Bone Marrow Transplant
Donation protected
Lincoln is going to have a bone marrow transplant in the next few months. In order for us to be with Lincoln, we will have to miss work and take pay cuts, adding an additional financial strain along with the emotional one. In the next few weeks we will be choosing his transplant center and the best option for a successful transplant for him may not be local, providing additional expenses such as travel, lodging, meals, and insurance potentially not covering all of the transplant.
Lincoln has Shwachman Diamond Syndrome, a bone marrow failure disease, that makes him prone to MDS and AML Leukemia, which can develop suddenly during bone marrow failure. Making it a time sensitive procedure.
We have conferenced with experts at Texas Children’s Hospital and experts experienced transplanting SDS patients at Boston Children’s Hospital and Cincinati Children’s Hospital. We are getting a formal second opinion from Seattle Children’s in October as well. They have a special clinical drug trial that looks promising for Lincoln. We are doing are due diligence to make the absolutely best choice of transplant center for Lincoln. We are determined to stack all of the odds in Lincoln’s favor. We already lost one child to SDS in 2012 (our son Andrew died from respiratory distress as a result of his disease). We refuse to lose another child to Shwachman Diamond Syndrome.
He is dependent on a GCSF injection every other night to boost his white blood cells (specifically his neutrophils) to help prevent infections, and has had two significant bacterial infections since February landing him in the hospital (one happening while on GCSF). Even with the injections boosting the quantity of his white blood cells, they are not working properly.
On top of the neutropenia (low neutrophils/type of white blood cell), Lincoln has Thrombocytopenia, which means his platelets are very very low, and he has become platelet transfusion dependent. Platelets help your blood clot and prevent bleeding and bruising.
His latest bone marrow biopsy showed increased cellularity, which is unusual and concerning as he is producing more cells in general but very few amount of the cells that make white blood cells and platelets.
Transplanting SDS patients is delicate, as their organs are delicate and they are prone to life threatening complications as a result of the chemo therapy and post transplant medications. SDS patients typically do not undergo transplants preemptively or without a solid need for this very reason. However they also have the best chance of success when they are stronger and have not yet progressed to MDS or AML.
Thank you so much for your support. We are scared but have faith that we will be able to get Lincoln the very best care possible.
Lincoln has Shwachman Diamond Syndrome, a bone marrow failure disease, that makes him prone to MDS and AML Leukemia, which can develop suddenly during bone marrow failure. Making it a time sensitive procedure.
We have conferenced with experts at Texas Children’s Hospital and experts experienced transplanting SDS patients at Boston Children’s Hospital and Cincinati Children’s Hospital. We are getting a formal second opinion from Seattle Children’s in October as well. They have a special clinical drug trial that looks promising for Lincoln. We are doing are due diligence to make the absolutely best choice of transplant center for Lincoln. We are determined to stack all of the odds in Lincoln’s favor. We already lost one child to SDS in 2012 (our son Andrew died from respiratory distress as a result of his disease). We refuse to lose another child to Shwachman Diamond Syndrome.
He is dependent on a GCSF injection every other night to boost his white blood cells (specifically his neutrophils) to help prevent infections, and has had two significant bacterial infections since February landing him in the hospital (one happening while on GCSF). Even with the injections boosting the quantity of his white blood cells, they are not working properly.
On top of the neutropenia (low neutrophils/type of white blood cell), Lincoln has Thrombocytopenia, which means his platelets are very very low, and he has become platelet transfusion dependent. Platelets help your blood clot and prevent bleeding and bruising.
His latest bone marrow biopsy showed increased cellularity, which is unusual and concerning as he is producing more cells in general but very few amount of the cells that make white blood cells and platelets.
Transplanting SDS patients is delicate, as their organs are delicate and they are prone to life threatening complications as a result of the chemo therapy and post transplant medications. SDS patients typically do not undergo transplants preemptively or without a solid need for this very reason. However they also have the best chance of success when they are stronger and have not yet progressed to MDS or AML.
Thank you so much for your support. We are scared but have faith that we will be able to get Lincoln the very best care possible.
Organizer
Savannah Leigh Lillywhite
Organizer
Beaumont, TX
