Lately (Day 47-65)

The first few pics were supposed to go with the last post… just the amazing friends, hospital staff and family that we have.

These next few pics were taken right before the transplant. They are some of the most treasured pictures that I have. Taleah loved every minute of it. I love seeing that bald head and it brings an overwhelming amount of emotions. 

It has been a roller coaster as usual. Scott was able to spend a little over a week up here with us and it was wonderful to be a family. It is always more stressful when Taleah doesn't feel well. She started feeling better the night before he left and it made the week without someone staying with me much more bearable. She was almost back to herself at times and I was more than thrilled. She was taking selfies, dancing, making up cheer routines… which are things she used to do. I can't even describe how happy I was to see some of her spunk coming back. I mean this happened about 4-6 hours of the day which was a huge improvement.

The labs are continuing to look pretty good. It seems as though things are on track. She doesn't love going to clinic except for the crafts that pass by the time. Her broviac line has been giving us some trouble. It doesn't always want to draw blood, which is a problem. It seems like we have been trying everything to get it to draw. We just need it to cooperate. 

Taleah also had her first lumbar puncture post transplant. She handled it pretty well. They found some white cells in her CSF, tested it for leukemia cells and luckily they were not. They explained to me that it was inflammation in the spinal column and it was very common. They also told me that we would not be continuing these LP's due to the white cells. I am not sure how I feel about that, but apparently it will do more harm than good. When I told Taleah that she didn't have to have any more, she replied, "They really don't bother me, but I just hate the bandaids." Good for her and sad that they don't even phase her anymore. 

I left to Saint George for the weekend while she stayed with my aunt and then my mom. She was thrilled to spend one on one time with them and informed me that she needed a break from all of us. Ha. I needed to move Slade back so that he could start pre-school and soccer and feel "normal".

It felt so good to be in STG. I loved being at my own home. I miss it so much. It didn't feel right because Taleah wasn't there, but it was a great reminder of how much I want to be home with my little family. All 6 of us. Soon enough.

I must say that Taleah was a little heartbroken when she saw all of her friends going to kindergarten. She asked me why she had to get cancer. I hate when I don't have an answer for those kinds of questions. I decided that we would have "kindergarten" at our apartment. I have a few supplies and I can play pretend. She enjoyed getting "ready" and came ready to learn. It lasted about 20 minutes because her energy level has been going back down. It was a moment I will never forget as a mom. I want her to feel normal but I am not sure if that helped or made it worse. 

She is such a sweet girl and it totally sucks that she can't be like the other kids. Just a little slap in the face that cancer has total control of our lives. Ugh. Not for long though… that's what I keep telling myself. We talk about the things she will do once we get back and the activities that she wants to be a part of. I keep trying to give her things to look forward to. 

The past few days have been rough. Slade started preschool and I was SO sad that I couldn't be there to take him. I feel like that is my job and I can't do it. Scott was able to take him and I know Slade loved that so it is really nothing that I should worry about. Aside from why I was having a rough time, Taleah is really having a rough time. She has been fatigued, nauseous, and throwing up. I feel like we can't get caught up on the fluids and eating and we have fallen too far behind. Luckily, we have clinic tomorrow and hoping some fluids will do her some good. She is losing weight and it is hard to see her just skin and bones. I miss her little chunk. She can hardly even get up to go to the bathroom. It seemed as though we were headed in the right direction and now it feels like we have taken 5 steps back. 

We do dressing changes at home once a week… and I pointed out at clinic last week that her line has been slowly sliding out of her chest (it's not supposed to do that). As I was changing her dressing, I noticed it had slipped even more. Well, when I turned to grab the new dressing to place on… I looked back and her line is slowly coming out. I immediately stopped it, but didn't know what to do other than put the dressing back on. This is something we will definitely address at clinic. I don't even know if it is in the right place anymore. Ugh just one more thing to stress about. 

Today has been rough so I am feeling a little down about things. We still have a good 40 days up here. We will be doing her bone marrow aspiration on September 10 (day 85) and it will take about a week to get those results. Those results are key in telling us if the transplant is working/as worked. We would love for it to be 100% donor, but only time will tell. If things look good, then we can come home. I am trying to focus on getting us there. I miss Slade. I miss Scott. I miss my jobs. I miss being a family. But this is all worth it if we can cure Taleah and have our happy, healthy girl back. 

Positive thinking.

 Rely on Miracles.