I wish I could accept that fact that cancer never goes as planned. We came home to have our "break". We planned a few fun things that wouldn't put us around many people. Lunch on the grass, carousel ride (after bleaching the horse),blood transfusion, platelet transfusion, and horse rides at the Wades. She was loving it and we were just happy to be home as a family.
She started with the mouth sores again.. so eating wasn't her favorite thing to do. It didn't stop us from having fun though.
(we were waiting for the pink cowboy boots... and Grammy came to the rescue)
Unfortunately, she came down with a fever on Thur night. We rushed to the hospital and they started a series of tests. Her ANC was 0 and she was close to needing more blood.
It ended up that we stayed from Thur night- Mon evening. It was a long weekend and I think we were all a little bitter that we had to spend our "break" in the hospital. Luckily, we enjoyed the nurses and entertainment and made the best of it. We made more music videos, flipagrams and pretty much anything to keep her happy.
She wasn't herself for most of it and it broke my heart. I won't lie and say that I wasn't a little bit sad when I would see pics of everyone else "beginning their summer" and we were stuck in the hospital AGAIN. But that is no way to live!
We eventually figured out that she had C-Diff(again), rhinovirus and Cellulitis in her genital/pelvic area. That was the source of the fever. The cellulitis is extremely painful and she was miserable.
We needed to be in SLC on Tuesday for the start of many bone marrow transplant appointments. We were released on Monday evening with just enough time to enjoy some time as a family in the backyard. It felt normal for a minute.
We were sent home on a lot of different antibiotics. I had to put them in my calendar with alarms so I wouldn't forget.
We left bright and early to begin the long days of appointments. My phone was ringing off the hook from every doctors office, hospital, home health, ect. It was exhausting.
We are so lucky to be staying with some friends that continually bend over backwards for us. Taleah requested roasting marshmallows and of course they delivered. She was in heaven.
A combination of the unplanned cranial radiation (due to the leukemia cells found in her CSF), the cellulitis infection and the fever are resulting in the transplant date being moved to June 16. It will all happen on my birthday and I am choosing to believe that it is a good day because it is a start to a new, healthy life.
The cranial radiation planning session was heartbreaking. They said she is on the border of whether she needs sedation or not. I knew if I talked with her then she would be able to do it. I was on the verge of tears the entire time. She had tears rolling down her face but she held very still. I was so proud.
We also did the total body radiation planning session and she did great with that as well. As we talked about the side effects, I wanted to crawl in hole. It is all a little overwhelming and a lot to take in. However, she did way better than me and rocked it.
She also had a bone marrow aspiration and lumbar puncture. The broviac (central line) placement was delayed until the following week. The results from the BMA are KEY to moving forward. I am trying to be positive and believe that they will be great so we can keep going.
Her neuropsych test was awesome as well. She spent almost 3 hours testing and talking with Dr. Paul. They were amazed at her social skills and ability to communicate with adults. Sadly, I think she does better with adults than children and I attribute that to cancer. Her reading and math tested to be about the end of kindergarten level (That made me feel a little better).
We had to fit in a little Treena time as well. She never disappoints. Dinner and a special ball.... the dresses..the dates... the dancing... it was magical.
I am so proud of her. I feel like I am lacking energy and a positive attitude and then I watch/listen to her and remind myself that I need to step it up. What a great example of courage and faith.
We knew we got to come home for the weekend and we were SO excited. We wanted to do things that made us feel a little normal. Swimming wasn't an option, but she could put her toes in while sitting in the shade. We made compromises and had some fun. We felt kind of "normal".
The anxiety is creeping up as the transplant date is getting closer. As I signed consent for Tait's portion, I seriously wanted to throw up. It is becoming more real. It is an amazing thing and I am SO grateful that we have a sibling match but I am nervous for my baby. She is so little and she is my baby. We also discovered that they have different blood types and Taleah cannot receive Tait's blood type so it will make the transplant a little more difficult, but doable. They will have the cord blood ready too. It's a lot but we are ready. We are ready to move forward. I keep looking at the pictures that I have of the two girls, and I am reminded of the special bond they have. I know that Tait understands the bigger picture and she willingly signed up for this in Heaven. What a special bond.
There is a lot to come. A lot more prep before the actual day. Please pray for my babies.
Rely on miracles.