Thursday, October 24, 2013

Week #32

 
 
Brayden has been having some serious fun since his MRI on Friday. He went to the Louisburg cidermill on Sunday with mawmaw, pawpaw, daddy, Lizzy, and Logan. I was working and didn't get to go, but they apparently had an awesome bouncy mat that Brayden thought was quite fun. There is a video of that on his facebook, but I have not figured out how to make the videos show up here......
 
 
Then on Monday we met some friends in Lees Summit for some more fun. Brayden and I fed some Alpacas.
 
 
And Brayden did some swinging.
 
 
On Tuesday we headed to the clinic. Brayden made counts and received his chemo this week as scheduled. For the first time ever, I was able to get him to nap on the cart. Granted it didn't last long but it did give me and Bret time to have a snack.
 
 
When Brayden woke up he thought needed a snack, and he very carefully took one teddy graham out of the bag per bite. I was quite impressed at how well his fine motor skills are progressing!  
 
 
During this visit I had a chance to really talk to our oncologist about the MRI results. It appears the tumor has a few areas with increased contrast enhancement, all measuring approximately 1mm. The tumor is measuring 30X60mm in total (approximately the size of an egg) and has not grown since beginning this chemo regimen. A different area of the tumor we were concerned about because it showed increased enhancement two scans ago is now less enhanced. There is no definitive evidence that increased enhancement means progression in low grade gliomas, nor is there definitive evidence to show it doesn't. Dr G said there were multiple reasons we could be seeing more enhancement and he does not believe we have the concrete evidence required to make him want to change Braydens regimen at this time. He said that if there is significantly more enhancement in three months he would suggest changing then. In my true curious nature I asked what the next regimen would entail. He mentioned possibly weekly Vinblastine, which I googled the second he left the room and then I immediately wished I wouldn't have.
 
Before he left, he told us that Brayden's tumor is extremely rare and that there is little evidence based information available at this point. He also mentioned that he hasn't seen many of these tumors thus far in his career and offered to send for a second opinion. With that being said, Brayden's MRI images are being sent back to Boston Children's to be presented at their tumor board. We will hopefully hear something in the next few weeks so we can make an educated decision about next months chemo. In the meantime, we are moving forward with our day to day routines and I find myself in a much happier and more positive place than I was last Friday.
 
I want to take a minute to thank everyone who is following Brayden and praying for him as it does make this journey easier. At lunch today we met a lady who has been following Brayden on facebook. It always warms my heart watching peoples expressions change after they ask "Is this Brayden". It always catches me offguard when that happens and surprisingly enough it has happened several times when we are out and about. When people meet him unexpectedly you can see in their eyes that they genuinely care about him, and that makes this momma happy!
 

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