Friday, April 11, 2014

Day 14-16

Taleah has been in pretty good spirits the past few days. I cherish those moments more than ever.
I had the chance to fly home to STG for 24 hours. Slade was home and I couldn't wait to spend a little bit of time with him. Ryan and Donelle (the owners of the cheer gym I coach for) bought me a ticket to come and be a part of the "team placements". I absolutely love coaching so it meant a lot to be there and be a part of it.
Slade greeted me at the airport with flowers and lots of hugs and kisses. I LOVED it! Leaving him was difficult and he told me that he wanted me to stay at home with him. Just about broke my heart.

 Taleah was thrilled to end up with a t-shirt from tryouts and wanted to make sure that I put her on the mini team. Ha. She hates to miss out on anything.
We were talking later that afternoon and she mentioned to me that she needs to get better before May. She said she has her dance recital and a special song to sing for school. She told me it was a song to her family and it was very special. Oh and my brother's wedding.... she said it will be fine if she is bald and she can't wait to see it all happen, Taleah made sure that I knew May was a busy month for her so we needed to make sure that she was better. Ugh... I didn't have the heart to tell her that she probably won't be doing any of that. I wanted to cry... and then scream and it made me feel horrible that she will miss it all. Yes, it is all silly things that really don't "matter" in the end... but she wants to be a part of all of it and I am not sure how to break the news. I wish I had control over it all, but I am continually learning that I don't.
Her hair is officially falling out. I gave her a bath last night and the hair kept on coming. We have decided to wait for Slade to come up and then we will shave them together. I keep pointing out the good things about being bald and I feel like she is accepting it. However, I couldn't help but think it was probably the last night I will comb her long hair for a while... AGAIN! It is so superficial but she was working so hard to grow it out, but I do love those bald heads. It is something special.

Taleah received another Lumbar Puncture and a triple dose of intrathecal chemotherapy. Along with vincristine through her PICC line. Oh and we can't forget the 5 day pulse of steroids we have started. And they are full force. We received the news that her CSF is clear. That is 2 in a row so that is great!
Side note... they needed our room for a different patient so we were moved to a BIGGER room. So this room is no longer.... and I am not sad about it.


We met with the bone marrow team yesterday. It was a lot of information and very helpful. Here is the tentative plan...
We are hoping that Taleah will be in remission by the end of this round (about 2 more weeks). Remission meaning that her bone marrow aspirate will show an MRD of less than 0.1%. This will be huge. If that happens, we will hopefully be home for a week or two and then back up for another round (appx 4 weeks). As long as the second round goes well and no complications, we will prepare for transplant (hoping for a week break before transplant). That will consist of high dose chemo and radiation. We will be admitted for transplant and inpt from anywhere between 25-50 days. Then another 3 months of living up here, weekly visits and staying healthy. They will let us go home 100 days post long as things go well. There are so many what ifs.. and not a definite plan. It will take about 6 months to a year to get back to normal.
New news...
The team would prefer to use Tait's actual bone marrow over the cord blood. The donor has to be at least 6 months of age, which she will be when it comes time for transplant. IF we can't get enough marrow, we will supplement with the cord blood. Talk about nervous... there is a plan and a purpose. Tait will have to pass a lengthy physical and we need to find out if they are the same blood type (they have the same HLA typing). I am slightly a nervous wreck but it will work out. It has to.
The "plan" for treatment can change so quickly. Everything has to fall into place. They explained that there is always a small percentage that doesn't work out. Yes, we understand that... 8% chance of relapse and here we are. I am trying to be positive. Lots of things to pray for. And lots of things to be grateful for.

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