Friday, October 24, 2014

Week #11 and #12, and an upcoming MRI

We have spent the last couple weeks doing all kinds of fun things with Brayden, although I am sad to say that I think the chemo might be catching up with him a little. He is spending more afternoons laying around and not doing much or just fussing, but we take every opportunity to get out and enjoy this beautiful weather when he is happy. He continues to enjoy his playground in the backyard and still loves swinging! He has found a new love and that is "bump city" at GAGE in Blue Springs. On Friday mornings they open a small part of the gym for preschool kids to play. They have trampolines, a three person swing, a foam pit and tons of stuff for him to climb on! He has also been spending time at GAGE with his aunt Jill and uncle DaShaun since they coach cheerleading there. The cheerleaders have put together a fundraiser Bump City for this Saturday evening, and 75% of all the money raised will go towards Brayden's expenses.
We also went to the pumpkin patch in Liberty and had an awesome time! The weather was beautiful and he fed animals, went down slides, and rode the train!
We have also spent time at Kauffman Stadium cheering on the Royals thanks to some very kind people. We were gifted 2 tickets for an ALCS game and Brayden (and his dad & I) had an amazing time!
He had such a great time I registered us to have the opportunity to buy world series tickets but it didn't work out. I looked at tickets a lot on stub hub but we just couldn't afford to buy them (and even if we could have afforded them I am not sure I could have convinced myself to buy them). On Wednesday around lunchtime I got a call from a friend saying "I am gonna get you guys in tonight" so we showed up when and where I was told, and snuck in. For those of you that know me well, you know that this is WAY out of character for me because I am such a "by the book" person, but these smiles were more than worth it! Mawmaw and pawpaw also made it to the world series too thanks to a different friend! Brayden just thrives on the energy in places like this. He cheers with the crowd and loves giving high fives to the people around us when the Royals score runs. Every time Moustakas batted and the crowd cheered "mooooose" Brayden would look around and say "cow". It was very cute and he had the biggest grin on his face!
I am guessing this will be one memory that will be hard to top for Brayden's daddy.......
Yesterday he went to the testing at the school district and we will get those results in a couple of weeks. Those results will determine what his therapy/school schedule will look like in January as we will no longer have the in home support of first steps. There are a lot of questions including whether he will continue to go to Marion Hope as first steps currently pays for that, and will he start going to the school district for "School" or will he continue at Mothers Day Out. He currently is receiving a significant amount of therapies and I am anxious at the thought of decreasing those therapies, but time will tell.
On a more serious note, this is week # 12, which means Brayden will be having an MRI on Tuesday. We have spent the last 12 weeks doing so many fun and extraordinary things with Brayden. He got to be a ring bearer, a fire fighter and policeman in Lees Summit, went to Monday Night football, went to a Royals ALCS game, and went to the World series. That being said we have also spent the last few months doing a lot of this......
and a lot of this.......
All of those extraordinary experiences give us something to look forward to (and something fun to remember) when things get tough and I am so grateful for everyone who has helped make those fun experiences a reality. It is amazing how your perspective changes during this experience. When he was diagnosed I wanted to lock him inside and cuddle him forever so he wouldn't get sick. Then I learned that not allowing him to do fun things wasn't fair to him, so we got out and did some things. Then he came off treatment with a short period of tumor stability and we became more like other families with healthy children and he could do whatever he wanted. 
It seems so unreal to me that 3 months has gone by since we received the heartbreaking news that Brayden's tumor was progressing. When we learned his tumor was progressing our free time became ALL about fun. That being said, I would give every extraordinary thing we have done back if it meant that he didn't have brain cancer, but unfortunately it doesn't work that way, so I continue to try and let him experience as many things as he can in his short life.
It feels like we just started going to the clinic every Tuesday for chemo and labs, but according to the calendar that just isn't true. I have always said that the ultimate goal is to allow Brayden to live his life as normal as possible and to have no regrets about how we spent this time with him. I am happy to say that no matter what the MRI shows on Tuesday, I have zero regrets about how we have spent these last few months.  I have done everything in my power to allow Brayden to do extraordinary things (with the a significant amount of help from so many generous people.) and thankfully he hasn't even been restricted due to low counts. Aside for some tiredness and occasional fussiness he has had virtually no side effects from the chemo and he is the same happy little boy he has always been.  
Brayden's MRI is on Tuesday and is scheduled to begin at 1130. Prior to his previous MRI's I have always found reassurance in how "great" Brayden looks and that he continues to do new things. Unfortunately 3 months ago I learned that none of that matters and the tumor can be growing even if Brayden looks "great". I can't put into words how much I want this MRI to show us that the chemo is working and that we are back to a "stable" tumor. I would give anything to be back to a place where I'm not wondering what the future holds. This is such a happy time of year with the holidays coming and I so desperately want to be able to enjoy it without worrying. As always prayers are greatly appreciated, and we definitely need them now. Thank you so much for reading about and praying for Brayden!

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