Wednesday, May 18, 2011

Bone Marrow...

I couldn't sleep last night. I got an email from Kristi about a child of someone she knows and it shook me. I'll share some of it below...editing it as it isn't my story to share...I did, however feel compelled that some of this get passed on.

[ 3-year-old son, XXXXX, has been fighting serious health issues dating back to January 2010. He has been in and out of the hospital multiple times since then, and most recently, we have been inpatient...for nearly a month.

Many people have inquired about XXXX’s current medical situation. He has had a very difficult and complex journey the last 17 months and, believe it or not, it will only get more difficult in the coming weeks. He was originally diagnosed in February 2010 with Hemophagocytic Lymphohistiocytosis (HLH) caused by the Epstein-Barr Virus (EBV). EBV is a common virus found in 90% of the population. In XXXXX’s case, his body is simply not able to fight off the EBV thus triggering the HLH, which is fatal if untreated. The only way to cure HLH is with chemotherapy, and if that doesn’t work, a bone marrow transplant. After 2 relapses in 2010, a lot of research and consulting with our team of was determined that XXXXX has a much more complicated and rare auto immune deficiency and he needed a bone marrow transplant as soon as possible. In December, he was officially diagnosed with Systemic EBV-Induced T-Cell Lymphoproliferative Disease of Early Childhood. As it turns out, he is only one of 26 documented cases in United States History.

As we lined up a few potential 9/10 matches from the national bone marrow registry and started to set up dates for transplant in February, XXXXX relapsed again. To make matters worse, while he was finishing his chemo and preparing for another date in April to transplant his donor backed out. So we found a new donor that was almost as good as the first, and set a transplant date for May 4th. But two weeks before, he relapsed yet again. This time, it was worse than ever before and XXXX was as sick as he’s been. Now, after nearly a year-and-a-half and 5 rounds of chemo, XXXX is close to being stable and we will begin the process again next week with the hope of a transplant in early June. On average, it takes 4-6 weeks to recover enough to be released from the hospital post-transplant. He will continue to be monitored and treated for months to come. But a successful transplant will cure his condition and XXXX will be able to enjoy a normal childhood...]

The email continued and encouraged people to consider getting registered to be a bone marrow donor.

Kristi and I have been so lucky that our kids have been realtively healthy...others have not been so lucky.

I couldn't stop thinking about how I would feel if I were in this situation. How desperate I would be for a donor I would ask everyone I knew to get registered: co-workers, friends, family, neighbors, the parking lot attendant I see daily, people I regularly say "hi" to on the bus, etc.

So, I'm asking you...anyone who has read this get registered. Not necessarily for this child...get registered as if it were Matt or Sam. If you've somehow ended up at this blog and don't really know me and my family...get registered as if it were one of your family members that were sick. Better yet, get registered with the intent that...God forbid...someone you love needs you. If, someday, you get the call telling you that someone you know is sick, your bone marrow has been coded and you're ready to help without delay. If it just so happens that you can be someone else's hero while you wait to help someone you know...all the better.

Registering is easy. Go to the following webiste:
Fill out the information and they will send you a kit where you take a some cheek swabs and return them for processing. You have to be between the ages of 18-60 to get registered...and then you're on the list. It isn't a promise that you'll donate if you get the call, it is just the first step.

In looking through their website, I noticed that they currently only have 400,000 people on the registry. That is such a small number...such a small fraction of the population. To the few that read this blog...please, get registered...and convince a friend, too.

1 comment:

  1. Thinking of your friend and their son. How scary for them.