Good evening!
Happy first day of school to all of the amazing children and teachers in our lives who will start their first day of school this month. As a teacher, I know the excitement of having the kids walk in the room for the first time is one of the greatest moments of the year. It is a time of new beginnings, excitement for the year ahead, and an opportunity to reach goals you didn’t know were possible.
We have spent the last three weeks gathering information, completing several diagnostic tests, and meeting Nathan’s extensive team of doctors, both here and in Boston, to make sure we have all of the necessary information to best treat Nathan. We have received overwhelming reports from everyone that they believe Nathan is doing extremely well.
His last chemotherapy treatment was on April 11th. I could not be more excited to say that next week Nathan will be chemo free for 5 months!! His MRI last week showed that the tumor has continued to remain stable which is a critical piece to treating low grade gliomas. The doctors feel that if we would have seen a rebound from the Avastin therapy it would have most likely happened during the first three months off treatment. Although this was not the treatment plan that was outlined for Nathan in April, we trusted ourselves and Nathan’s medical team to feel comfortable enough to just wait and watch for a few weeks. A few weeks has now turned into a few month. We can only hope that a few months will turn into a few years of no treatment. We know the key to treating Nathan’s tumor is to find that stable period for several years where no treatment is needed so we do not exhaust a decreasing list of possible chemotherapy options. We will continue to wait and watch his neurological symptoms in hopes that they do not progress and through specialized therapies he learns to overcome the deficits.
Since Nathan has been on therapy since he was 10 months old, we only know a Nathan who battles the effects of chemotherapy and never complains. We never realized just how much it was effecting him. We had no idea what Nathan’s body was capable of physically until we watched the recovery process happen this summer. It has been the greatest summer we have had in five years. Nathan is strong, he is full of energy, he is challenging himself, he is keeping up with the other kids, and most of all he feels confident to take risks and push himself. A few weeks ago he tested for his first Tae Kwon Do belt. We all sat there while he did everything the Master asked of him without rest and without modifications. If you told me 6 months ago what he had to do, I would have said there will need to be exceptions because Nathan can not physically do those tasks. Well, I was certainly proven wrong and I couldn’t be happier. My family and I all sat there and supported Nathan as he proved to us once again, I am not giving up. It was one of those special moments of firsts that we will never forget.
As you know, Nathan’s oncology care brings us to Dana Farber Cancer Institute in Boston. We usually go every 10-12 weeks following Nathan’s MRI. Over the past three months we have had to go every month due to the leave of his oncologist in Pittsburgh. We are always so grateful to Mike and Jaime for opening their home to us. We could not do this without them. They turn our “business trips” into days full of laughter and fun. During our last night there, we had the opportunity to spend the evening with two of their best friends, Lori and Kenny. They are an amazing couple of deep faith and commitment to their Mormon church. We had never met Kenny and he didn’t know very much about Nathan. The first thing he asked us was, “What is the most important thing you have learned from your experiences.” I must say, that took me a little off guard since we have never met. What a great question to ask. I have not been able to get that question out of my mind since he said it. That question is hard because it really is what defines our family. I would love to say we are the same old happy go lucky family that we were five years ago. I would love to say that we lead a normal life. I would love to say that we try not to let it effect us, but none of that is true. This experience is now what dictates how we spend our days, our relationships with family and friends, how we look at our future, and most importantly our faith in God. That simple question is one we should all ask ourselves. If we don’t stop to reflect on how the “good and the bad” have changed us then the experience is useless. Nathan’s fight to a cure can not be useless. To find purpose in this challenge we have been faced with, Mike and I have tried to use what we have learned to educate other families, support the causes we believe in most, and show God that we will always live in a way that He chooses for us. We were not given a choice when we received Nathan’s diagnosis on June 2nd of 2012, but we are given a choice of how we use these experiences to shape not only our lives, but the lives of everyone we meet along the way. Nathan and all of his little friends who fight for their lives every day give us the guidebook to life. If we are willing to just take a moment to stop and watch, these children teach us everything. They teach us to be genuine in our relationships, honest with ourselves, ask for help when we need it, cry when we are scared, and believe that anything is possible if you love deep enough. Nathan absolutely knows that he is loved by so many people and they are counting on him to be the best he can be.
On October 1st, Nathan will celebrate his 5th birthday. This will be his first birthday where he will be chemo free! Now that is something to celebrate! He and Samuel have chosen a superhero theme which seems to be a perfect fit for this year. Just like the first day of school, we are certainly living a time of new beginnings with no chemo, excitement for living the next three months without frequent doctors appointment and heavy medications, and watching Nathan achieve goals we never thought were possible. The diagnosis never goes away, so it is hard to celebrate where we are. Although, you better believe we take these times to breath deeply, recover from what we have had to do, and thank God for each healthy day.
May God continue to guide you as you battle your own challenges in life. So many of our close family and friends have significant health issues of their own, yet never forget us. My final prayer ever night is, “Thank you God for all of the prayers you receive for Nathan every day. I know you are listening. Please pray for those who remember us every day. “
Thank you all!
Love,
Mike, Beth, Nathan, and Samuel
www.nathanleckey.blogspot.com
Thank you for all of your support with the Make-A-Wish fundraiser in July. We hit the $10,000 mark and will be able to fully grant between two and three wishes. Since we are fully funding a wish, we will be considered wish makers and be able to follow the wish we are funding. I will keep you informed of what the children choose and send pictures. You can also follow their progress on Nathan’s blog. Thank you to Bob and Debbie Busteed for an amazing day for the kids!
