Feb 20, 2010
My awesome friend Brenda went with me to take Josiah to see the doctor. She helps prick the doctors mind to think of every possible question to ask regarding treatment for Josiah. It was an especially important appointment. We finally got results of the bone marrow biopsy & aspiration. ( did you know that they drill a hole to get that ginourmous needle into your body? the needle is HUMONGOUS!!! Do you know when they do it to adults they keep you awake! MAJOR GAG!! )
Each doctor and nurse practitioner seems to have a different opinion on how Josiah is doing, what to do, and when to do it. We were told his bone marrow cellularity is up... almost 30%. To be Very Severe it would need to be around 10%. To be normal it would need to be around 50-70%. In November he was 16% so an improvement. Aplastic Anemia has 3 levels, Moderate (MA) Severe (SAA) and VERY Severe (VSAA). At the moment, Josiah is Moderate Aplastic Anemia. The nurse practitioner seemed to take the approach of "oh well, let's just keep transfusing him as he's not low enough for treatment." He has needed transfusions every 2-3 weeks. THIS ISN'T NATURAL, or healthy! Consider this.. "My son cannot survive without getting blood and platelet transfusions. How is this OK? Here is where a second opinion, me calling an expert in the field of Aplastic Anemia will come in. I will make my trip down to UCLA ASAP. When the actual DOCTOR came in I asked "so what are the negative consequences of receiving so many transfusions?" ( I mean come on, there has to be SOME consequence to receiving bi weekly transfusions) I'm REALLY GLAD I ASKED as she mentioned that the more transfusions you get, the more you antibodies you get from the wide range of people who donate the platelets. So if He's received 20 transfusions of platelets and each of those people have antibodies to certain things, then JOSIAH gets all those antibodies. The issue comes if/when he needs to get a bone marrow transplant. The more antibodies he has in his system and that he's exposed to, the more of a chance his body will reject the donor marrow. (Graft vs Host Disease) If your child has just been diagnosed with a Bone Marrow Failure Disease, please take this into serious consideration!
So, it is much better for Josiah to get platelets from only 1 or 2 people than it is from many. There are people who have offered to donate platelets for Josiah. We will need to accept the offer as it will give my son a better chance at survival than if we continue to do what we have been. It can NOT be a member of our family because if we donated the body would become familiar with our DNA and might develop antibodies to our DNA when /if he receives a BMT! (Bone marrow transplant) It gets tricky as we'll need to time it around times he is more likely to need a transfusion as platelets only last about a week. So we are kind of at the wait and see if he gets better or worse phase... yet AGAIN. They did mention getting the others kids tissue typed for a BMT just in case.
One really weird thing that happened was that me being the adoption advocate that I am, I was trying to persuade my friend who loves all things medical to foster a medically fragile child. She is a great mom and so loving and not at all freaked out by medical stuff that would gag most people. I told her how this whole thing with Josiah makes my heart break and more tender for those without parents and that have a chronic or life threatening diseases. Just then a little boy walks by and I immediately recognized him. He is one of the sibling sets i have PRAYED for! HE and his brother ages 4 and 2 are from the heart gallery. I have prayed for an adoptive home for them and asked the Lord to open doors if we should adopt them. WHAT ARE THE CHANCES THAT I WOULD PRAY FOR THESE BOYS AND THEN SEE THEM and recognize them in the same section of CHOC where my own little boy is getting treatment! A HUGE God thing, so either the Lord wants them in our family or we are to fervently continue praying for a home for them. Aren't they CUTE!!!