On December 19, 2013 Cruz experienced an uncontrollable nose bleed. He began losing consciousness and was taken via EMS to Kosair Children's Medical Center Brownsboro. Within a few hours we were told that his blood counts, especially his hemoglobin and platelets, were much lower than what they should have been for a nose bleed. He was transferred that afternoon to Kosair Children's Hospital for further treatment and testing. When we entered 7W I immediately thought they had brought us to the wrong floor...7W is known in our community as the pediatric cancer unit. Why would they bring us here for a nose bleed? Over the next three days Cruz received blood transfusions and underwent many tests. He also tested positive for influenza A and therefore many of the more invasive "tests" had to be postponed until the virus ran it's course.
Fast forward through weeks of labs, testing and more testing...a bone marrow biopsy confirmed a rare and serious blood disease - Aplastic Anemia. Aplastic Anemia is the medical term for "bone marrow failure". With AA, the bone marrow stops producing enough stem cells to make the red blood cells, white blood cells, and platelets that the body needs. Treatment options for severe AA include immunosuppressive therapy and/or a bone marrow stem cell transplant. I had thought the day we received Cruz's diagnosis would have been the worse day of our live's and although we were devastated and confused by the lack of answers, we felt relief. Relief that now we could devise a plan to get our boy better. First and best option for treatment is a transplant from a matching sibling donor. Cruz was born in Guatemala and based on the history we were given we had a feeling he most likely did not have a full biological sibling. The adoption agency confirmed. (Side note: full siblings only have a 25% chance of being a match) Next step was to find a match through the national registry, which has 14 million registrants. We were told that the Hispanic, African American, and Asian populations are not greatly represented on the registry and not to expect pages of matches, but that they would be happy with a handful. The ATG immunosuppressive therapy is not a decision to make lightly, which is the second option for treatment. Along with the short/long term possible side effects, a plan B is needed if the bone marrow does not respond. Plan B being a transplant.
Our plan B wasn't working out so well. One potential match is what came back - out of 14 million. And then a few weeks later, that one potential become zero. This was the hardest news to handle. It still is. Our son does not have a bone marrow donor match. The only cure for Aplastic Anemia isn't available for our precious boy. Cruz remained on what is called "supportive care" - for him that consisted of isolation, blood counts every couple of days and transfusions as needed. And the wait continued, with Cruz continuing to decline. In late February we found the medical team that we would call our own. They just happened to be in Milwaukee, WI. So, we started traveling to Children's Hospital of Wisconsin under the care of Dr. Dave Margolis. When that became too frequent, we stayed. Thank God for the Ronald McDonald House of Milwaukee.
Back home, Cruz Crusade was created through a group of our friends, family and church community in search for a bone marrow donor for Cruz. They worked tirelessly holding bone marrow drives with the assistance of Be the Match. The unbelievable generosity of others is what would put us back together, mend a piece of our hearts and help us see through another day. We could never express the amount of gratitude we have for each of you.
Cruz has endured more than any parent would want for their child. When he stopped crying over labs I thought, "whew this will be much easier without him freaking out over needles". Now, I hate that he isn't scared of needles anymore...it's just another indictor of our "new normal". He continually amazes us through each day. Cruz has the ability to find the positive in most situations. And though we have our fair share of "horror" stories that were not fun to live through, at some point, Cruz would get this sly smile and say something like, "at least I didn't wake up with it in my nose" (this after waking from anesthesia with an IV in his foot for the first time - he was a bit freaked out and I'm pretty sure the entire hospital knew it!).
We came home for summer and have been able to stay with trips to and from WI. The best news of all - Cruz is currently stable and living with moderate Aplastic Anemia. Medically, the improvements Cruz has experienced without ATG or transplant are extremely rare. He is back in school and happy to be with his friends again. The transition hasn't been easy, but it is better than where we were at this time last year. His chances of continuing to improve are good and that is what we choose to focus on. The "what ifs" still creep in and when we go down that road we just hold on to each other as tight as we can. Emotionally it has been tough. To have gone through this past year and not be changed is impossible. And we are still going through it - learning our way through each day.
We encourage anyone who is able to become a bone marrow donor to please join. It only takes a mouth swab to join the registry. Cruz does not have a match, but also BIGGER PICTURE HERE...there are so many more who are in desperate need of bone marrow - who will die without a transplant. Something that we each have and with a healthy bone marrow will have plenty of to share:) And if you are not able, please help in spreading awareness. It only takes a mouth swab to join the registry and Be the Match will mail the kit to you to complete! Even if you may not be a match for Cruz, you may still save the life of someone else just as deserving:) Also check out SAM - Sharing America's Marrow http://www.sharingamericasmarrow.com. These sisters, from KY, just started a cross country journey to spread awareness and register 50,000 donors!
The following sites provide detailed information about Aplastic Anemia:
The Colvin Family
Aimee, John, Cruz (age 10), Miley (age 8) and Lanie (age 6)
Scorch (German Shepherd age 2) and Cece (newest member/5 mos old kitty)