Wednesday, May 29, 2013

Pool Time! (Week #11)

This morning my mom asked me why I hadn't written a blog yet. Truthfully, I was having a rough day yesterday, and I really didn't have anything to say. I basically spent yesterday afternoon shopping while Bret stayed home with a napping Brayden. I just needed some alone time to try and gather my thoughts/emotions.

There is also a new fundraiser in the works for Brayden. Click the fundraising tab above for more info!
As we drove to the clinic yesterday I had high hopes that his counts would be good so we could get back on track with Brayden's treatment plan. Unfortunately after drawing his labs, and doing a "manual" ANC count (meaning a lab person actually counts the number of neutrophils under a microscope) we found he did not make counts for the third week in a row. His ANC has been virtually unchanged for 3 weeks now. The plan is that Brayden will stop taking his antibiotic by mouth completely and get an IV antibiotic weekly (something else to have worry about/get administered during our beach trip). As far as his ANC goes, the only thing that will help the actual count is time, but no one seems to know how much time. When his counts are improved enough to get his carboplatin, the dose will be decreased by 25% so we can try to avoid further delays in Brayden's treatment. I have these terrible thoughts creeping to the front of my mind about what Brayden being unable to tolerate chemo will mean for us. We were told he needs chemo to keep the tumor from growing, and now he can't take the chemo because of his counts. I try to not think about it too much but I am a realist, and I do not want to be blindsided at a later date.
During our visit we also told our NP we took Brayden to the lake for the first time last weekend. We then learned that taking him to the lake is not an "approved" activity. Apparently lakes are dirty places and are full of bacteria from an oncology standpoint. Those of you that know me well know that I have spent the majority of my summer weekends for as long as I can remember on a boat. I used to have nap time in the boat as a little girl, and I had hoped for the same for Brayden, but that clearly is not going to happen. We were told he could go out on the boat, but that he could not get in the water. I am sure if Brayden could vote he would vote to stay home. I certainly wouldn't want to wear a coast guard approved flotation device for hours in the 80 + degree heat without being able to get in and cool off.
When we booked our Florida beach trip it would have been at the end of a cycle, meaning Brayden should have been feeling great and not be too immunocompromised. If we get back on track Tuesday and stay on track, then he will receive carboplatin on July 2nd and we would leave for the beach on the 5th. At this point, I am wondering if that would even be safe for Brayden, but I guess there is no sense worrying about it until we see what his counts are on Tuesday. 
I feel like when things are starting to look up I get jerked back to "brain tumor world". Brain tumor world is this ridiculously unfair and emotional place where the only thing that you can count on is that nothing will go according to plan. Things can change in only a moments notice, and just when you find your footing the rug is yanked out from underneath you. Then you do the only thing you can. You pick yourself up, dust yourself off, and move forward. Sure there are other options, but who wants to spend days crying about what may or may not be happening? That is not how I want to remember Brayden or this experience. When I look back on this journey, I want to know that we had fun and that we made as many good memories as humanly possible. Brayden truly is my hero and I can thank him for teaching me what really matters in life. It doesn't matter that my 17 month old doesn't talk, walk, point, or call me momma. It doesn't matter that Brayden can't verbalize his needs. It doesn't matter that Brayden still drinks from a bottle. It doesn't matter that people stare at us when we go places and he wears his mask. It doesn't matter that we have zero money. It doesn't matter that the house might be dirty. It doesn't matter when Brayden is cranky and wants to be held all day. The only thing that matters is that we have this time, and that we are together.
That being said, we took today as an opportunity to do something fun and exciting with Brayden! He loves the water, and our oncology team is okay with pools.......
At first Brayden seemed unsure about his raft, but about two minutes into the floating he thought it was great. The weather didn't want to cooperate so we didn't stay long, but we did at least have some fun!

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