system!
The rest of the week consisted of several blood transfusions, as well as surgery to place a port, through which Colin will receive all further treatment, as well as have blood drawn. He was given his first chemo treatment that Thursday, after the port placement, with no side effects.
Since that initial hospital stay, Colin has been hospitalized about 10 more times, with complications from illness or to monitor his liver when receiving a particularly toxic chemo. He is in the clinic once every two weeks, which has decreased from once a week. His entire oncology team, all of the doctors and nurses, have become family. Going to the clinic, while I don’t look forward to it, is not a dreaded event. It takes a special person to do what his team does day after day.
At the time of diagnosis, no one in our family had any knowledge of cancer. We knew that our life had changed drastically, and that we would have to find our new normal. Although the diagnosis was a shock to our entire family, we have a great support system, and look forward to the day when not only Colin, but every child, is 100% cured.
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