I wanted to take a few minutes to write this morning and share some information/clarification on bone marrow transplant and blood donation/transfusion for Henley.
Thank you to everyone who has offered to donate blood for Henley's transfusions. Unfortunately, the way it has been explained to us, the doctors aren't able to accept blood donated specifically for Henley. There are two reasons for this, first we don't know when Henley will need her next transfusion. We continue to check her levels twice weekly and this will be decreased if she continues to remain somewhat stable. There have been times where we feel certain we'll be heading to get another transfusion by next week, but then with the next labs she bumped up again. This is very typical for bone marrow failure. Think of something that only works part time, some days it's good about doing it's job and other days it's not. Sometimes her red cells are mostly good ones and other times they are smaller and more fragile and don't last as long. The second reason is because it takes several days to fully screen and process blood for a donation (at least as it has been explained to me). Even though it's someone we know, or even Kyle or I - there is a preparation process that needs to occur and when it does come time for a transfusion we won't be able to wait for that process to take place.
Next, the bone marrow transplant. Henley will need a bone marrow transplant in the future, but as of today, we don't know exactly when. We do have a consult scheduled with the bone marrow transplant specialist in two weeks and will know more about that process then. At this point we have been told that when Henley consistently has two lines of blood failing, we will move forward with transplant.
So what does that mean you might ask? Our blood has three lines: red cells, white cells and platelets. Henley's platelets have been perfectly normal this entire time, but her white cells, specifically neutrophils have been non-existent until we started using medication and her red cells have also been failing (they have been assisted with transfusion). So at this point it does seem likely that we will be heading towards transplant sooner than later.
Who will be the match?? The doctors told us we will first test the twins, that will be done this week with a simple swab test. It would be great if one of them was a match for her. If they are not a match we will explore finding her a match through a donor search or possibly a cord blood bank.
We are asking people to participate in being tested at the benefit that will be taking place in New England. It's a simple swab of the inside of you cheek and it is then sent to www.bethematch.com for testing. Our journey with Henley has really opened our eyes to how many people out there are waiting for a match and maybe YOU will be that person to save a life!
We want Henley's experience to help others because so many people are helping her. So if you have thought, how can I help Henley, please donate blood and please be tested to BE THE MATCH! Even if that donation isn't specifically used for Henley, you know it will be used to help someone in need!
