Super Sam versus the Marrow Monsters
Marrow.org is the website for the Be The Match bone marrow registry. It is also an informational resource and strives to provide support and education for patients and families. A month or so ago I received a Fed Ex package from them containing booklets, pamphlets and a DVD. I didn’t ask for this and I was unprepared to look through it it so I put the whole package in a corner of the bedroom to ignore until later. They got my name and address since the hospital had begun the process of securing my transplant. We have a little more than a week before things get serious. I survived the educational classes at the hospital without a panic attack so I finally broke into the Fed Ex this weekend.
The booklets didn’t give any information that I hadn’t heard before. Marrow.org has most of the info on their website. One thing they did include was a DVD made for children called Super Sam Versus the Marrow Monsters. Saturday Amira seemed to have more questions than usual. At dinner she said, “Mom, I have just one question about your cancer. Can kids get it?” I was honest and told her that yes, my cancer is the most common childhood cancer but it’s not contagious. She asked if she could get it and I told her it was possible but probably not and that kids get better much easier than adults. I decided to put the DVD in the PS3 for us to watch together as a family. Super Sam is a cartoon kid who has leukemia and needs a bone marrow transplant. It’s written for children who are themselves patients but it explained blood cancers very well using direct language. It includes interviews with doctors, nurses and children who have gone through the transplant process.
I also found some helpful diagrams and explanations about my disease, ALL, on NCI. Xander prefers to read for information opposed to watching but the cartoon was most helpful for Amira. This diagram shows that the blood production begins in the marrow with the stem cells. From there myloid cells and lymphoid cells are made. The type of leukemia depends on which type of cells are affected. AML (Acute Myeloid Leukemia) and CML (Chronic Myeloid Leukemia) affects the myloid cells and ALL (Acute Lymphoblastic Leukemia) and CLL (Chronic Lymphoblastic Leukemia) affects the lymphoid cells. The acute leukemias are fast growing and require immediate hospitalization and treatment or will kill within weeks. The chronic leukemias are slow growing and may be diagnosed long before symptoms appear and do not always require immediate treatment. Many patients with CML or CLL live for years before starting treatment.
I was originally diagnosed at the cancer center (not saying which one) with CLL and sent home. I was called a couple days later and told they were wrong and I needed to be admitted immediately to the James. Only two hospitals in Ohio treat acute leukemia, OSU medical center and Cleveland Clinic. Thankfully, OSU is only 15-20 minutes from our house.
To test the body for leukemia the doctor can look at the CBC (complete blood count) but need to biopsy the bone marrow for a definitive diagnosis.
The bone marrow shows the exact type of leukemia. I have B cell ALL. As for prognosis my advantages are that I’m young and otherwise healthy, the leukemia has not spread to my central nervous system and I have been in remission since beginning treatment. I came in with a high white blood cell count which is what makes transplant necessary to keep the leukemia away. It can hide in the body and show up later without long term treatment. My white blood cell count was 45,000 at my initial cancer diagnosis and jumped to 63,000 by the time I was admitted to the hospital. Normal WBC is between 4,000 and 11,000. I am currently at 9,000.
I was given a shot of a drug called Neulasta following my last chemo. The purpose of this is to help my WBC rebound more quickly. It worked but the side effect is bone pain. I have been experiencing this for the last week or so. My whole body hurts but especially in my joints. Pain meds help but since I can’t take regular advil, tylenol etc I’m not able to drive after taking a pill. I enjoy being chauffeured around but on the days I have to drive I can’t take anything for the pain. I’m hoping this starts to get better soon.