Thursday, January 16, 2014

Chemo vacation!



Its been a bit since my last post. Brayden had a very busy week, and I have lots of news to share! Brayden and Lizzy had a wonderful time at sesame street live, and then had a quiet weekend.
 
 
On Monday Brayden had his MRI. He did well with his the sedation, although his blood pressure did get a little low. He slept the entire day away and was still pretty clumsy when he got up from his nap. He was quite frustrated by his inability to walk and pull up so he went to bed early. On Tuesday we went and saw Dr G and Brayden got his monthly IV antibiotic. Here are the things we learned during Brayden's appointment with Dr G:
  • Brayden will not receive any further chemo (unless something drastically changes) for at least 3 months, and then we will get another MRI to see what is happening.
  • This is called a chemo vacation for the simple fact that it will be temporary.
  • Dr G is "hopeful" that Brayden will be able to remain off chemo for 6 months.
  • His port will need to be flushed monthly and we will got to clinic to do that.
  • He can begin an oral antibiotic instead of the IV one starting next month.
  • When comparing images from one year ago to Mondays images, the tumor definitely looks different.
  • The overall tumor seems to have been affected by the chemo and is darker in color.
  • Some of the contrast changes noted on previous MRI's are now looking like cysts.
  • There is no need to worry about the cysts unless they grow rapidly or begin pushing on the surrounding brain tissue.
  • If they begin  causing problems, a needle might be able to be inserted into his brain to drain the cysts.
  •  
On Wednesday Brayden had therapy but he really wasn't having it. He was quite cranky due to a face plant on the kitchen floor which caused  nosebleed. He did get to play with his pal Haleigh and they had quite a time.
 
Today we headed to the dentist and I was pretty sure it would be uneventful. Unfortunately I couldn't have been more wrong. Brayden has "enamel hypoplasia" meaning some of his teeth don't have the required enamel to protect his teeth, and some of his existing enamel is chipping away. Apparently this is another issue caused by his prematurity. The formation of dental enamel begins during the second trimester of pregnancy, but it is during the third trimester that calcium and phosphorus start to play a part in the enamel. Enamel hypoplasia is found in preemies 4 times more often than full term infants.  His two front teeth are the most affected and have been causing him some sensitivity issues. At this point we have two options, the first being have his two front teeth capped which will require him to be put to sleep. The other option is to have them extracted, which to me isn't really an option. At this point I don't know the logistics of the whole thing, but I am hopeful someone from the dentist will call tomorrow.
 
On a happier note, we have officially booked Brayden's summer vacation. We will be going to Myrtle Beach in June with all of Brayden's favorite people. I am hopeful we can stay away form the chemo for that long but we will see. In my mind I have visions of a healthy Brayden chasing Lizzy all over the beach, and vice versa. I hope they will have as much fun as we are hoping they will.
 
I have also started a new project at home. Bret and I (mostly I) decided to paint one of our extra bedrooms with fun colors and turn it into a play room for Brayden. I started painting today and I am hoping it will be ready for him by the end of next week.
 
For now are just enjoying Brayden and the concept of a "chemo vacation". For the first time in a year, Brayden will get to go an entire month without having to spend hours in the clinic. I was hoping for no needlesticks too, but this dental thing is going to mess that up. I think at this point we have to take the good with the bad, be grateful for a "mostly stable" tumor, and keep pushing forward. As I write this blog, Brayden and Daddy are pushing a car across the kitchen floor and then having scooting races to see who can get the car first. He is making leaps and bounds with his development recently and I am hopeful that will continue!
 

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