Friday, November 15, 2013

Week # 35

It occurred to me today that the last blog I wrote was before Halloween! For those of you that don't follow Standing with Brayden on facebook, I will share that Brayden had an amazing Halloween, loved trick or treating and that and he was one cute puppy!
I guess things have been pretty busy around our house recently, although I am happy to say that we only had one cancer related issue! Last Monday Brayden unfortunately spiked a pretty high fever but it was during the day so we were allowed to skip the ER and just headed to clinic. Thankfully his counts were great and his blood cultures were negative indicating he just had a virus so he was not admitted! He gave me that same virus and I will say it was pretty rough..... I think my throat just quit hurting yesterday.
This week his counts were even better, ANC 1950! I think that is the highest I have seen his ANC in a long time and while I am pleased its that high I wonder if that means chemo isn't doing what it should. Dr G assured me we are still in the "acceptable range" for the chemo dose even though he is only getting 85% of the initial dose. I have not heard anything yet on the Boston front and am hoping to hear something when Brayden goes for chemo this coming Tuesday.
Earlier this week we took Brayden back to Omaha to visit Bret's mom. I learned one rough lesson while we were there and that is that we can not share a room with Brayden because he will only scream and cry when he can see us from his bed. We finally left the room until he went to sleep and then snuck back in silently and went to sleep. While we were there we did some shopping and visited the Omaha Childrens Museum. There were a lot of things that Brayden couldn't do and didn't understand, but he had a good time overall.
Brayden walked/ran all over that museum laughing and was quite tired by the time we left.
Yesterday we celebrated Bret's birthday and Brayden loved having all his people over! He and Lizzy played with toys and ate a pretty good hot dog/ mac and cheese dinner while the rest of ate homemade enchiladas, but I think the dirt cake was their favorite.
Brayden has been doing awesome and is virtually changing everyday. He is becoming more verbal and can now say "drink", "push", "put it in", and "bite", all with meaning. He is also now pointing to what he wants, and he is able to turn on the radio in his room whenever he wants to dance. He is still not able to pull to a stand but he is bending to pick up objects off the floor so I am hoping we are close.
While reading another cancer moms blog today I found this quote, and it could not be more true. "It takes far more strength to be thankful than wishful." Being thankful is harder in my mind because if you are thankful that means you have truly accepted what is happening. I have accepted what is happening but I still hope for a miracle and I think that's okay.
There are so many things that I am thankful for, and in the true spirit of the upcoming holiday I want to name a few of them. I am so thankful that we were given this time with Brayden, to have the opportunity to make memories with him and do as many things with him as possible during his life. I am thankful that I will not be blindsided like so many other unfortunate parents who are told "weeks to months" at time of initial diagnosis. I am thankful that he is still progressing developmentally. At our very first oncology appointment I was asked if I had seen any "regression", which indicated to me that is what Dr G was expecting. Ever since then I have a new appreciation for each new thing Brayden does. I am thankful that I am able to work weekend option because it makes it feasible for me to work part time which means I get to spend 5 days a week with my hero and I never have to miss any doctors appointments or chemo/lab appointments. I'm sure this sounds crazy but I have some great memories of chemo time cuddling with Brayden in a semi-comfy recliner in our tiny dark exam room. I am thankful to have my family because they are supportive and very helpful, and while we disagree at times, I couldn't do this without them. While I wish I could say that I never have bad days that isn't the case. Some days I am overcome by anger or sadness when I think about what is happening, but then I think about how I want to remember this time and I am able to redirect myself and the emotion subsides after a tiny smile or giggle from my little hero and that is what I am most thankful for..... Smiles and giggles can make anything better!
Tomorrow Brayden will be headed to his very first circus with his mawmaw and pawpaw while this momma goes to work, and I am sure they will have fabulous time. Hopefully they will get some good photos of Brayden and make some lasting memories of their own!

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