Good Evening!
I hope you are all enjoying a wonderful summer of relaxation, vacations, and beautiful weather. We have taken full advantage of each day this summer. We have tried to do something fun in Pittsburgh every week. Nathan now thinks every day should be action packed. The first words out of Nathan’s mouth in the morning are now, “Where are we going today mom?” I know life is going to come to a pause in the beginning of October when we welcome Nathan’s baby brother to the world, so we are enjoying being out and about while we can.
The last update I wrote was after Nathan’s MRI on May 12th, three months ago. This was the first time in a year that we went more than 6 weeks without Nathan going under general anesthesia for an MRI. I have written this particular update in my head many many times, but I was never able to actually write the words. Nathan has been on chemotherapy for two years. Today was the first time the doctors looked into our eyes, smiled, and said, “The scan looks significantly better than three months ago. There is a dramatic positive response to the treatment.” So now I can write what Mike and I have dreamed of since Nathan was diagnosed…THE TUMOR IS SHRINKING!! Why not write it just one more time…THE TUMOR IS SHRINKING! When they usually show us the scan it is like seeing a horror movie over and over. To see a large tumor in your baby’s brain is an image I would not wish on anyone. Today, I actually asked to take a picture of it on my phone because it was the most exciting picture I have seen in two years.
Nathan stopped the vaccine trial study in May and we started a chemotherapy called Avastin. We know this is a drug that kids can not stay on for long periods of time, but it has great potential in some cases. Nathan seems to be having the best possible response for this chemo. For the past three months Nathan has had to have IV’s placed every two weeks to receive his chemo treatments. The doctors thought this would be too hard on Nathan to get IV’s every other week, but he has truly stepped up to the challenge. He and Ms. Michelle, his IV nurse, have their little routine and he walks her through the process step by step. He is far braver than I am and says to me, “I don’t need to look away.” After she places the IV, he looks at her and calmly says, “Thank you Ms. Michelle for giving me an IV today.” I don’t know where he finds his courage and strength to deal with all of this, but he does it so well and never complains. He now knows that when we make the turn by Console Energy Center that we are going to the hospital. He gets it…he gets it all and never complains.
Although Nathan is doing extremely well, the past several months have been some of the most challenging months of our lives. Nathan’s neuro oncologist resigned shortly after Nathan’s last MRI. Unfortunately, she was the only neuro oncologist in western Pennsylvania. At a very critical point in Nathan’s care, we were left without a specialist. We have had to make some very difficult decisions on how best to care for Nathan. After many months of research and traveling, we have decided to move Nathan’s primary care to Dana Farber Cancer Institute in Boston. This decision did not come lightly, but after meeting the doctors there we knew what we had to do. The chief of neuro oncology at Dana Farber will now guide Nathan’s care with a level of experience and expertise that we believe is the best possible care we can get for Nathan. His case is complex and needs a team of experienced physicians who are able to guide his care with the most current research and years of successful treatment of Glioma tumors. We have a team of doctors in Pittsburgh who will collaborate with the team in Boston to help manage Nathan’s case here and administer all of his treatments. We will travel to Boston tomorrow to have his team there review the MRI and guide his care. We are not sure how often we will have to travel back and forth, hopefully only every 2 to 3 months. When we made the decision on who the best doctor was to lead Nathan’s case, we also made the decision to do whatever it takes to get the best care possible for him. If a permanent move is necessary, then that is what we will do to make sure we give Nathan every chance we can for a cure. For now, we are grateful for each day we can stay in Pittsburgh.
As we prepare for the arrival of our new baby boy, we are reminded where our journey began with Nathan. No one can prepare you for what we have had to face over the past three years. Unfortunately, there is nothing normal about your two year old knowing the words “tourniquet” or “IV”. He now gets so excited that we have to take his blood pressure every day. He has had to grow up way too fast, but at the same time he has made us stop and enjoy the simple moments of life. We have been given a gift to see life a little differently. It is days like today where God gives our son a gift that each and every one of us has prayed for and imagined, but never been able to experience, that make the other days a little easier.
We know every day and every scan will not be like today, but thank you God for letting us know what this feels like. Nathan is our most precious gift and today you gave us hope and peace. Nathan’s newest phrase is, “What the heck is going on here?” Although very funny, I often find myself looking up and saying, “What the heck IS going on here?” Today, I don’t ask why or how…I just say Thank You!
We know Nathan’s prayer chain is strong and you never forget our family in your daily thoughts. You never give up and you keep us strong. We love you all and thank you from the bottom of our hearts.
Love,
Mike, Beth, and Nathan
Summer fun at Phipps!
