More than a Tumor: August 2014

We're slowly getting there to get everyone caught up to real time. We're hoping to consolidate some "boring" (ha!) months to get to where we are today. If this is your first time visiting us, please take some time to start from the beginning to see what we're all about! :)

August ended up being a very busy month and a turning point in our journey. Nate began the month by sleeping 9 hours straight! Whoo hoo! Those nights usually come around only once in a while, so we enjoy them when they do come. The first weekend of August brought a pro tour event in Rhode Island for me. It was a nice distraction before the upcoming appointments and scans for Nate in Boston. I bowled well on Saturday and had to get back in the car to drive back home as we had tickets to Tanglewood that night. If you are ever in our area of the country, in the Berkshires, please take the time to take in a concert at Tanglewood; absolutely beautiful! The next morning, I had to hop back in the car super early and head back to Rhode Island to bowl again. I bowled well and made the ladder. I didn't win, but at the same time, I did. I lost track of the amount of people that stopped me over the course of the weekend to let me know that they were thinking about us, praying for Nate, and sending their support for the upcoming week. It was a welcome distraction to the dreaded scanxiety.

our night at Tanglewood

Tuesday arrived and we headed out to Boston. My Mom made the trip with us in hopes that she could hear good news since she had to hear the bad news during May's visit. Plus, we were making a little vacation out of it and taking the boys to Lego Discovery while we were there! Nate had an appointment with the pediatric ophthalmologist first. We were beyond nervous for this appointment. After hearing our dreaded news at May's appointment, this was our first glimpse into what could possibly happen the next day. We had to head in to get Nate's eyes dilated. If you've done this before, you know that it takes about 30 minutes to kick in. While we were in the waiting room, we got a special surprise. Two of Stephen's former volleyball players, who have since become part of our family, sent Nate a VERY LARGE bouquet of Dum-Dum lollipops. If you don't know Nate, his obsession at that time was to go through an entire bag of lollipops and unwrap each one. He wouldn't eat any of them. Just unwrap each one and then demand each one to be re-wrapped. When he saw this bouquet, we thought his eyes were going to pop out of his head! What an amazing gift to receive! Here we are, sitting in a waiting room, nervous beyond belief, anxious to hear what could be bad news, and we receive this light in the form of lollipops. It was hard not to cry.

Check out those Dum Dums!!

His vision was perfect. Just the news we wanted to hear. Her recommendation to the team would be no treatment. Perfect. That's all we needed to hear to get out of the hospital, get some lunch, and head to Lego Discovery. Ben was beyond excited! We spent a few hours walking around and playing with Legos. Ben went on his first "official" ride and all of us watched the 4D movie. Another milestone for Nate! He was able to sit through a short movie without getting overwhelmed. Score!

Legos, legos everywhere!

We went back to the hotel and ordered room service for dinner. We had to be up super early for check in for the MRI. Because Nate has to be sedated each time, he can't eat or drink after midnight which can be quite difficult for him. We do our best to keep him distracted until he wakes up in recovery. That morning, sedation and recovery went well. We've been extremely lucky with Nate in recovery. We hear stories all the time that some kids don't handle anesthesia well and wake up like a different person. Well, thankfully, Nate has done well so far. Knock on wood.

ready for the MRI

Before heading over the Dana Farber, we have lunch at Bertucci's. It's a quiet lunch as our thoughts are stuck on the impending appointment and news. All we can do is pray at this point for stable. After lunch, we head upstairs to the Jimmy Fund clinic for our follow-up with Nate's team. If anyone's been to clinic before, you can relate to the waiting game. It's tough! We sit and wait. Nate plays on the iPad and dances his little heart away. The nurse walks in and asks for an update on how he's been doing the last 3 months. We answer and do the little chit chat while waiting for Dr. Kieran to walk in. He does and you can feel the collective sigh as we hold our breath while we wait for the MRI pictures to load. Again, we know how lucky we are to be able to hear results the same day as the MRI is done. Not everyone has this opportunity. He looks at us and says, "Everything looks good." We collectively breathe. But, at the same time, we know that "looks good" can sometimes be a shady term. We ask for further clarification. He says that although Nate's tumor has grown slightly (as in millimeters), it doesn't require treatment at this point, and hopefully, never will. It was difficult to be excited after what we heard in May and the rollercoaster of emotions that we've been on for the last 3 months. It is absolutely terrifying to allow other people to make a decision that can ultimately harm your child. We are trusting him and his team with the life of our son. We have to. We don't have a choice. So, despite his suggestion of spreading out the MRI's to 6 months, we agree to 4 months. At that point, 6 months just seemed like too much for us to handle. He understood that and had no issue with staying at 4 months. Thankfully, he gets it.

After a long 2 days, we get in the car and head home. Sometimes it's quiet, just trying to soak in all of the information that was given to us; other times, we cry. We laugh. We decide to get away for a few days and go to the beach. The four of us ended up going to York Beach, ME for a few days later that week. We had a blast watching the boys play in the water and jump in the waves. We were able to eat in restaurants (a big deal!), and simply enjoy life. It was exactly what the doctor ordered. :)