Wednesday, March 2, 2016

Life update!

 
 
 
I'm happy to report that today marks just over three weeks since Brayden's surgery, and he has very few deficits following his surgery! His vision and balance issues that we saw immediately post op have corrected themselves or he is compensating and I just can't tell, but either way he looks awesome. He is back at school with his friends during the week and doing fun things with his people on the weekend! He is back to being our easy going and fun loving sweet boy. I guess he really is a superhero......
 
 
The surgery was a success in the sense that the surgeon was able to get the required amount of tissue and he left my sweet boys personality completely intact. As far as the brain tumor, it has been decided (based on pathology) that it is significantly more aggressive now than it was three years ago, and at this point we aren't sure what that will mean for his future. His tumor used to be a grade II tumor, which meant it was low grade and likely benign (not cancer), but now it is a grade III and likely malignant (cancer). I guess it is normal for tumors to progress through the scale, which means at some point may progress to a grade IV. Sadly the best treatment for grade III-IV tumors is radiation but Brayden isn't a candidate due to the location of his tumor and his young age. We have an appointment Tuesday morning to hear about what the recommendations are from the tumor board as far as treatment, and I am nervous to hear what they have to say. It is unclear at this point if there are any medications that will be effective but time will tell. Neurosurgery has scheduled an MRI for 90 days post op and they suggested we be should be prepared to see growth, but they are hopeful that won't be the case. In the meantime, we will continue to focus on doing fun things with Brayden and taking it one day at a time. This weekend he will be going to a train hobby show with his people and I am sure he will have great time. These are the moments that I am sad I work weekends because I always miss out on these kinds of activities, but I am so grateful that my parents are willing to take him while I work.
 
 

Given the biopsy results, I decided it was probably time for Brayden to make his wish. We met our awesome wish granters through "make a wish" and Brayden loved them! They brought him a battery powered "Gordan" train, and they became fast friends with Brayden. After a lot of discussion, and trying to get Brayden to verbalize what he wanted his wish to be, it has been decided that Brayden wishes "to go to Disneyworld with his people". It sounds like they are going to let Lizzy join us since his sister isn't old enough to really be a companion for Brayden and I am sure they will both be thrilled about it. After all, what 4 year old doesn't dream about going to Disney in VIP style?  I don't have any details about when this will happen yet, but I am only allowed to travel through the end of April given my high risk pregnancy history. I am hopeful we can get it coordinated before then because if not it will have to wait until late summer and I am not sure how Brayden will look clinically at that time.
 
I want to thank everyone who has donated to the gofundme page that my mom set up! There has been an overwhelming amount of people donate and I am so grateful. I also want to thank the Elkettes for their generous donation too! I couldn't be doing this without help and I am so appreciative of everyone's support for my sweet boy. As always, thank you for following my sweet boy and praying for our family!! 

1 comment:

  1. excellent support! I think you're right! child needs the belief that all will be well!

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