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 brought us to the wrong floor...this is the pediatric cancer unit...why are we here for a nose bleed?". Over the next three days Cruz received 3 transfusions; 2 hemoglobin and 1 platelet. Cruz also tested positive for influenza A and therefore many of the "tests" had to be postponed until the virus ran it's course. Fast forward through weeks of not knowing, 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. Further diagnostic test results were needed to help in determining the first course of treatment and for the next 6 months Cruz remained on supportive care...isolation, blood counts every 2 days and transfusions as needed. In late February we also started traveling to Children's Hospital of Wisconsin under the care of Dr. Dave Margolis. We are constantly amazed by our son's character. 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".
The following sites provide detailed information about Aplastic Anemia:
Along the way we learned that Cruz has an uncommon HLA typing and at this time does NOT have a bone marrow match. Cruz was born in Guatemala, and unfortunately the Hispanic, African American, and Asian populations are not greatly represented on the registry. To learn more visit http://bethematch.org/Transplant-Basics/Matching-patients-with-donors/Why-race-and-ethnicity-matter/. 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:-)
We count our blessings daily that Cruz is currently stable and living with moderate Aplastic Anemia. Medically, the improvements Cruz has experienced without therapy or transplant are extremely rare. It has been with the support of our family, church community, and friends that we have walked through each day with faith, hope and courage. We could not imagine going through this without you.
Much love, The Colvin Family