Sunday, April 27, 2014

End of Round 1

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. ( )
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.

Friday, April 11, 2014

Day 17- Steroids

Seroids full swing. Here we go. Ugh.
Last night I spent about 2 hours searching for Fritos. Yes, that's all she could think about and all she wanted. We couldn't find them from any floor, vending maching, the U hospital, anywhere!! I had about 2 people helping me for over an hour. I prepared 5 different "dinners" and there weren't any that were good enough. It's only day 3 of these steroids... so a good 3 days before they are out of her system. We can do this. She received another chemo today (PEG). The remainder of this round will consist of another LP, triple dose intrathecal chemo, and Vinc through her PICC. We will wait for counts to come up and then come home for a week break.
I had an overwhelming amount of gratitude today. We got call from Elder Holland's office saying that he would come and visit us. He was able to come for about 30 minutes and it was very special. There are things that I will keep private and journal for my family to have/read. However, I must note that he is an amazing man. The spirit I felt was undeniable and emotional. He was able to give Taleah and Tait a blessing and it was something that I will never forget. I know that sweet little Tait signed up for this journey and I am so grateful that she did. I am grateful that I had the twins. I am feeling grateful for a lot of things. Amongst an ornery Taleah today, I still feel blessed. I feel an overwhelming sense of peace regarding this bone marrow transplant.

We have a lot to be grateful for. 

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.

Monday, April 7, 2014

Day 9-13

Things have been fairly low key, which is great. She has actually been more herself and had energy. It's amazing what those blood transfusions can do for these kids. I can't even tell you how amazing it is to see her personality coming back.
I have been struggling with my feelings regarding my other kids. I feel very blessed to have so many people that love us and our family. They are well cared for and it makes a big difference.
We will continue to do what we are doing and try to feel "normal" and be "together".
We have been expecting the news about the siblings next week.
We decided that Tait missed the curtain call initially (miscarriage before twins) because she was talking too much. We are so glad that she decided to join Sloan for the party. It looks like Taleahs "mini me" is a match. They will now test the cord blood to make sure it is a good sample and will work for the transplant. Please pray that the cord blood will be a good sample and that we can move forward towards a transplant.
Don't believe in miracles. Rely on them.
There have been so many people serving us. Bringing dinners, bringing treats, sending gifts and words of encouragement. We appreciate it more than you know. Treena (aunt grammy) has been very entertaining. Taleah adores her and enjoys her company. Now that she is feeling well enough to party with her, she is requesting a lot of her time.
One thing that Taleah has wanted to do before her hair falls out... have it "light" like Elsa. I figured it was a valid request and we would make it happen before we shave her head. Treena came to the rescue and made her dreams come true.
Having Slade here when she is actually feeling pretty good was much better. They were happy to see each other and enjoyed each others company. It made my heart so happy. She could only handle him for a couple of hours... just like they are at home. Some things never change.
This week she will have an another lumbar puncture, chemo in her spine and through her PICC line. Oh and let's not forget the steroids. We start those on Wednesday.
We also meet with the bone marrow team to discuss pros and cons, the cord blood and the plan. I am extremely nervous but hoping to get some answers and some peace of mind.
What a long journey we have, but trying to be positive and take it one day at a time.

Wednesday, April 2, 2014

Day 8

Taleah has been extremely tired and having a hard time sitting up. She wants to lay down and watch a show, which is not like her at all. The sad part of it is that she doesn't even really watch the show, but just stares. I have tried offering games, coloring, any type of distraction but the noise and energy of it all makes her upset. I miss my spunky girl.
She received another platelet transfusion before her LP today. Her appointment was at 1pm so she had to fast all morning. She did a pretty good job with the procedure and recovered fairly quickly. And I think I have found the right combination of meds that reduces her nausea after sedation by a lot! We were anxiously awaiting the results of the CSF because of the 6 leukemia blasts they found last week. The sample contained 32 cells and they said that none of them were blasts so that is great news. We will test again in 1 week in hopes that it will have the same result. She did receive an extra 2 chemos intrathecally, so we will see how that affects her. She also received some chemo through her PICC line.
Her immune system is officially down. We will need to be very cautious due to her lack of ability to fight any type of infection. She will also receive a blood transfusion tomorrow in hopes that she will gain some energy and lose the headaches.
We will hopefully find out if the kids are a match in 1 week. The anxiety just might put me over the edge, but I just have to remember that it is out of my control. That is a lesson that apparently I still haven't learned.
I must say that I am grateful for the small things though. We have had the twins at the hospital for 4-6 hours a day. We have laid down a mat and let the babies play. Taleah has loved having them there and I think it has been therapy for her. I have been worried about missing milestones for the babies. Sloan made a point to roll over at the hospital when I was playing with him. Tait had previously showed him up and now I got to see Sloan do it. It sounds silly, but those are the things that I want to be a part of. I am still struggling with how I will find a balance in all my kiddos, but I need to trust that it is going to work out.
We are so lucky to have amazing people behind us. It really makes a difference. We feel very blessed to  at least have that much to help us through.