Saturday September 14th, I attended a fundraiser hosted by Julian’s Dinosaur Guild (http://www.juliansguild.org/julian/home.html). The guild was started in honor of Julian Blackwell, who was diagnosed with Aplastic Anemia at the age of 3, in 2010, and underwent a bone marrow transplant in 2011.
The event was emceed by Keith Eldridge of
KOMO 4 News, and donations raised help fund Dr. Akiko Shimamura’s research of
bone marrow failure diseases at the
and Seattle Children’s Hospital. Fred
Dr. Shimamura is a leading expert in Aplastic Anemia and spoke at the event about some exciting work being done in her lab right now. One particular study has identified gene markers that can help predict up to 10% of patients who will likely not respond to ATG treatment. I imagine that, in the future, this may help develop a routine screening protocol that can spare “non-responders” from a harsh round of ATG treatment, and perhaps direct earlier efforts toward bone marrow transplantation or participation in clinical trials.
At the event, I had the opportunity to introduce myself to Dr. Shimamura and chat with her briefly about Ryan. She reassured me that there is still time for the ATG to work, but that she would be happy to see him at her clinic for a consultation.
Last week, Ryan’s doctor determined that we are at the point where he recommends a consultation with Dr. Shimamura. Since we are not quite to the “3-month post-ATG” benchmark when initial evaluation normally occurs, I simply asked the doctor if he wished that he were seeing more improvement in Ryan’s counts at 2 ½ months in. He said that he has had some patients who were “late responders”, so he is still hopeful, but that he would like to have seen Ryan not so dependent on transfusions by now. I asked him if another bone marrow biopsy would be scheduled soon to see how things are looking. Unfortunately, he said that it didn't make sense to do one right now, because without much cell growth (i.e. increases in counts), he expects that Ryan’s biopsy would look the same as it did in June. Enough said. With that, our conversation shifted back to setting up the referral to Dr. Shimamura, transferring bone marrow biopsy slides to her, etc.
Back to the fundraiser for Julian’s Dinosaur Guild… The event also paid tribute to Julian’s two year bone marrow “transplantversary”! It was encouraging to see Julian running around full of energy and hear that there were other bone marrow failure survivor’s in the room, including another child who has successfully been treated to remission with ATG. However, the most touching moment in the evening came when the audience was introduced to Andrew, Julian’s bone marrow donor.
Two years earlier, Andrew had been in the middle of planning his wedding when he received the call asking him if he would be willing to donate. Just days prior to the fundraiser, Julian and Andrew met in person for the first time. Onstage, Julian’s family presented Andrew with a framed photo of them both together, with messages of thanks filling the matting around the image. In that moment, Keith Eldridge asked Andrew why he had made the decision to donate. An emotional Andrew put his hand on Julian’s shoulder, then looked up at the audience and simply asked “Why would you not?”
Would you be willing to save a life? Did you know that you can easily register online as a potential bone marrow donor? A kit will be sent to you and you simply swab your cheek and return it – no initial blood draw is needed. Chances are, you will never be contacted and have to decide. However, even with over 9.5 million people already in the registry, some people requiring a bone marrow transplant will only have one match (or no match at all). What if you are the one in 9.5 million match needed to save a life? Would you donate? Why would you not?
To register, visit www.bethematch.org Please, don’t just think about it as something nice you might do someday. Take a few minutes right now to sign up online. There might already be a patient out there that may not have a “someday” without the few minutes it takes you to register today.