Please take a minute to read....December is Aplastic Anemia awareness month. On April 12th of 2011 our Jonathan was officially diagnosed with Severe Idiopathic Aplastic Anemia. He was only 4 years old. What is Aplastic Anemia? It is a bone marrow failure disease. It is an autoimmune disease and it is a disease that is very life threatening and very serious, especially to a child. It is a disease in the Cancer family that is not cancer but can cause cancer to surface through just by having the disease and also through the medication and treatment needed to battle the disease. There is no cure for Aplastic Anemia. The Severe part means that Johns life depended, at that time, on many transfusions to help keep him alive...he was unqualified for a bone marrow transplant (the only cure) as his brother was not a donor match and Johns pathology revealed irregularities in the nature of some of the elements in his body (different components of his immune system) that were very unique and contradictory to what they should have been for a person suffering with this disease...so much so that his doctor did not want to fix what wasnt broken in his body and so we had underwent two rounds of ATG treatment. This was done to mitigate the severity of his disease and so he also had to live a new normal which included taking powerful immune suppression medication called Cyclosporin to quiet the combative forces in his body to allow his bone marrow to reset, regroup and recreate the cells once more. This meant also that Johns immune system was completely compromised and his situation much, much more delicate. Not only was his body working very hard to try and make the necessary blood cells and platelets everyone needs to survive but any sicknesses or falls he could suffer could have very severe consequences....and hospital stays were very much apart of our lives at that time. In the beginning John and I stayed almost an entire month and for the first two years we spent weeks at a time visiting the Blood and Bone Marrow Transplant Unit of A.I. Dupont and spent time apart from our families, friends and we even enjoyed Christmas Day inside the walls of the hospital. A picc line transplant and then a port transplant, having to wear surgical masks everywhere and yearly bone marrow transplants, many, many needles, much of them very painful and a very brave little boy who fought harder than anyone I have ever seen and today despite all, the child who was feared to never live with platelets above 75,000, a child who needed to be protected from falls and diseases and virtually almost everything for 3 years is now IN REMISSION! Our little boy is a survivor like all of his other A.A. friends and these children and grown ups need to be honored and remembered and so I wear my BRAVERY BRACELET and my RED and WHITE this month to remember and honor them all. They are all braver than I could ever be! So please remember them this month and friend our page to show your support or to read more of his updates and stories. In my notes you can read my thoughts and facts from the last three years. And since this is the season of giving....please visit the Aplastic Anemia and MDS International Foundation and make a donation. We also have Bravery Bracelets if anyone wants to make a purchase. They are $2 each and the money goes to the AAMDS and towards research to hopefully one day find that Cure for all who suffer with this terrible disease. Lastly, if you visit a hospital this month, please take time to say thank you to the doctors and nurses and staff who work tirelessly for their patients. They fight, they cry, they laugh and they take this journey with them all. They feel in their hearts everything the family feels and they dedicate every moment to their patients and to the research that will improve the lives of their patients. We have the hardest working doctors and nurses who tended every facet of his disease for our son and we love them all for everything they have done and continue to do. We couldnt ask for a better place to have taken our child. (Cant wait to see you this month Blake Vai) Thank you and may God bless you all!
Posted on: Wed, 10 Dec 2014 18:29:08 +0000
Trending Topics
Recently Viewed Topics
© 2015