Apr 17, 2020 Latest post:
Jul 14, 2021
Welcome to our CaringBridge website. We are using it to keep family and friends updated about our son Michael as he goes through his bone marrow transplant journey. We appreciate your support and words of hope and encouragement. Thank you for visiting.
I have decided to add to Michael's story so that those of you who are visiting here know how this all came about. Jim and I were so blessed to be having twins and could not wait for their arrival. That blessed day came in December of 1998. That's when our lives changed. Michael was the first to greet us. Jim and I were so excited and we were asking the doctor is it a boy or a girl? She didn't answer us so we said it again. The doctor then replied, "I don't know"? Jim and I were stunned. That's where Michael and Andrew's story with Diamond Blackfan Anemia began but we had no idea what was yet to come. The boys were born with many health issues which in turn took us to many doctor's from day one of them being born. We saw a different doctor almost every day of their lives for almost the first year. We eventually ended up down at A. I. duPont Hospital For Children in Wilmington, Delaware where we met the twins Hematologist. We met him after seeing their Geneticist who told me that Michael looked very pale and to get him to his pediatrican immediately to get his hemaglobin checked. We went to his pediatrician and they did a hemaglobin check and Michael's was at 2.3. A normal hemaglobin is any where from 12 to 14 so Michael was dangerously low. The pediatrician sent us to Bryn Mawr Hospital who in turn contacted A. I. duPont Hospital and they sent an ambulance up for Michael and took him down to Dupont where his Hematologist entered the picture. They ended up admitting him. Did a lot of testing and that is when he received his first transfusion. To this date Michael has had over 300 transfusions. After all the testing was completed the Hematologist diagnosed Michael with Diamond Blackfan Anemia. It is a rare bone marrow failure disease in which the body does not produce red blood cells. The red cells are what carry the oxygen through the body so if your hemaglobin is low you have no energy, headaches, stomach aches and just feel lousy. Michael's twin Andrew was diagnosed shortly after him. Their Hematologist sent us to see the DBA specialists in New York. After seeing them we found out that Michael and Andrew are the only set of fraternal twins in the world with DBA. They did many tests to see if they were identical but they continued to come back saying they are fraternal which shocked the specialists because it did not make sense to them. Here begins Michael and Andrew's life and how things do not go the normal way for them. All these years and all the procedures they have gone through - when the nurse says to me post op, "There is a chance this could happen but probably won't", I say, "No please tell me because it will with my son". That is just he way it is with them. So we found out when the twins were young that with DBA there is a chance for brain tumors and Leukemia. We prayed every day that we would never be in that situation but in June of 2019 everything changed. The boys had their yearly bone marrow biopsies and they came back with some strange cells. The Hematologist wanted to do another biopsy to have someone test these cells and see exactly what was going on. The cells were sent to Texas Children's Hospital where a DBA and a Leukemia specialist checked out their marrows. Michael's came back as MDS. Myelodysplastic Syndrome. Pre-Acute Myeloid Leukemia. Cancer. His twin is on the MDS scale too but not to the point of where Michael is. Michael had these cells show up in his marrow back in 2009 which then Doc continued to follow Michael very closely and check every bone marrow biopsy carefully in case they advanced. They had not until last year. So Michael's new Hematologist called and said we can not wait any longer. We have to do a bone marrow transplant because if we sit back and wait there is a chance that Michael will go into Acute Myeloid Leukemia which can be deadly. So here we are on April 16, 2020. The day after April 15, 2020 where a wonderful young man in his 30's in Germany donated his bone marrow for Michael. The cells are being shipped and will be at Dupont when Michael is ready for them. Michael and I are heading to Dupont today. He will be admitted and we are on lockdown. He is in quarantine for two weeks and then will be tested for Coronavirus. Due to the Coronavirus I am not allowed to leave his room at all through Michael's bone marrow transplant journey. My husband, Jimmy and Andrew are not allowed to visit at all. Very sad but we have to do what will keep Michael safe. If he is clear on April 30th from the Coronavirus then he will start his chemotherapy.
I will continue to update through here or you can call us to see how Michael is doing. I have attached Michael's Go Fund Me page in the Ways to Help page of this site. More information there. Please know that Tribute donations to CaringBridge are meant to support CaringBridge as a non profit organization. They do not go to the Go Fund Me. Thank goodness for this wonderful site. Please pray for Michael and God bless. Be safe.