On October 5th it will be a year since Nora’s 2nd Bone Marrow Transplant. She is doing unbelievably. She is a miracle girl.
For the last day of school in June 2014, Nora was approved to go to school. Her doctors told us she a normal kids let her have a normal summer. So we spent the whole summer having the best summer ever!
She was allowed to go to Splish Splash, the Beach, Camp! We spent the first summer in three years doing kid things. We look back at our past three years of hospital time and cant believe how far she has come. She is even taking Horseback Riding lessons!
She has gone back to school for 4th grade this September the first time since Kindergarden. And she is loving it.
She does have one complication and that is iron overload. Because of her countless blood transfusions, she has too much iron in her liver. So every two weeks we go to the hospital—Sloan once a month and Stonybrook once a month—and she has 120cc of blood removed from her (called phlebotomy) in the hopes that the new red cells generated will go to the liver and get the iron stores there. So far she only gets tired a day or two after each phlebotomy. We are hoping she won’t need to take medication to do this.
As we look back on this site, we can’t believe we are in our fourth year of Aplastic Anemia craziness. It is a bit overwhelming. Nora can we believe just how dangerous this ride has been and how many times we had almost lost her. I can’t believe we just pushed through and I am so amazed by my little one at her perseverance and determination while being just the most joyful child I have ever met.
She’s just having fun as a normal kid. God is good.
Nora had her first two doses of radiation today. She did great. She is nauseous and tired but was a champ. She stood perfectly still and it went smoothly. Last time I gave you an update, she had two donors to choose from… but in the meantime a new donor — who is a better match, who can donate marrow, is younger, and can donate earlier — was found. 🙂
She has nine more trips to radiation in the next three days, then she gets a day off. Sunday and Monday are chemo days, Tuesday she starts cyclosporine and her transplant is Thursday. Which will be followed by methotrexate and filgrastim the next two weeks. Then we wait.
Our lives are topsy-turvy right now and we really appreciate all the prayers. Thank you for being such wonderful kind caring friends and family.
I was writing Nora #23 (below) when we got the great news. Nora is making blood and her platelets are now normal! She has a ways to go for white/red cells and neutrophils, and is still very susceptible to germs, BUT Nora is out of the hospital and in the Ronald McDonald House!!!! Happy Father’s Day to Shawn!!!!!
The good people at the “Francis Pope Foundation” have been paying for her stay and have just given us the biggest piece of mind knowing that she is in a safe environment and we don’t have to do the 4hr long commute from Mastic Beach to Manhattan everyday when she needs a CBC.
Best of all, she loves it there! The RMcD House is wonderful with tons of activities and sponsored dinners, which have a neutropenic menu option. They have every activity from the hospital but even better… they have an outdoor terrace complete with blooming flowers!
Please continue to pray for her. She cannot get sick if her transplant is to continue as well as it has been. Thank you so much!