Monday, June 23, 2014

Day +5 to +7

I had been feeling "sorry" for myself that I couldn't be with all of my kiddos. Taleah seemed to be getting worse and I figured I would be at this hospital for the next month or so without seeing the rest of my family. Of course I want to be here for Taleah, but I need my other kids too. Constant battle right?!
Treena saved the day by coming to the hospital ALL day on Saturday while I attended a wedding. Taleah actually didn't want me to come back. She cried when I walked in the door. The fact that she was playing with Treena all day and not laying in bed and staring into space made me so happy.
And I got to spend time with these 2 babes all day. If only Slade had been in SLC... but I'll take what I can get.
Day +6 and +7 were up and down. She has suction available because it is difficult to swallow her own spit. Swallowing the 1 pill morning and night is torture. She usually ends up grabbing her ears (referred pain) and then throwing up thick secretions/blood (TMI ?). She is hooked up to a lot of pumps and meds are CONSTANTLY running. The pain pump has helped to stay on top of the pain but it seems to have its own side effects. Her mood swings are definitely there and at times I have had to get after her for a poor attitude. It is hard because it is way crappy what she is going through, but I have to be careful what I let her get away with. It is fairly difficult to know what is the right thing to do. I basically HATE when she treats other people like crap, but then again she has to feel HORRIBLE! Ugh this mom business is hard. Especially the cancer mom business. Can you tell that this is a struggle for me??
Susan (art specialist) has been more than a lifesaver for Taleah. Well, for all of us actually. She was the first person to make Taleah smile since the relapse and continues to make her smile. They plan days to wear matching camo pants, make matching necklaces, and just have a good time together. She will spend over an hour with Taleah and it really lifts her spirits. I don't think she knows what an impact she has had on us throughout this relapse.

Taleah will be happy with me for a bit and then the next second she is angry with me for something. It is really hard to keep her happy and I am not sure if she is just taking out her frustrations on me, but all I want to do is be there for her. I have to make her do the hard things, but I also try and do a lot of things to make her more comfortable and happy while she is here. I start to get frustrated and a little short with her and then I feel bad about it. Again, another balance that I am struggling with. 
Taleah's labs look like they are supposed to. She has no immune system and switching off between needing blood and platelet transfusions. I am pretty sure that her entire inside lining is covered with sores. Her lips are also starting to peel and crack. She is retaining some extra fluid so she is receiving a medication to help release some of the fluid. However, she is still pretty puffy and swollen. I keep hearing that it is going to continue to get worse. Talk about anxiety. Only time will tell.
We were facetimeing (is that a word?) Slade and Scott tonight and I was reminded of the love I have for the both of them. When Slade started crying and asked me when I was coming home, it was all I could do to keep from breaking down. I want to be home so bad. I wish that this was all a dream and had never happened. I can't imagine how difficult it must be for him to understand why I am never there for him anymore. We are living out of suitcases, in a hospital, at someone else's house and he is being juggled with many different people (that love him). I had to remind him that I would see him in SLC soon and he just kept asking me why. I need to keep reminding myself that we are learning from this. We are growing and something good has got to come of it.
I don't want this blog to be only sad and negative. BUT I do want it to be real. This is childhood cancer and we are not the only ones suffering from it. There are so many kids/families and watching them all battle is almost more than I can handle. I can't wait until I am in a place where I can give back, bring awareness and mostly help those that need it.
Thank you for all of the support. I am constantly receiving texts, emails and phone calls and it really means a lot.
It makes the battle that much easier.
Thank you!
I have learned a lot


  1. You're such a beautiful lady. I hate how much this whole thing does to you and your beautiful family. I can't wait for you to all be together!

  2. Oh you sweet mom! I don't think anyone following your story expects you to sugarcoat anything. This sucks... I am so sorry your sweet family has to go through this. One thing to remember is how resilient your younger three are & when this is all done you will soon have them all to yourself. They will most likely not remember this but it will forever be engraved in your mind. remind yourself often what we all know.... You are an amazing mom & you can & are doing hard things. Give yourself the credit you deserve.

  3. It just plain sucks all around. Hopefully you are finding bits of peace and comfort to buoy you up. You are doing a great job. And Susan - I want to be a better person because of her!