It has been quite the rollercoaster. I really thought that Taleah would engraft by day 15 or 16. I feel like the doctors thought so too… she had such a high cell dose and it was from an infant… boy have we proved them wrong.
Tait and Sloan have showed their support this week. We were hoping it would bring good luck.
She has been up and down and it has been painful to watch and be a part of. She has some serious moods and I am really struggling with it. She has some happy moments but she treats most people like crap. I try not to let her get away with a lot but it is really hard. I am not sure where to draw the line.
She had a WBC of 0.1 from day 13-15. It went up to 0.2 on Day 16 and then stayed there on Day 17.
Day 18 showed a WBC of 0.5 and an ANC of 100. That is a big improvement and I am hoping that it will continue to rise. They said things can fluctuate for a few days but I am really praying that we are on the upward climb. We are slowly trying to get her to drink water and start slowly prepping for oral meds. Her morphine pump was also lowered. She will have to be on all oral meds, be eating and drinking a little and off the pain pump before we can go home.
Scott was able to come up for the part of the week and weekend. We were able to spend part of the holiday as a "normal" family (even though it felt wrong without Taleah). I hadn't been with Slade for 2 1/2 weeks and it was so great to be able to take him to do something fun. It was a fun filled day!
I hated going there without her but needed Slade to feel normal. We continued on with the night time festivities and had a lot of fun. But again, it just felt off without her. I couldn't help but worry and think about her most of the time. Even though she hasn't been liking me for the past couple of days, I still missed her. She spent the day with aunt grammy and played and played. She spent the evening with Tabes and crafted away. I felt better leaving her with people that she loves and adores.
I think she is taking her frustrations out on me and that is ok. I am pretty sure she is over all of this and just wants to feel noromal. I don't blame her but I know we have a long way to go.
It is so hard to explain the emotions that you experience during a trial like this. It is hard to watch life go on as normal for everyone else. I love seeing others having a good time, but sometimes it makes me miss the life we used to have. However, I hate when people don't want to talk to me about the great things happening in their lives because they don't want to make me feel bad. I know all of the other cancer moms understad how I feel. It's hard to put into words. Mostly, you just want to feel as normal as possible amongst all that is happening. And it is difficult for someone to be "normal" to us for fear of saying something wrong when we are in such a sensitve state. I guess it basically goes back to wanting things to be how they used to be… and that will never happen. This entire cancer journey has changed me, it has changed us and we will be forever a part of this cancer world. We have learned so much and grown a lot and I know there are things that I would have never learned any other way. It's a crazy ride, but I am grateful for the people that are taking it with us. We wouldn't survive any other way!
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