Tomorrows another BIG day!

 

Tomorrow Jillian goes back under anesthesia to get another bone marrow test and a spinal tap. She will be getting chemo in her spinal fluid once again, this is basically for preventive maintenance (all my military friends should know how important that is). The purpose of this procedure is to once again test her bone marrow so if by week 22 (which is when we should know if her new treatment plan is working) then we will be prepared for the possibility of a bone marrow transplant. From what I have read about these transplants it’s really the last thing we want to do. It takes about a year of recovery time and their immune system is worse than what it is now. It’s a tough road for them when a bone barrow transplant is necessary. Its our intention to be prepared for this which is why we are testing her again. As of right now William will be her best match for a transplant. His odds are 1 out 0f 4 at being a match. Daniel and mine are 1 out of 200. Any other relative that we have they said would be like testing a stranger. So we are hoping that one of us is a match otherwise finding a donor may be hard. Another thing that makes it difficult for her to find a donor is her race. I was surprised to hear this because of the amount of Mexican there are! But because she is of Hispanic decent she will have a more difficult time finding a match, this is because there are not a lot of Hispanics who donate marrow. So all you Mexicans out there go and DONATE!

Tomorrow is also Day 8 of our treatment which means she will be receiving her weekly dose of a drug called Vincristine. This is an important part of her treatment that she receives weekly for the first 28 days. The reason I am not excited about this drug is because it is the drug that may make her sick and the one that affects her hair. Tomorrow will be her second time receiving it. It’s always nerve racking when there more treatment to do than what is the usual.

The first time Jillian was put under Daniel and I were a mess! I think we will be handling it a bit better this time because they told us that she responded well to anesthesia last time so she shouldn’t have many issues this time. FINGERS CROSSED! I will update everyone on how well she does tomorrow! Another thing that has crossed Daniel and mine minds is possibly retesting Jillys chromosomes. On day 15 we are scheduled to start the experimental drug called Dasatinib, we were thinking about possibly double checking to make sure that she is indeed PH+. I would hate to start her on this experimental drug if she had a false positive on her testing. I think we will talk to the doctors tomorrow and request a retake.

We managed to get Jillian out of the room and up to the play room on the third floor today. She spent about an hour in there and played really well. She'g getting weaker each day and rarely walks because she complains of leg pain still. We try to get her to walk as much as possible but its hard to see your child is so much pain. We had a little birthday celebration with Daniel and his parents today in the room. Jilly was happy to sing happy birthday to him and we had cake. We couldnt light his candles so Daniel pretended to blow out fake candles and Jilly cracked up at that. We usually can get her out of her room if we tell her we are going to go see the train. Theres this really amazing train set up down from our room and the kids can push buttons on it and make it make a bunch of sounds. There are also some really kick ass fish tanks all around the hospital. They have put forth so much effort to try to entertain the children who are forced to stay for long periods of time. Here are some pictures of our day today from the play room, train and birthday party!

 

 

 

 

 

 THank you to the Wagners for the fun note Jillian got today.She loved it!