Hello from the Leckey House!
Wow, all of our lives have been drastically changed in the past 7 days! I started to write an update last Thursday when we returned from Boston, but then we went into task mode of adjusting to the new lifestyle that each of us is trying to understand. We now hear the words “new normal” every time we turn on the tv. I have used this term many times in our updates as we have had to adjust to new medical plans for Nathan over the past eight years. Unfortunately, we have sat through countless appointments were doctors give us news we don’t want to hear and we have to learn all new drugs, administrations, appointment schedules, side effects, etc…Well, this time we get to adjust to a positive “new normal” for Nathan for the next few months. Although our country is going through a time that I can not even begin to put into words, we are trying to find joy in our days and appreciate the gift of positive news and medical freedom for Nathan.
I have been writing these updates on Nathan since he was 6 months old. Over the past several months I was hesitant to continue writing about Nathan because he is old enough to understand what is going on and I want to respect his privacy. He has his own deep fears, realizations, and questions about his diagnosis. He understands his diagnosis is serious and will always require medical care. Before bed last week he said to Mike and I, “It is my life mission to get rid of this brain tumor.” We just held him tight and promised him our life commitment is to always find him the best doctors there are to take care of him and we all share that same mission.
A few weeks ago he decided to google his name and his blog came up. He started reading it and said, “Mom, did you know I have my very own webpage. This is pretty cool.” He then started asking a million questions about how he can add to the blog and he started taking over editing pictures and entries. I told him there are many people who follow his story and are constantly praying for him and they want to make sure he is ok. Mike and I decided yesterday that if Nathan wants to continue to share his story then he is old enough to tell it in his own words.
Today, Nathan wrote his first update:
Two years ago I started on a clinical trial called MEK 162 in Boston. I have traveled there almost every month since May 2018. When I go to Boston I see my doctors, go to a lot of appointments, and best of all see my cousins. I like when my brother Samuel comes along. I have taken my chemo twice a day for two years and last week I was able to take my last dose of medicine because the trial has ended. I had an MRI on March 11th and it said I had a good scan. When the doctors told me I felt really happy. I am excited to be running and doing everything I was able to do before I started my medicine just like my two supportive brothers, Samuel and Sean. It looks like I will have a lot of time to do what I want because I don’t have to go to school for awhile. I have had fun being able to take walks for the first time in a long time, play outside, build legos, and play with my brothers. Thank you for taking your time to care about me. I feel amazing!
Now, I have to get back to eating my favorite snack, cheetos, and reading Harry Potter!
Love,
Nathan
As we all continue to adjust to the “new normal” of our country and manage our fears, worries, and emotions please remember that you are not alone. Our family has gone through many ups and downs over the years and we always get through it because we feel loved and supported by all of you. We have said it many times, it takes a village to raise a child. You are Nathan’s village and we are so grateful he knows your love.
We will continue to pray for all of you!
Love,
Mike, Beth, Nathan, Samuel, and Sean
In the healing garden at Dana Farber Cancer Institute
Final picture after he was done with his tests.
On our first walk in the neighborhood after stopping treatments.
