Monday, September 15, 2014

Day 79-91

Well, to say that we are anxious to hear the results would be an understatement. The waiting game is intense. They told us 5-7 days. We have heard some of the preliminary results which included the great news of clean/cancer free bone marrow and cellularity of 90% (active cells in the bone marrow-average at this point is 30%). That was really great to hear, but the big tests take longer and will determine our departure. More importantly than our departure, it determines the success of the bone marrow transplant. The hard work, sweat and tears of the last 6 months. Kind of a big deal!

Taleah has been feeling pretty great. I feel like the fatigue has improved a lot and she is really hard to keep entertained. She is constantly wanting to help with the twins and is pretty much bored of me and everything about our life right now.
Sadly, cancer has made her think that she has to have someone with her all of the time and be pretty much entertained 24/7. That is not real life, but in her mind it is because it has been that way over the last 6 months. Slade has experienced similar things because he is constantly passed around to be cared for and I think everyone feels bad for his "not normal" life (I totally do).... so he gets a way with a little more... or just gets all of the attention.... either way he hasn't had to portray much patience, sharing, entertaining himself.
I am documenting this because we are experiencing this firsthand as Scott brought Slade up to surprise us for this (hopefully) last week up here. Taleah had been asking for Slade and I had been missing them like crazy. It has been great to be together, but we are realizing that they haven't had to share with each other. Schedules are a little messed up. We are just not our "normal selves", which is understandable. And things just need some work, routine and normalcy.
It makes us even more anxious to be home as a family, practice patience, routines, love, ect. It has been so long since we have had our family under one roof. I realize that I sound really desperate, but I am. I have just about had it with all of this and want to have my little family home. I want Taleah to be able to put this all behind her and move on with her life. She is SO ready.
The endless amounts of people that are bending over backwards for us is so humbling. I can't even begin to name them all for fear of forgetting someone. I receive text messages all of the time of people letting us know of special prayers and fasts on behalf of Taleah and our family. It means the world and I seriously want to cry almost every time I read one.
Wednesday can't come soon enough.
Praying for good news. 

Thursday, September 4, 2014

Day 66-78

Time seems to moving faster and it probably has to do with the fact that she is feeling a little bit better. She has been such a good help with the twins and constantly asking what she can to do help. 

I was able to take a 48 hour trip to Saint George to see Scott and Slade because it had been a few weeks. It is hard not being together and not being "home". It was much needed. We have sweet friends that bought me a buddy pass to St. George so I was able to fly with one of the twins (I'm not brave enough to take both). Tait is a little less maintenance so she won the ticket home (sounds horrible but it's true).

Scott and Slade were able to drive us back up to SLC and spend some time as a family. That was the most needed and came in perfect timing. Honestly, when Taleah isn't feeling well she only handles Slade in small doses. This time she was feeling so much better and they got along so well. Such a simple thing, but it made me tear up every time I saw them playing, hugging or any kind of interaction. Cancer will do that to ya!

We have been "apart" for almost 6 months. It has been a giant challenge on top of cancer, stress, financials, ect. To say that it's been easy, we get along perfectly and love the lessons we are learning about marriage and life.... would not be true. To say that we have grown, learned communication, built a stronger foundation for this family would be accurate. I have learned that I am pretty lucky to have a husband that loves me, loves our kids and wants to learn and grow from this. I have learned to do a lot without him, but when he is here I realize how much I really need him and want him all of the time. 
 The family time was amazing. I loved every second of it (even the high maintenance twins). Taleah said multiple times, "I like it so much better when our whole family is here". Amen sister. 

I feel like Taleah is almost back to normal. I was able to bring her cheer uniform back up and she was in heaven. She hasn't wanted to dance much and definitely not tumble. When she put the uniform on, it was like it all came back to her! It was hilarious and awesome.  

Taleah had clinic and was determined to climb the stairs instead of ride the elevator. This is four flights of stairs. I didn't think she could do it. You would have to know that this is only our second visit without the stroller. A lot of our appointments have consisted of the stroller only and carrying her to the bathroom, ect. This was huge and I got teary eyed watching her climb those stairs with determination. (I am normally not super emotional but this dang cancer may have changed me a bit)

It was seriously a reunion at clinic that day. We saw so many friends, visited a lot and felt really comfortable being there. The nurses even brought out pics from her first Halloween as a cancer patient there (almost 3 years ago). Kind of odd how that happens and you end up knowing more people than not. Odd... but great!

Her line is working and holding strong. We have her bone marrow aspiration on September 10. We will not have the specific, most important results until the following week. It will be a long, painful week of waiting but nothing I can do about that. Her labs are looking good so far. Her marrow appears to be growing at a steady rate. IF everything looks good and she is 100% donor then we can come home!! We will still be going up for monthly (possibly bi-weekly) visits, she still won't be able to attend school and we will still be cautious with the immune system but we would be HOME!! I don't want to get our hopes up, but I really hope everything is working and we can be here as a family. This experience has really opened my eyes to what is important and really  matters. Life is a crazy thing but we are ready to live it!
Taleah is a rockstar along with all of the other kids. I wish I could convey the love I have for these kids and what they go through. September is Childhood Cancer Awareness month and I wish Gold was as popular as pink is for breast cancer. I plan to give back  and bring awareness when I have a little more energy and within me. I want to serve people and help others because let's be honest, that is all people have done for me and my family for 3 years. 
Please pray for Taleah and that aspiration next week. 
We feel the love and prayers. 
We really do.