The Journey Begins

After months of seemingly endless testing, today begins the path toward treatment for Cole.  Treatment starts by heading to our new home at Cincinnatti Childen's Hospital for a week of intense physical testing to insure Cole is well enough to proceed.   Following testing will  be several weeks of chemotherapy that will kill his current bone marrow to make way for new, healthy marrow from his brother Ryan.

It was difficult watching my wife say goodbye to my 10 year old daughter, knowing that they would likely not see each other for 6 months or more.  Once Cole starts treatment, he can't have outside visitors who may carry infections and viruses.  It was even more difficult knowing that my family would never be the same once I started the car and drove away with Cole, Ryan and my wife while my daughter waved goodbye.

While it was easy to ask "Why him?" after he first got diagnosed, it's just as easy to ask "Why not him?"  Though the odds were in his favor never to get this disease, it turns out that no amount of money, love, or preparation can prevent it.  HLH strikes only one out of every one million children.  Perhaps we should've played the lottery the same day we got the news.   It's a genetic mutation passed on from each of the parents.  In fact, even more rare is that Cole's mutations live on two separate genes - something the doctor, the world's leading expert in HLH, said she'd seen only two other times in her career.  Maybe two lottery tickets were in order.

I recall speaking with the doctor when she first diagnosed Cole.  After she began explaining the disease, I remember hearing the word "genetic" echo in my head as my heart raced, realizing that I had two other children from the same gene pool who must now also be tested.

In many ways, despite the rarity and severity of the disease, I consider us lucky.  Lucky because my two other children ended up testing negative, lucky because we were able to find a donor in my older son and lucky because Cole has been able to work himself into a natural state of remission heading into chemotherapy.  I'm hopeful that this luck continues to work in his favor throughout treatment.  That would be the only lottery I care to win right now.