Be the Match

Last week, a friend of mine donated hematopoietic stem cells to be used in new research on gene therapy for those with Shwachman-Diamond Syndrome, a genetic disease that affects the bone marrow, causing it to fail.  She did this in hopes of new treatments for her daughter and others who are affected.  She will spend the next 7-30 days recovering, if she is a typical case.  

She asked me to follow her on social media and to get the word out about the research going on at Boston Children’s Hospital.

Notably, she didn’t ask me to recommit to be a bone marrow donor.

That would be the biggest ask, don’t you think?

I first fundraised for the Leukemia and Lymphoma Society’s Team in Training back in 2003 when I was living in Rhode Island.  I ran a half marathon in Virginia Beach that year in honor of my cousin’s husband, who would in the ensuing years be put through the ringer with both diseases.  

In 2010, I met up with the Team again in Boston, where we ran back and forth on Route 9 in preparation for the Boston Marathon.  I mostly ran with my coach, but I was excited to also run into a high school friend I’m not sure I’d seen since he delivered his valedictory speech on the day he was cured of leukemia.  

During one of our training sessions, our team was visited by representatives from Be the Match.  I already knew that sometimes a family member can provide bone marrow needed for a transplant in order to treat blood cancers (as my cousin’s brother was in order to help him) but other times, recipients are at the mercy of strangers who volunteer.  My high school friend and I each swabbed our cheeks, filled out the paperwork, and signed up.

That was 12 years ago now.

Would they still have my cheek sample from 12 years ago?  All it would take would be a few clicks, or a quick email to find out, but why would I sign up when I might never be a match for anyone?

I took some time to review the pledge I made in 2010:

Your commitment to patients Once you join the registry, the most important thing you can do is stay committed. Show your commitment by taking this life-saving pledge:
As a Member of the Be The Match Registry® 
I understand that:

• By joining the registry, I am saying I am willing to donate to any patient in need.
• The cheek swab I provide when I join will only be used to add me to the registry. It will not be a donation for a patient.
• I will be listed on the registry until I am 61, unless I inform Be The Match® that I’m unwilling or unable to donate.

If I match a patient:

• I will respond quickly.
• I will be asked to give a blood sample for further testing.
• I will be asked to make a time commitment of 20 to 30 hours over a 4- to 6-week period to attend appointments and donate.
• If I donate peripheral blood stem cells (PBSC), I will receive injections of a drug called filgrastim to increase the number of blood-forming cells in my bloodstream.
• If I donate marrow, anesthesia will be used.

I promise to:

• Keep my Be The Match contact information up to date.
• Share my decision to join the registry with family and friends so I have their support if called as a match.

I read it over, searched my email for my old donor ID number, and then updated my contact information.  I clicked submit on the form and felt flooded by a wave of possibilities: the chance that it wouldn’t matter to anyone, and the chance that it would make all the difference.

Pray for my friend.  Pray for her daughter.  And ask yourself if you might be able to donate, either money or your own cheek cells and commitment too.​