Nathan's Story: June 2016

June 2, 2016

Summer is here!

I know so many of you are celebrating these last days of school and the beginning of fun summer activities. There is no greater feeling for a child than the last day of school! Enjoy every second with your friends and family and safe travels during all of your summer vacations.

Today we are full of many different emotions and feelings. Four years ago today, Nathan was diagnosed with his brain tumor. He was admitted to the hospital at 7 months of age and we had no idea what was about to hit us. We spent the next 32 days at Children’s trying to help our baby recover from brain surgery. This is what people mean when they say, “You can’t prepare for tomorrow, so make sure you enjoy today.” From two weeks of age we knew something was not right with Nathan, but we never imagined we would receive the devastation that the diagnosis of a pediatric brain tumor brings.

On June 2nd, 2012, our lives were forever changed when Nathan came out of his first MRI. Little did we know there would be 24 more to follow and over 80 chemotherapy treatments before his 5th birthday. The memories of June 2nd are ones I try not to visit very often, but they are memories that humble us and make us who we are today. They give us the ability to fight for Nathan’s health with everything we have. They are the memories that will forever change the way we look at each day and the relationships we have. I don’t forget those memories, I try to use them to make a positive impact on our lives moving forward.

I can remember the conversation like it was yesterday that we had with the oncologist for the first time. Our bodies were tired, our minds were numb, but we knew we had to focus to give Nathan the best possible outcome. She outlined what the coming days would look like and the typical plan for a child like Nathan. As tears came down my face, I can remember asking her, “Will Nathan make it to his first birthday?” She quickly replied, “Yes, and we will make sure he has many many more.” She was right.

Today, we don’t forget those difficult weeks in 2012, but we do take time to celebrate what we have been given four years later. On March 7th, Nathan had his last MRI. At that time we were in an extremely difficult place. The scans were not giving us the information we needed, but Nathan’s body was telling us it was time to switch chemotherapies. Due to side effects, he could no longer stay on Avastin and we had to choose yet another treatment plan for Nathan. We spend several weeks making sure we did everything we needed to in order to choose the right path for Nathan. His next course of treatment was initially denied by insurance. We spent three weeks working with the insurance company to get the necessary approval. At that time, we were beside ourselves because we knew we needed to get started on something quickly. Nathan’s kidney functions were also elevated, so even if we were able to start therapy, we had to wait for his kidneys to recover. There were quite a few things that were not moving as quickly as we needed, but we are grateful for the unexpected administrative and medical hang ups because they completely changed the course of Nathan’s treatment plan. As a result, we are in a much better place.

Over the past few months, Nathan’s symptoms have gone from periods of extreme concern from everyone involved in his care team to looks of total confusion. His symptoms are all over the place and are not giving us enough indication that we actually need to start the next treatment. He had an MRI last week and the scan was completely stable. Although this is what we pray for, we were not certain that is what we would see. If there were not a series of complications that occurred over the past two months, we would have started on his next chemotherapy they he truly may not need right now. We will meet with his doctors in Boston at the end of June to reassess the plan, but as of now, Nathan has been chemo free for 8 weeks and it is our every hope that he will remain that way for awhile. We don’t know if we will have to start therapy in a week or a year, but we are certainly trying to make the most of every day he gets without the heavy medications in his system. He started chemotherapy when he was 10 months old and besides a three month break last year he has been going nonstop. His body is very tired and is ready for a much needed break.

We are certainly not following a clear path, but we are trusting ourselves to be patient enough to wait and watch. There are so many balls in the air with Nathan’s case and we hope we are doing everything right to give him the best chance for a healthier life. In addition, we also found out that the only neuro oncologist in Pittsburgh has resigned and we will be transitioning to a new team of physicians in several months. The most important thing the children in the neuro oncology clinic need is consistency. Our prayer is that the right minds come into our children’s lives to help guide the collaboration that is necessary for a case like Nathan’s.

One of the highlights of this past year has been Nathan’s Make-A-Wish. Two years ago, many of you joined us at Bob and Debbie Busteed’s home for a spectacular night of fundraising for Nathan’s fund. We raised close to $25,000 in one evening for pediatric brain tumor research. Bob and Debbie have dedicated themselves to helping others in need. They are an inspiration to me in so many ways. They have once again decided to do a fundraiser for a cause they believe in. Debbie called me a few weeks ago and asked me if I would choose where we would like the money to go. Make-A-Wish has not only touched our lives, but it has made a positive impact on so many of our friends from the hospital. It gives families of children with life threatening illnesses a moment of hope and joy. It brings smiles to the faces of so many kids who show their strength and bravery day after day. Without a doubt, we would like to give back to Make-A-Wish this year by participating in this amazing day of fun. Please open the attached invitation for details of this magical day on July 9th. Debbie, Keely, and myself would love for you to join us in supporting this great cause. I would like to give a huge thank you to Debbie and Keely for everything they are doing to make this day perfect!

As always, you are all in our hearts and prayers. So many of you have made Nathan your devotion and daily prayer. There is not a doubt in my mind that God is listening and hearing us ask for help and guidance. He is giving us the peace of mind we need during periods when it would be easy to overreact or lose trust. Thank you for walking this path with our family. We need you and we appreciate you all.

Happy Summer!!

Mike, Beth, Nathan, and Samuel