Thursday, August 1, 2013

MRI Results (Week # 20)

Time is flying by so fast that I am not really even sure where the last week went! I worked a couple of days, and we followed up with ENT on Friday. The doctor says Braydens ears look great and that we could get referred back if Brayden develops any issues. That means that ENT is signing off on Brayden, and that he doesn't have to go back!!
Over the weekend we went to feed the fish at Blue Springs Lake and both kids LOVED it. We also did some shopping with my family (aka trying to walk my nephew out so he didn't have to be evicted on Monday), and mostly took it easy.
As everyone knows, Brayden had his MRI on Monday. We had to be there super early so Brayden got to wear his jammies and he was still trying to wake up as I strapped him in his car seat. We left the house shortly after 5AM, and Brayden was being sedated at 7ish. This MRI was a bit different because the nurse let me hold Brayden while she put him to sleep. She did give me a disclaimer that most nurses aren't comfortable with it but she thought it was fine and she also thought kids needed less drugs this way. After he was asleep we went to the waiting room to climb the walls as usual. While he was sedated after the MRI they checked his hearing and it looks great! So far there is no hearing loss associated with his chemo.
After Brayden was recovered we stopped by to his Auntie for a quick visit and then Brayden headed home with Bret so I could cheer my sister on while she delivered my sweet little nephew Logan. Logan was born shortly after noon and weighed in at 8 lbs and 4 oz.
To say the least, I will say that the morning was jam packed of activity, so I headed home to take a nap while I waited for our oncologist to call. Shortly before 4, I woke up and hadn't heard from Dr G yet so I called the clinic. As soon as I hung up with the clinic the phone rang. I clearly wasn't patient enough. Dr G was pleased to say that the MRI looked great, so at this point it is safe to say that the tumor is STABLE. I know we are all hoping for some sort of miracle, but to me stability enough right now. It means that there is no indication (at this point) that Brayden will not be in the 40% of kids that are alive 5 years after diagnosis, and that is a relief.
On Tuesday we went and got Braydens chemo. It was the most uneventful and the fastest chemo day yet. We in and out in just over 4 hours and that is a new record by far!
Yesterday Brayden had therapy and did quite well for it being the day after chemo. He smiled big during the visit and even did some imitation play. Imitation play is very rare for Brayden so this was big for him! He also did some crawling (with quite a bit of help from his PT) but he didn't protest! He has also been holding his own bottle, and while he makes a huge mess, he is doing it himself.
Given all of the events of last 6 months, our most recent STABLE scan, and our recent vacation, I feel like it is time to move forward. I am letting my guard down (somewhat) and getting back on track with his developmental milestones. Brayden will be getting his casts made tomorrow for his foot/ankle braces, and per ENT's recommendation I have him scheduled for a speech evaluation as well. Our oncologist is suggesting getting him in to a dentist because he is grinding his teeth more and more, but that will be count dependent, meaning his ANC will have to be a specific number to go.
In the true spirit of moving forward, after much thought and discussion, Bret and I have listed our home for sale. We bought this house 4 years ago from my parents, and in all honesty, it is bigger than we really need and it is 10 years old. We bought this house thinking we would have three children and stay here forever, but our life plan and financial situation has changed a bit. I have some good memories here, but I also have some pretty traumatic ones also...... I walked by Brayden's empty nursery for 8 weeks and cried myself to sleep most nights while he was fighting for his life in the NICU. This is also where I sank to the floor in tears when I was called with his MRI results that indicated he had in inoperable glioma. Both of my grandparents earned there wings here and my parents and I had just moved in this house when we learned that my brother had passed away in a car accident. I think that is enough turmoil for any house, so we are hoping for a fresh start somewhere else. We don't have a real plan, just a "for sale" sign and a MLS listing and we will see what the future holds. I can thank Brayden's tumor for teaching me how to live life without a plan, appreciate the little things and for making me a stronger person.

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