Gracie and I left the next morning at 4:20AM for our 8:05 appointment with Dr. P, a geneticist specializing in retinoblastoma in Houston. There was a bit of a mix up and Dr. P could not come until 9AM so we had a bit of a wait. Dr. P was quite nice but really had nothing new to say. It was necessary to meet with her or else she could not order the blood tests Gracie needed to find her Rb mutation. It was really frustrating that we had to make a trip to Houston when our family has a geneticist and tons of doctors that are in much closer proximity to us. While these people could order the test, no one could guarantee that our insurance would cover it unless we went to Houston. So off we went. Dr. P did explain a few things that were unclear before. The tests could come back in one of basically four ways. They could find a known mutation, they could find a variant mutation (a mutation that causes retinoblastoma but that has not been identified previously), they could find a mosaic mutation (where some cells have the mutation and some do not or they may not find the mutation (5% chance of this happening and just means that it was hard to find not that it does not exist). I had never heard of a mosaic mutation but basically that would mean that the mutation occurred early in Gracie's fetal development but not likely in the original sperm or the egg (i.e. she did not inherit it from her mom or me). This would be very nice because it would mean that not every cell in her body has the mutation, thus reducing the chances of additional cancers or passing the mutation onto her children. There are not a lot of mosaic cases (percentage wise) but they do happen.
Anyway, Gracie spent much of the time showing the doctor how to play games or watch movies on our phone. If fact she was quite put out that Stephanie called during her movie so that the movie paused. After the appointment Gracie asked to get a hamburger from McDonalds. So we stopped in Houston and bought Gracie a Happy Meal, which she never ate, then drove home. We arrived just after 2PM so that I could pick up her older sister from school and then lay on the couch and watch a movie with the family. I guess most of them watched the movie while I slept. It was a long day but Gracie travelled well, in fact she slept through much of the trip.
Then this morning I took Gracie in to get her blood counts checked again. They are worried she will need a transfusion because her Hemoglobin is looking kind of low. Gracie has done so well at the blood clinic lately. I tell her before we leave where we are going and she is happy to come. She really enjoys most of the staff there and they know her routine. She goes to her regular spot in the back when they call and then asks for her stickers. They bring her stickers and then prepare her arm for the needle. Gracie tells them she doesn't want a poke about 10 times but still sits there and allows the blood to be drawn. She has a couple of staff members there that know her and are really good and quick. Today she even got some candy! By the time she leaves the little procedure room with her pink tape on her arm, she is back to her happy self and wishing people a Merry Christmas!
I am so happy to have Gracie and to she how well she deals with everything we put her through. We hope that Gracie's counts are good and that the chemotherapy is doing it's job- fighting her cancer!
Thank you all for your support and love, I cannot even tell you all how much it means to us.
1 comment:
I am Jayson and Rachelle Wilkinson's cousin. I've been following Gracie's story and just wanted to tell you that we are praying hard for Gracie at our house. We wish you a Merry Christmas and blessings of health in the new year.
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