We had Macy's first hematology/oncology appt. today. She got a full blood workup and her numbers look good....no sign of bone marrow failure yet so that is good. Macy did so great....she cried (of course) when the needle went in but by the time the Dr. came in she was already calm and playing with her toys. The Dr. said her numbers should look good for a couple of years before we need to start worrying. I hope that's true. We scheduled for her first bone marrow aspiration to be done in about 4 months. This is where they stick a needle into the hip bone and suck out bone marrow to test for signs of cell damage and leukemia. This will need to be done annually at the least.
We found out that they will not do a bone marrow transplant until she is in complete bone marrow failure....I was a little un-easy about that. I know there are many risks with the transplant itself; but to me it makes more sense to do it when she is somewhat healthy still.....not in complete failure. But oh well...there is nothing we can do about that except make sure we have a donor lined up for her so when the time comes it can be done quickly if needed.
They are not going to do her HLA type testing for a while because they need at least 10ml of blood; and that is A LOT of blood to take out of a baby so we need to wait a while. Once it is done we will get the results within a week or two; so we will probably do it whenever we find out what complementation group she is in (6months-1 year from now).
We are canceling the xray she has scheduled of her spine. There are no concerns at this time; it was just one of those things we were checking so all of her systems were checked. This was scheduled before we knew she had FA; and she cannot have xrays anymore or CT scans due to her very high susceptibility to many cancers. I wish we knew this before she had all of her xrays and live xrays done before.
Afterward we went to Red Robin for lunch and Macy was soooo cute in the little highchair at the end of the table. She LOVED it! We will need to take her out to eat more often. She wore such a pretty green dress today with little white polka dots, a white cardigan, and a pink ribbon in her hair! So cute!
On a side note: She has had her NG tube out for 9 days and she is doing pretty good "dream feeding". She has started eating 3 and sometimes 4oz. at a time. This is a big deal since before that she would only eat 2 to 2.5oz. at a time since she got out of the hospital in the beginning of March. I really hope she continues to do well so we don't need to the put the tube back in.
I am hoping we can go out and enjoy this beautiful day we have. I am blessed that my husband has such a great and flexible career that he is able to work from home when needed, and come to these appointments with me and Macy! Macy's upcoming appointments are June 6th with her Hand Surgeon; June 8th with Nephrology (kidney and heart ultrasounds); June 9th with Feeding Therapy; and June 17th her 9 month well-child.