November is Bone Marrow Awareness Month and we want to share why becoming a bone marrow donor is such an incredible gift.
Our very own Healing Gardens team member, Caitlin Murray, is a new mama to her beautiful 4 month old, Roman Murray. We’ve mentioned before that Roman is a warrior and we’d like to share more of his story.
Little Roman came into this world with a crash landing and started his first 2 weeks of life in the NICU. This all came after what the doctors and nurses described as an easy (easy ha!) labor and a blissful delivery. Everyone in the room was enjoying the moment before his arrival (the epidural helped that) and celebrated me on my excellent pushing. My husband, Gabe, got to catch Roman and place him on my chest which always fills my heart with so much love and joy.
Once he was on my chest all I remember was him slowly blinking his eyes open and that he was SO soft. He did not come out screaming so all of the nurses were rubbing his back encouraging him to try out his little lungs. I wasn’t worried as I had seen many birth videos of babies needing a little extra encouragement. I could began to see the nurses and my midwife’s face start turning from a happy to very concerned expression as he still wasn’t crying. Suddenly he was whisked out of my arms to a station next to me. Roman ended up going without oxygen for 10 minutes. That 10 minutes felt like 10 hours and during that time more than 20 people flooded into the room to help Roman. Once he was stabilized (after 3 attempted intubations, chest compressions, and epinephrin) we could finally visit him and actually meet our son 6 hours later. The fear, shock, and anger that this was all happening is a feeling that I never thought would be my birth experience.
Many numbing hours later Gabe walked with me slowly down to the NICU to see Roman. He was hooked up to so many different machines that you could hardly walk around the room. Our first meeting was me taking his little hand and seeing him again, slowly blinking up at me with a face of clear recognition that I was his mom. I could see his eyes asking me what the hell had just happened. Through all of this trauma, I amazingly had this sense of calm and knowing that he was going to be ok. This was a crazy, unexpected, and unfair blip that will pass I kept telling myself. Of course the doctors were warning us that he will probably suffer brain damage and filled our minds with all of the potential what ifs. I listened but deep down didn’t feel like that was Roman’s path.
He surprised all of the doctors by showing off his many different strengths. He had a clear MRI, clear EEG, and was able to get off the ventilator and later nitrous oxide and oscillator way faster than anyone had thought. Oh yeah, and before we got to experience all of this great news, the second time we came to see Roman after the first night, he had an event where the room flooded yet again with nurses and doctors. He had developed Pulmonary Hypertension that was shunting blood away from his lungs. We later learned that this was one of the worst cases of Pulmonary Hypertension they had seen in years. HA!
A few days before we were going to be discharged after some routine blood tests, the doctors noted that Roman had very low platelet levels and that his platelets appeared to be very small. This confused the doctors so they ended up calling a Hematologist at Children’s Hospital in Denver for a consult. This is where Roman’s second health journey begins.
Due to his dramatic birth and NICU stay, the doctors were able to diagnose Roman with a rare genetic blood disorder called Wiskott-Aldrich Syndrome or WAS. A syndrome that affects 1 in a MILLION boys. Yes 1 in a million. This syndrome varies greatly in each case but is a blood disorder that causes low platelet levels, easy bruising, bleeding, eczema, and severe immunodeficiency. Turns out I was a carrier for this and had absolutely zero idea. Roman’s diagnosis then began to illuminate the “mysterious” illness that my dad and uncle had suffered from when they were kids and now to this day. Thankfully my dad has been pretty much been unaffected by WAS in his adult life. My uncle has had some more challenges.
We’ve been able to slowly process the diagnosis but now we are having to process the treatment for this disease. The only treatment option for Wiskott-Aldrich is a bone marrow transplant. And with that it will require chemotherapy, a six week stay in the hospital, and a new highly clean, isolated, and sterile life.
Amazingly, we just recently received the incredible news that Roman has some perfect donor matches. Undergoing a bone marrow transplant (BMT) when you have Wiskott is considered a CURATIVE treatment with a 90-95% success rate. How incredible!!! We wouldn’t be able to have this amazing news for Roman without all of the beautiful souls who chose to donate their marrow.
With this diagnosis, it sent me on a search for parents who are going through the same thing. This is how we met the Ansari’s. Jessica and Amin Ansari have a beautiful daughter, Emily, and the most adorable 3 month old son, Noah. Noah has a dramatic birth story as well and has already been battling through the more intense of Wiskott symptoms.
Unfortunately, Noah has not been presented with the same perfect matches that Roman has. A beautiful interracial family, it is harder to find a match due to underrepresentation of diverse donors. Gabe and I, along with Noah’s wonderful parents, Jessica and Amin, are on a determined search for Noah’s perfect match. We want to share and spread awareness about the importance of bone marrow donation as it is a LIFE SAVING donation. It is currently Noah’s life saving donation. The Murray and Ansari’s lives are just beginning with their little guys, please help us find Noah’s match so his life journey is a joyous, adventurous, and a very, very long one.
All details are linked below about the Be The Match organization and how you can become a donor. It is a much less invasive and scary process than you may think. Please, please read on. Roman and Noah and countless others need this life saving donation. Thank you taking the time to read our story.
LET’S FIND NOAH’S MATCH!!!!!!!
With love and so much gratitude,
Caitlin, Gabe, and Roman
A much easier process than you may imagine!
Visit Be The Match to learn about the logistics of this life saving donation.
Learn more about what a bone marrow transplant is here.
Click on Noah’s specific link to see if you could be his match!
***(It will not appear to be a link for Noah, but when you fill the needed information in it will connect you to the correct spot)