Happy Fall!!
Another school year has started, all the summer fun has winded down, and we are ready to start a period of new beginnings. I hope this update finds all of you doing well and enjoying this exciting time of the year.
The last update I sent was on February 18th. At that time, Nathan had a scan where the tumor was appearing to be metabolically active and we were not sure what the next six months would bring. We chose to hold off on treating the tumor and let Nathan’s body naturally do the work. Nathan had another scan on April 28th and we were pleasantly surprised to see that the tumor had remained stable! It was such a blessing because on May 16th we welcomed Sean Cooper to our family. We have all been able to enjoy a healthy summer with our new baby boy! Nathan and Samuel absolutely adore him and want to be with him every second. I am one lucky mom!
On June 2, 2012 Nathan had his first MRI and our lives were forever changed. Since then, he has gone under general anesthesia anywhere from every 6 weeks to every 3 months for MRI’s to monitor his tumor. There has not been one time when we don’t wake up on those days with worry and fear for how the results of the day will change our lives again. You have all walked his journey with us through these updates and your responses of love and support. His large team of doctors, therapists, and ourselves have monitored Nathan with great vigilance for almost 6 years. I have monitored Nathan’s symptoms to watch for small changes, we have gone to therapy 2-4 times a week, and we have pushed hard to help give Nathan every tool necessary to make it through his day with success. When the neurologist walked in to examine Nathan on Wednesday she asked how he was doing. I summed it up by saying, “I left my computer in the car and have not charted Nathan’s symptoms in 4 months.” She looked up, smiled, and said, “Well that is amazing!” When his oncologist walked in and got the report from her she said, “Beth did not bring her computer and has not charted Nathan’s symptoms since we saw him last. That is all you need to know!”
Well…I think I can finally say it out loud. It is time for a few deep breaths, tears of joy, and feelings of peace for the space we have been granted. Nathan’s scan last week was again stable and all of his doctors are pleased with is progress. We came home from Boston last night with all good news! We will for the first time hold off on any tests for 6 months. In addition, he has learned to coordinate his swallow well enough to take everything by mouth. At the end of the month, he will have his g-tube removed from his belly. This is a milestone that we never thought would be possible with the location of his tumor. Although he has been doing well, there is always a fear that the tumor would effect his swallow first or his oral aversions would limit his ability to have it removed. Every time we see Nathan’s tubie it is a reminder of what is going on in his brain. As a parent, you never get used to seeing a tube in your son’s belly. Years of therapy and diligent work at home have brought us to a safe place. When we left to go to his MRI last week it was the first time he said, “Why do I have to do this? Why do the other kids get to go to school and I have to go to the hospital?” We are so grateful the days of having to answer that question are becoming less and less.
The time has come to truly trust Nathan and take a significant risk. As I write this tears are rolling down my face because he has come to a place we have dreamed of and was never a guarantee. Nathan walked into his first day of Kindergarten this year happy, healthy, and medication free. My dear friend Lissa asked me how I felt about Nathan going to Kindergarten a few weeks ago. My response was that this is what every family we have met from the hospital wants for their child. It is not a sad time or a time to worry, it is a celebration of life. It is a celebration that he is alive and healthy enough to go to Kindergarten. When he walked into Wexford Elementary school with a smile from ear to ear and a bounce in his step, I knew it was time for tubie to come out, get another stable scan, and realize how far we have come. When you ask him why he likes school his immediate response is, “I love to learn mom.” Nathan has learned more about hospitals and procedures than any mom wants for her child, but it has made him who he is and I would never change a thing. The doctors appointments and therapies will not change because Nathan has to always do a little extra to keep up with the demands of his day, but we will do it with confidence that it’s working. When I saw him with his Boston cousins at the pool on labor day, I knew it was working. He kept right up with the kids and laughed his way through the day right with them. It was awesome!
Today we wake up after another exhausting two weeks of appointments and travel, but our hearts are dancing and our minds are not cluttered. We are just thankful! It’s time to get ready to go to Kindergarten…because he can!
Thank you for walking with us every step of the way!
Love,
Mike, Beth, Nathan, Samuel, and Sean!
P.S. He just said to me as I finish typing this, “Mom, I think it is time I start using an adult plate.” I guess he heard my thoughts that it is time to move forward!
First Day of Kindergarten at Wexford Elementary School
First Day of Riding the Bus!
MRI day with baby Sean
Brother love in Boston
Flying home to Pittsburgh with all good reports
