A Long Day

I am writing today from my home away from home, Joe DiMaggio Children's hospital. Most of you know about my son Josh, a leukemia warrior. He is two years, one month and twenty four days into his battle. In his current phase of treatment, we return to the hospital every 84 days for our "long day," which consists of a spinal tap with chemo (methotrexate) flush and a second (nasty) dose of vincristine.  The spinal tap is necessary because oftentimes, the leukemia cells lurk in the central nervous system, but are too tiny to detect. The methotrexate is supposed to take care of that.  But the central nervous system is where those damn leukemia cells will most likely reappear in the case of a relapse. So, every 84 days, I wait with my nine year old son while he is sedated, and then I wait to hear that (fear #1), he has woken up from the sedation and (fear #2) I wait to hear nothing.  For a week. Because hearing nothing means that he has not relapsed. After seven long, worry-filled days, that fear is shoved as far back in my brain as possible. Until spinal day rolls around again.

Today, another fear is at the forefront of my mind. Josh's oncologist is concerned that the treatment of his central nervous system is actually damaging him. He has back pain and periodic numbness in his legs. If there is damage and it is bad enough, they might stop this part of his treatment. They might stop the treatment that is preventing a relapse. That is saving my baby's life. And that scares me to my core.  So, Josh laid down on the MRI table, kicked me out of the room and left me to pace. And worry. And pace. And worry. And pace.

Leukemia is often dismissed because the cure rate is so high in kids.  I've been told it's not "real" cancer. But it is the number one childhood cancer diagnosed. I'm talking about thousands of kids who are diagnosed each year. And hundreds of those kids die every year.

Tiffany died at age 16 after a bone marrow transplant.
Taylor is forever 12. She, too, succumbed after a bone marrow transplant.
Logan, 12, was in the same phase of treatment as Josh. He got the stomach flu, became septic and passed away in his sleep.

This is the fear I live with daily. And I will live with this fear until the day I die, or the day a cure is found. I will run until that day. With your help and with your dedication, we will win this fight. We WILL find a cure. My family is counting on it.