Searching patient, Carter, receiving a transfusion. Being transfusion dependent means that Carter now requires donated red blood cells and platelets to maintain.
To know him, is to love him. His smile is contagious. His kindness and zest for life are inspiring. His passion for sports and all things ‘boy’ are uplifting. His love for his family and friends is felt by all. Severe aplastic anemia (AA). That is what the doctors initially said. Carter, our amazing ten-year-old boy, has bone marrow failure and may require a marrow transplant. We will never forget the moment the doctors told us that our son has this rare disease impacting his bone marrow and blood. We will never forget the moment that our once “normal” and healthy family began the journey that will change us forever.
Our family went in search of answers. Carter underwent weeks of testing. We have learned the ins and outs of bone marrow failure and what the treatment options are for the particular types of bone marrow failure. Though we began with an initial diagnosis of AA, we are now in an uncertain area of bone marrow failure. Carter’s peripheral blood samples show levels in line with the severe AA diagnosis; however, after two biopsies, his marrow is not behaving like the marrow of an AA patient. This unknown area puts Carter in a watch, wait, test and see situation. Time is important as it allows us to monitor Carter’s marrow via repeat biopsies to determine if changes are occurring and leading us down the different paths to a firm diagnosis and treatment plan. Time is also important because Carter’s blood levels need to be watched closely since he has become transfusion dependent.
One thing has remained the same. A blood stem cell transplant is the only true cure for bone marrow failure. Since this topic has been discussed with us numerous times, a search of the world-wide donor database has been conducted and Carter’s brothers have been tested. Carter does NOT have a fully matched donor.
We will be the first to admit that until two months ago, bone marrow failure didn’t particularly mean much to our family. Unfortunately, before this time in our lives, we would have most likely skimmed by a flyer or a social media post without acting on it. Like anything, it is easy to do when something doesn’t directly impact you or someone you know and love. Today, our view on this has drastically changed and so have our hearts when it comes to donating. We now know how extremely important it can be to take the steps to become a donor. We are asking you to consider what bone marrow failure means to a family experiencing it and help in any way you feel comfortable. Our family needs help in our search to find a match for Carter’s potential transplant. He needs YOU, we need YOU and we know with your help, anything is possible.
The outpouring of support and love from our family and friends, near and far, has been overwhelming and is appreciated more than we can express. Until now, we have not had an answer for you as to how you can personally help us through this trying time. We do now. We need YOU to register to donate. We need YOU to encourage your friends and family to register to donate. We need YOU to help us spread the word. You could be the ONE to help our son, Carter, get back to living his life like a ten-year-old boy should.
Written by Carter's mom, Lyndsay.