Friday, June 13, 2014

Pre-Transplant


We started the week with meetings. Lots of meetings. So naturally we played Doc Mcstuffins at home. Taleah was a great doctor. 





The broviac surgery went pretty good. It was heartbreaking sending her off. She was terrified and crying. Of course I cried as well. She recovered fairly quickly and had to head home to prep for the cranial radiation the following 3 days. 



 She had a little panic attack before the first treatment. It wasn't on perfectly so it was really tight and it freaked her out. It took some reasoning and she pulled it together and rocked it!


Scott brought the boys up and we decided to have a few days in SLC as a family and do as many fun things as we could without getting too many germs. We went to the Hogle Zoo and the kids loved it.


With the setback, it made it possible for us to attend the Millie Princess race in STG for Taleah. I was so excited that we were going to be there and see the hard work, love and support that was shown to our family. Angel Flight was kind of enough to fly the kids and I home. Scott had a few work things to do and drove the van home. It was much quicker and great to get home for about 2 days. Oh I love STG. 


I can't even put into words the love we felt being at the race. It was amazing. We loved every minute of it!! Taleah thought it was pretty great and I am so glad that she was able to be a part of it. I wish there was a way to thank every single person.




I packed the kids for a good 4 months. It was giving me some major anxiety. I have always been someone who likes short vacations because I miss my bed, I miss the kids being on a schedule and I just miss my house. So…. this is a big adjustment and something that will take some adjusting. 
Taleah had 4 days of total body radiation twice a day. I had heard horrible things and I was very nervous. It was busy, exhausting and she did pretty well. She had one day where she threw up a lot no matter what meds I had given her. It broke my heart (Seems to be happening a lot). Overall, it wasn't horrible (minus the machine breaking and the other one overheating). 
 (Tait doensn't cuddle with anyone… except Taleah)


I must say that I am a nervous wreck. Taleah has been handling things so well and I can't seem to get it together. I am stressed about the transplant, Tait going into surgery, Taleah's body accepting Tait's marrow, the side effects, my twins forgetting me, not being able to put them to sleep, missing their milestones, Slade acting out, missing my other kids. 
It is really starting to take a toll on Slade in so many ways. He needs the interaction with kids and is missing out. I wanted to cuddle with Slade before bed the last night before being admitted to the hospital… and after a few minutes he told me he was done cuddling with me and wanted Grammy. Exaclty what I have been afriad of…. my kids not wanting me anymore and not even needing me. I am glad that they are being cared for and loved so much, but it is my job and I hate that I can't do it. Scott was all alone on his birthday and we won't get to see him a lot for the next few months and that is hard. Cancer is taking so much from Taleah, but also my entire family. I am not trying to get sympathy but I want to be real and document this entire process. The good and the bad. 


We were told to check in on Friday at 8am. She has 2 days of high dose chemo and then Sunday will be her day of rest. Monday morning will be the transplant. Tait will go into the OR around 7am, they will extract bone marrow from her posterior ilac crests and then send to the lab to process because of the blood type difference. It will take appx 4-6 hours to process and get ready for Taleahs body. We are thinking afternoon will be the transplant which will consist of the marrow hanging and then infusing like a bag of blood. The days to follow will be extremely important and exhausting. She probably won't feel well, I will be the germ police and she will be monitored VERY closely. They say that the average person engrafts between day 15-25. I hope it is fast because I keep hearing that the days leading up to engraftment are pretty awful. 


She was acutally pretty excited to come here. I am hoping we get moved to a bigger room. She keeps saying that she just wants to get this over with! I am not sure that she understands what it entails but I don't want to freak her out.






I need to look to her for strength. Mama needs to pull it together! These next few months are going to be long, hard and exhausting but hopefully WORTH IT! 
I just need to remember our motto….
Rely on Miracles

6 comments:

  1. We're praying for all of you so much! Reading this just broke my heart. You're such a wonderful mother and have so much strength! Taleah (and all your children) are lucky to have you and Scott.

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  2. Love you guys and continually praying for each of you. You are doing a great job.

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  3. She's a rockstar - you are a rockstar! Our family is praying for you all that as you walk through this, you will all be strengthened and given all that you need to endure the process of this. There is a whole world that most of us don't understand and that you are having to face, I'm sorry for the burden you are carrying and pray that the very best outcome will happen as you go through the transplant phase of this journey. We are so glad you are surrounded by such a wonderful family to help you survive this. We will continue to pray for you this week!

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  4. Prayers to everyone! Thinking of you guys. Taleah is a gem. Tait is her angel sent by God to save her. What a miracle! It will turn out just fine. God has laid out a path for her.

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  5. Reading this today 6/18/2014, and Praying somewhat of the hard part is over! Your sweet little family and beautiful little angel are in my daily prayers!! Praying for peace and for God's Healing hand to heal her!!

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  6. Reading this today 6/18/2014, and Praying somewhat of the hard part is over! Your sweet little family and beautiful little angel are in my daily prayers!! Praying for peace and for God's Healing hand to heal her!!

    ReplyDelete