Nate's annual MRI is usually in November. It was originally scheduled for November 1st, but I received a phone call asking if we felt if Nate was ready to try to complete his scan without sedation. He decided that he was willing to try it. He had a successful "without sedation" scan on Sunday, October 21 with the follow-up appointment with the brain tumor clinic on Thursday, October 25. The HUGE downside to switching to doing MRI's without sedation is that we didn't get the results on the same day. That made it four days of anxiety waiting to see if the tumor has grown, if he's experiencing any hydrocephalus symptoms, etc. To add to that stress, because his former oncologist left the brain tumor clinic in Boston, his entire team is now new to us. He saw a new neuro-oncologist and a new neurologist on that day.
The team walked in together, which for us, is usually not a good sign. If they come in separately, that has typically meant that things are stable and the follow-up will be quick. Unfortunately, that wasn't the case. His tumor showed growth. We were not expecting this news as he had been doing so well and had been on annual scans for 2 years. We were shocked. And sad.
They suggested that we continue on watch and wait, but go back to scanning every 6 months. The neurologist wanted to become more vigilant with his eyesight (which has always been perfect) and the potential damage to his optic nerve (which there is none). So, we left that day disappointed and frustrated. It was a long ride back from Boston.
Now, fast forward to today....Nate had another scan back on March 7, as well as a visit to the neuro-opthamologist. Both appointments went well. It was determined that although his tumor has changed shape slightly, they are considering it stable. They were confident enough to continue with another scan in 6 months, which will likely be in September. Although Nate continues to live life like he doesn't have a brain tumor, it is still difficult sometimes to adjust to the fact that it has grown. Once it was considered stable enough to go to annual scans, it got easier to not think about it every day; especially with how well he's doing in all aspects of his life. I guess it's just another bump in the road.
Life has changed a ton; the boys have been adjusting to life with Mom or Dad, not Mom and Dad. Once they got the schedule down, they've settled into their new routine. They're enjoying their time in both of their houses and look forward to seeing whomever they're headed to see. Clearly, a huge adjustment for all of us.
The winter season was filled with hockey for Ben and basketball for Nate. Both were such enjoyable seasons, especially Ben's hockey. He moved up a division, which was challenging for him and he loved every minute. His teammates became a second family and it was something we all looked forward to doing, especially Nate, who dubbed himself the team mascot.
Now that the spring season is upon us, it's baseball for both boys! Ben
made a Little League team which is super pumped about and Nate is giving
baseball a try for the first time. We're all excited for that. It should make for an interesting spring!
As I write this, I can't believe that today marks 6 years since Nate's brain tumor diagnosis! So much life has happened in those 6 years. We've met so many wonderful people and families since April 12, 2013. I've had several friends learn their children had brain tumors after Nate's diagnosis, all of whom lost their battle: Landon (glioblastoma), Tony (high-grade brain stem glioma), Lea (DIPG)...the boys talk about them and Nate's light will shine brightly for them, always. We've connected with A Kid's Brain Tumor Cure (which now works with the Pediatric Brain Tumor Foundation) to raise funds for pediatric brain tumor research. I am proud to say that we've raised over $80,000 since we started his page. I helped start a support group for parents, as well as adults that have the same diagnosis which now has members all over the world. I remember those first few days, weeks, and months post-diagnosis. What a fog I must've been in! I am humbled to be able to help parents navigate those early days, letting them know they are not alone on this journey. Nate is the prime example of how to live life with a brain tumor. He will never let anything stop him, and neither will his brother!
If this is the first time you're reading this page, you may want to check out earlier blogposts to help you understand how we got here. And thank you for joining us on this crazy journey we're on!
And, if you're ever looking for a great place to donate, where most of the funds raised go directly to research and not someone's paycheck, check out Team Nate the Great
