Please forgive my sloppiness, I'm writing quickly and on very little sleep or food. I just wanted to answer the most frequently asked questions. Nico's leukemia is subtype B Lymphoblastic Leukemia. This is the most curable type, but it requires three years of chemotherapy. Yes, I typed years. The first 6+ months are "intense," but the following 2.5 years he will lead a more normal life. The treatment is longer for boys because leukemia cells will hide in certain areas of the body and one of them is the scrotum. When treatment times were shorter they found children thought to be cured developed testicular cancer years later. The other problem site is the brain, which is why Nico received chemotherapy in his cerebrospinal fluid fluid yesterday as well as in his blood stream. The chemotherapy changes month to month, so every month will be very different. He will not lose his hair until the middle of the therapy (in about 3 months). We will not know whether he is considered a low, average or high risk for recurrence until after the first month. One of the ways in which this is determined is by periodically looking at his bone marrow and spinal fluid, so he will have to endure bone marrow biopsies and spinal taps periodically throughout his treatment. Thankfully, they will always put him under anesthesia before they perform a tap.
A lot of people have asked us if we saved his cord blood. Our primary hematologist/oncologist states that this would not be of help. He stated that new research has found that when they look at blood samples taken at birth from children that later developed leukemia, they have found primitive leukemia cells and there is a question now about using the cord blood of children that later develop leukemia.
A few people have also asked if he will be sterile from the chemotherapy. The doctors assure us that this is no longer true because the chemotherapy has become so specific and have much fewer long-term complications. He actually told us that one older patient actually became a father while on chemotherapy (I guess he was not feeling too sick).
I want to stress that this type of cancer has a great survival rate and this is long-term survival, not 5-year survival. But the treatment is really horrible. My loving, affectionate son now flinches when approached my strangers and this breaks my heart. I know that children are resilient and hopefully this can be undone. For now, he understands that everyone is potentially dangerous and he frequently puts his hand up and yells "no doctors" when he sees anyone in scrubs.
Thank you for your words of encouragement. It means a lot to both of us to know that people care for our little boy.
A lot of people have asked us if we saved his cord blood. Our primary hematologist/oncologist states that this would not be of help. He stated that new research has found that when they look at blood samples taken at birth from children that later developed leukemia, they have found primitive leukemia cells and there is a question now about using the cord blood of children that later develop leukemia.
A few people have also asked if he will be sterile from the chemotherapy. The doctors assure us that this is no longer true because the chemotherapy has become so specific and have much fewer long-term complications. He actually told us that one older patient actually became a father while on chemotherapy (I guess he was not feeling too sick).
I want to stress that this type of cancer has a great survival rate and this is long-term survival, not 5-year survival. But the treatment is really horrible. My loving, affectionate son now flinches when approached my strangers and this breaks my heart. I know that children are resilient and hopefully this can be undone. For now, he understands that everyone is potentially dangerous and he frequently puts his hand up and yells "no doctors" when he sees anyone in scrubs.
Thank you for your words of encouragement. It means a lot to both of us to know that people care for our little boy.
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