Brayden is changing so fast, and is doing new things every day! It is amazing to me that I drop him off with my parents on Friday and when I pick him up on Sunday he is doing new things. Most recently he has learned to say the names of everyone in our family, is learning to go up and down stairs more safely and he knows his colors! He tends to get blue and green mixed up from time to time, but he knows them. He is doing things now that I wasn't sure he would ever do and I can't put into words how grateful I am!
Last week we took Brayden to the Great Wolf Lodge, and while they didn't have a lot of things he could do we still had fun! He went down the kiddie slide more times than I could count and he loved it. The lifeguard said he could ride down one of the big slides with me on a raft so we went for it...... Unfortunately he was NOT impressed and he was nearly in tears by the time we reached the bottom (and I felt terrible). Who would have thought that huge hills and snow would be fun but not water slides?
It was welcome distraction given the upcoming MRI and I am sure we will go back when they are selling day passes again!
His MRI was yesterday, and he did awesome as usual! We started in the orthotic clinic at 9 where he got his new braces. I am excited about these new braces because they are certainly smaller and less restrictive for him.
After we got his braces we went to see all his friends in oncology for his physical. In the two short months it has been since our last visit Brayden has changed so much, and that was apparent because he did NOT want his vitals taken or to cooperate for a height. He was very shy and didn't seem to recognize too many people. After his physical we headed down to radiology, and it broke my heart because the second we opened the door to the waiting room he began crying. It only got worse after we got called back to the sedation area, and as I sat him on the cart the hysterics began. Thankfully our nurse was very efficient! She quickly got some vitals, and poked him for the IV so he could get the hardest part over with.
After the poke he finally got in his safe place and went to sleep until it was his turn.
Brayden was away from us for nearly two hours and I was beginning to get concerned when they finally came to get us. Apparently the MRI machine went down during his scan causing a delay, which also required him to get more drugs. He drank some liquids and we got him all settled in his wagon and headed back to oncology. I think this is really when the nerves started to get the best of me because I knew the next hour would decide Brayden's future.
Thankfully Dr G came to see us relatively quickly. He initially said the report wasn't read yet but that he looked at it. As he sat down to show us the pictures the official report popped up and as he was looking at it I could tell something wasn't right. The report stated "Diminished size and decreased contrast enhancement", which basically means stable or a tiny bit better! Dr G unfortunately did not agree, and showed me multiple areas of INCREASED enhancement and my heart sank very quickly. It was ultimately decided that these areas were not significant enough to restart chemo right now, but that three months would be too long to go before obtaining another scan. The plan was to get another MRI in 2 months and send those images to Boston for a second opinion. When we left Dr G told me he would talk to the radiologist and see if there was a reason the images were read as "decreased contrast enhancement" given the areas we were questioning. As we walked to the car I couldn't help but worry a little about the enhancement, but ultimately I decided it was win for Brayden. It was a long day (7+ hours) but Brayden was a trooper as usual!
Today I was spending the day watching my sweet nephew and Brayden play, and the clinic called. I held my breath as I answered the phone, and the practitioner started with "I have good news". WHEW! Apparently the areas where we were seeing the increased enhancement are blood vessels, not tumor tissue!!!! That means the official read was correct and the tumor is STABLE. This is big for us because this is the first truly stable MRI for Brayden since his diagnosis, and it is a huge relief! This means the new plan is to get another MRI in 3 months and go from there. That means we can go on vacation and not worry (as much) about tumor progression. He won't have a central line or be immunocompromised so he will be allowed to get in the ocean and dig in the sand as much as he wants without worry! After you start down this path of pediatric oncology it is amazing how much you appreciate the little things!
On a different note, I have had several people tell me about people with cancer who have changed their diet and seen amazing decreases in tumor size/aggression. I have not done too much research about this yet, but I think I will start reading about it. If simply changing his diet could help how could I not do it? Any feedback would be appreciated :) and as always, thank you so much for praying for Brayden and following him! We couldn't do this without the support of our amazing friends and family!