I'm so glad that the steroids have come to an end. They are always a real joy. I always feel like I'll never get my girl back, but then she always comes around.
Her hair was continuing to fall out and make a mess everywhere. I had big plans to make the "buzz party" a success, but the steroids and chaos of my sweet little family made that near impossible. She was on edge... And I may have been too. We ended up rushing it and just getting it over with. She didn't really act like she cared that much. It would have made it much harder to do it had she been devastated to cut it, but her hair was everywhere and she was sick of it being all over everything. Slade was a trooper and went along with the idea. It was his idea to be like Taleah. Pretty sweet.
We were so excited to get the last chemo day of round 1 done. She did great with the LP and came out of sedation pretty fast. The spinal fluid was clear again which I was very grateful for. Now... we wait. We wait for counts to come up enough to go home and then wait some more for them to come up enough to do the bone marrow aspiration. The aspiration that this entire first round has been for. I am a nervous wreck about it. Again, it is out of my control. When am I going to accept that?!
Luckily, she is loving the bald head. She says it is great because she doesn't have to wash it and now the babies can't pull it.
I will admit that we were a little sad to be missing all of the Easter festivities. Of course I didn't show it because I didn't want Taleah to feel bad. However, we made it pretty fun ourselves at the hospital. She wasn't supposed to leave her room when a lot of people were in the halls so we waited until evening to do an Easter egg hunt in the halls. They loved it. We were able to have one of their cousins up to be a part and I think that really made her feel "normal".
My mom went to a lot of trouble to make Easter Sunday feel "normal". We took the kids down to the 3rd floor for church and I cannot even describe the spirit that I felt. There were all sorts of people with their own trials. The sweetest kids and I couldn't hold back the tears. We were not the only ones feeling overwhelmed, burdened and experiencing trials. There are so many and we were all in a room and it was a giant confirmation that God loves us and is watching over us. It really was such an amazing 30 min of undeniable feelings of love. We had an Easter egg hunt on the patio of the 4th floor, opened presents from Grammy and tried to enjoy each others company. I won't lie... it was still stressful at times... imagine all of us in one hospital room. And let's not forget that 3 of them were babies. I still loved that we were able to be together because it hasn't much in the last month.
(this sums up a lot of the day)
Visitors at the hospital are tough. We love having them but it's a lot of trouble for them to come. And they have to be healthy and follow good handwashing to try and prevent the spread of germs. Taleah has LOVED when some of her closest friends have come to play. It really does make her day!
There is one girl in particular that Taleah has loved getting to know. Her name is Cami and she has been through the same thing as Taleah. She is 6 months post bone marrow transplant and has been a huge resource to us. Her family gets is, Cami gets it and knows how/where to be careful when playing in the hospital room. She has been showing Taleah the ways and what fun things she can do.. as well as playing tricks on the nurses. We look forward to lots of playdates with this cute girl. (I must say I have enjoyed her parents, as well as lots of other parents and they have been a giant resource to me as well).
The waiting game is rough. We wanted to get home for a break so bad. It was becoming extremely difficult to keep her entertained and I was running out of ideas and she was losing patience. She wanted to make a music video that was similar to the video that Uncle Taylor made for her. ( https://www.youtube.com/watch?v=R6cYH1XKjKg )
It was all her idea and I loved it. I felt like she was back!!!
We finally got the news we could pack up. (We had a false maybe we could go home so I could hardly believe it) I think we were both ecstatic!! We had lots of people help us get ready to go. It took about 6 hours to get everything in order to leave. I was a little nervous to leave because we had been in constant care of nurses, but I knew we could handle it.
There was a lot of work happening at home. Friends/family were putting together a new room for Taleah. They had spent a lot of hours preparing. Such good people. I was so excited to see it and Taleah had no idea what was coming. Also, we had awesome friends/neighbors/ward members that cleaned our house to get it ready for her low immune system.
She pretty much loves it. A lot!!!
Being home is amazing. I still feel like we are depending on so many people to function, which I don't like but am so grateful for. We have such amazing families that have dedicated their lives to help us. We are SO grateful, but I am an independent person so it has been an adjustment for me. That doesn't mean that I am not grateful... just adjusting.
Being under to same roof means more than it ever has. Bike rides outside, playing games and just hanging out. I love it all. We are headed up on Monday for the bone marrow aspiration. I am trying not to let it stress me out. It will be fine. Taleah is a rockstar.