Thursday, May 26, 2016
"If they aren't my match, maybe they'll be someone else's."
In case you haven't followed Rowan's story long enough to know where he stands with regards to a bone marrow donor match, here is a short synopsis...
1~ Despite his life threatening ongoing health issues, and repeat hospitalizations, doctors here in Texas have always felt like Rowan would be too risky to receive a standard bone marrow transplant.
2~ We have spent the past 2 years traveling to Seattle, Washington, seeing specialists there on multiple occasions. They have done exhaustive testing and research and finally determined that the benefit of a special type of bone marrow transplant protocol that they have a clinical trial for there in Seattle, should outweigh the risk for Rowan.
3~ Due to his ongoing septic episodes, repeat ICU stays, and continued dependency on tpn, neupogen and ivig infusions, they decided it was time to proceed with transplant this Summer 2016.
4~ His sister, Zoe and brother, Ian were both tested over a year ago and Zoe was found to be a perfect 10 out of 10 match!
5~ Unfortunately, further lab work for Zoe uncovered a multitude of unfavorable markers, including autoimmune and connective tissue disease, among others. So, she was rejected as Rowan's potential sibling donor.
6~ The transplant team ran a search of the national bone marrow registry and found zero suitable donor matches for Rowan.
7~ The transplant team is currently looking at HLA typing from both Brian and myself, Rowan's parents, to see if one of us would be preferable over the other to be a haplo-identical or half match donor. This has not been considered an ideal type of transplant in the past, due to the increased complications of not being a full match, and increased graft versus host risks, but there have been some improvements to the protocols that they can now choose from. In the absence of an approved sibling match, and with zero matches from the registry, we do not currently have any other viable options.
We obviously were devastated when they declined to use Zoe, she was our ace in the hole. Then, to get the double whammy news that there were no matches found during the unrelated donor search, that was a bitter pill to swallow as well. But not for Rowan...ever the optimist, Rowan told us, "It's okay Mom, God already knew I didn't have a match on there. He's got it all worked out."
As we wait to hear if Brian or I will be a suitable choice to participate in the haplo-transplant, we are reciting Rowan's words in our heads constantly..."He's got it all worked out." In the meantime, the transplant team assures us that they will continue to scan the national registry, hoping that someone newly added will be a better match. That is where our family and friends, and even strangers come in. We are asking that everyone who is willing and able to, please sign up on one of the donor sites. There are several avenues to do this:
Come out and join us next Tuesday, at a Marrow Me Donor Drive being held in Rowan's honor. All it takes is a quick cheek swab!
Hosted by: Keller Williams City View Office
Date: Tuesday, May 31st
Time: 10 am to 4 pm.
Address: 10999 IH10 West, Suite 150, San Antonio, Texas 78230
Ages: 18 to 44 years old
When we told Rowan that people were signing up all over the country to be swabbed to see if they were his match, he immediately said: "I'm so happy people are trying to see if they are my match, and if they aren't my match, maybe they'll be someone else's." He's right! You might not be Rowan's match, but you'll still be his hero, and you could save someone else's life in the process.
One last thing, because Rowan is ALWAYS thinking of others, last night he asked me if we could ask people to please bring a box of cereal to the Marrow Me donor drive Tuesday, so he can add it to the cereal he has been collecting for Methodist Hospital to give to the San Antonio Food Bank in June. He said, "that way we can save two birds with one stone!" I like how he thinks!
So, we hope to see you out at Keller Williams City View Office next Tuesday, either to get your cheek swabbed, to drop off cereal, or to do both! Rowan will be there to thank you, hug you, and do his happy dance...