The next 24 hours was spent anxiously waiting for the results of different tests. We met Dr. Michelle Vander Heyden in the Pediatric Intensive Care Unit, she was the first doctor to see James. Michelle was young and confident and though we knew we were looking at a form of cancer, she did not give us a false sense of hope, but her demeanor was somehow calming.
James was very sick, his body was rigid, he ran a fever and was crying a lot. His liver and spleen were inflamed and causing him stomach pain. It had been two weeks since we had first noticed that something was wrong and we were about to get some answers. Michelle told us that James had leukemia and described the disease as being "cancer of the white blood cells". Immature cells called "blasts" multiply in the bone marrow and crowd out the good cells and then infiltrate the organs. Now that we knew that it was leukemia, we had to find out the type and the sub-type. This would involve more tests, including a bone marrow biopsy, which would involve taking bone marrow from James' femur with a very large needle (a very painful procedure). During the biopsy Kristen and the nurses held James (positioning him on his side on the exam table). He was screaming as they tried to position the needle. The scene was intense and unbearable for me to watch. I wanted to stay by James' side and be strong for him as well as Kristen. I could tell by his screams that he was in agony, he tried to fight but they held him tight. I told James "It's alright buddy" as I clenched my fists and watched in horror. I wanted to scream, I wanted to save him but I knew that I couldn't. Anger and sadness flooded my body so much that I could no longer watch and slipped out of the room. I had never been more upset in my life. I sobbed in the hallway until it was all over.
Hours later Dr. Vander Heyden concluded that James had Acute Lymphocytic Leukemia (A.L.L.) and the sub type was called T-cell. He was considered "high risk" (as opposed to "standard risk") because of his age and his high white blood count. Our first question was survival rate, we wanted to know what percentage of children survive with this type of diagnosis I recall the statistic being somewhere around 70%, however we did not understand that figure was based on a 5 year survival rate. We held on to the 70% hope rate as we began our journey.
James, thank you for writing all of this down. sharing the signs and symptoms... my life partner has chronic leukemia, it has something to do with T-cells, and deals with inflamed organs (pancreas, liver, skin, stomach, intestines), like clockwork, every 3-4 months. Each time is worse than the time before. He's 41 and has lived with recurrence since he was 30.
ReplyDeletethank you for writing this I'm 18 also trying to start blogging your story really inspires me. I was diagnosed with brain cancer 6 years ago and I can't say my journey is anywhere close to yours I can answer any of those questions just to ease the pain
ReplyDeleteI think it must take a lot of strength to put this down in words, and I admire you for it. My brother died a year ago, and I know that isn't nearly the same as a child, but it is a sort of exorcism to set it down in writing and know that it might make a difference to somebody else. I hope you keep going with it.
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