December 2014

Welcome back! I decided to take the summer off from writing as it was a crazy, emotional (more on that later), and busy summer! But, now that the boys are in school, I've decided to come back and continue our story. Thank you for joining our family on this journey.

We've hit December of 2014 in Nate's journey and the dreaded 4 month scan. After all of the emotional turmoil that May's news (potential treatment) brought and then going on a high after August's news (no treatment), we were ready to get this set of appointments over and done with. As usual, I met with Nate's ophthalmologist the day before the MRI in Boston. She is a super sweet doctor who is made to work with children. She sings his favorite songs with him; how could he not like her??  We started off with great news....eyes are good, optic nerve is normal, no damage from the hydrocephalus. All good things!  We left super early the following morning to head back into Boston for his MRI. Everything went as smooth as can be; sedation was quick, recovery went well, and the follow-up clinic was on time.

waiting to be called back for his MRI

After meeting with the team, we heard the news we were waiting for....STABLE. That's all we ever want to hear.  It's always incredibly difficult to wait; even if it's only for a few hours once he leaves the MRI machine. Fellow brain tumor parents can understand, but unless you're in the middle of it, there's really no feeling to describe the agony of waiting to hear those words. We are so thankful that we're in a place where we hear results on the same day; we know many families that have to wait, sometimes up to two weeks for results! That is not okay.  I am including a picture of Nate's December scan at the bottom of this post. I went back and forth on whether to include it, but I think it's important for people to see it. It's a real reminder of what's going on in his head. Most people see him as a healthy, happy, and funny little boy. He IS ALL of those things. But, there are days that the image of his MRI will creep into my head and remind me of what we deal with everyday. I've gotten to the point that most days, I don't even think about it. Then there are the days it's all I think about. So, if you don't want to see the image, don't scroll all the way down.

It's always nice to read text messages and Facebook posts from people that are thinking of Nate and praying for us to get through the day with positive news. I will never forget one particular message from a friend in Baltimore after I posted Nate's results.  She said that she was waiting to hear the news and felt like, "it was a present for all of us." Those words will stay with me forever. I know we are not alone in this. Although it's hard for people to grasp what we feel on a day to day basis, it's always nice to know that we have a supportive network of people from all over that just want Nate healthy.

It was great to be able to leave Boston knowing that Nate only had one more appointment to get through and we could start enjoying all the wonderful things that December brings: basketball for Ben, ice skating, snow, Christmas, and specifically Ben's 5th birthday! Playing basketball and learning how to ice skate were new things for Ben and watching the excitement on his face was well worth it. He is such a terrific kid and has had to deal with too much at his age. Things he shouldn't even know about. It's definitely a struggle to find a balance to make sure they both get what they need emotionally.

Ben taking a break from ice skating

Happy 5th birthday Benjamin!

Nate and I met with the sleep consultant and his ENT doctor on the same day a week after his appointments. Because his sleep was improving slightly (he had been getting to 9 hours straight at night!), she decided to tweak it a little bit and see what happens. The ENT was quite impressed with him too. She felt like he was becoming a better patient which is always something good to hear! She worked on his left ear a little bit, which was absolutely terrifying for him, but we got through it. And the verdict was in....NO doctor appointments for 6 months! No trips to Boston. No trips to Waltham. What a fantastic time for Nate!

We were also very exciting to learn that we had hit the $30,000 mark in our fundraising efforts for Team Nate the Great. Team Nate the Great (click the link to check it out!)
It's a wonderful opportunity to help other families dealing with a brain tumor diagnosis. The funds raised go straight to research, and Nate's doctor/team are direct beneficiaries of the monies raised.  What a way to end 2014!

The following image is of Nate's December scan. If you're not familiar with imagery of the brain, the white "blob" in the middle of the picture is the tumor.