Hello to our dear family and friends!
We wanted to give you an update on how things are going with Nathan. I thought holy week and the beginning of spring was the perfect time to give you an update and thank you for your support. May 3rd is the one year mark of starting the MEK inhibitor clinical trial. The last update I gave you was in October when we first learned that Nathan may be having a positive response to the treatment. Since then, there have been quite a few challenging months and scans that were not as promising as we thought they would be. Through long conversations and evaluating all the options on the table, we decided to continue on the trial. Two weeks ago, Nathan had his one year scan and the results were very promising. The tumor is measuring stable, but the overall appearance and size seems to be smaller since starting the trial one year ago.
As we have learned in the past, it is very difficult to give a conclusive and consistent assessment of Nathan’s tumor response to any given chemotherapy. The imaging is not always consistent and clear enough in his location so many of the reports are left up to interpretation of the radiologist and other physicians on his team. We have many eyes on Nathan’s case and we always feel that we have enough information to make the best decision possible at the time. His oncologist put it best, “This drug is not a home run for Nathan, but it is very positive news that gives us more time to reevaluate in three months.” We are extremely grateful for any baby steps in a positive direction. Nathan has exhausted a lot of therapies for a little guy, so it is important for him to be able to remain on the same drug for a longer period of time. His tumor is stubborn and in a high risk location which makes getting an effective nonsurgical treatment challenging.
Due to the promising scan this month, he is eligible to continue on the chemo for the second phase of the trial. If the tumor continues to stabilize, we will consider coming off therapy at some point to see what it does. Nathan will then be classified as a patient who had a positive response to MEK inhibitors. This opens doors for him to be entered in other trials, stop and start commercially available options of MEK inhibitors, and continue to explore other rapidly developing drug options that attack this pathway. Our every prayer over the next three months is that the tumor continues to remain stable so none of these doors close for Nathan.
Unfortunately, this chemotherapy has come with significant side effects and challenges for Nathan. The way he navigates his days has had to change considerably, but as always he finds a way to push through and do his best no matter what. He has done a remarkable job of adjusting the way he moves, plays, fights through extreme fatigue, and deals with the physical and emotional challenges of this therapy. In addition to all of this he has traveled to Boston 14 times in the past year and has had three hospital admissions in just the past three months. His happy place is at Wexford Elementary school. He is so motivated to fight through the side effects and get himself to school every possible day he can. During his last admission he just kept telling anyone that walked in the room that he needs to get out before his school play on Thursday. I hope this never changes!!
In December, our family decided to make a significant change in our lives to help Nathan and the rest of the family. We were not looking, but we found a new construction ranch home that was still in Pine Richland and Wexford Elementary borders. We moved quickly on this and put the house for sale. We moved into our new home on March 21st and it has been amazing for all of us. It is one floor so we can all be together as a family and not have to worry about all the challenging obstacles in Nathan’s way. Adding a move to this busy year was certainly not what we intended to tackle, but we are all so happy here. We truly believe God put us right where we are supposed to be at this time in our lives. Our family and friends have been amazing to help us quickly pack boxes, get the house ready to sell, watch the kids, and do all the little jobs that come with getting us from point A to point B. We were definitely not ready to move, but we are slowly getting settled and enjoying this fresh start.
As we approached Nathan’s last scan I just kept asking God to give us a chance to fight this tumor. It doesn’t have to be the easy road, just let us keep going. He answered our prayers and now we will do everything necessary to help Nathan continue to be successful while taking this chemotherapy for hopefully another year. We know he is always in your thoughts and prayers. We know that if there is anything we need you will be there for us. Thank you for continuing to walk by our side as we move forward.
We wish you all a very blessed Easter and Happy Spring!!!
Love,
Mike, Beth, Nathan, Samuel, and Sean
Our New Address:
310 Macintosh Drive
Mars, PA 16046
The day we closed on our new home!
First bus ride!
Saying goodbye to Lloydmont
Our final walk through in our old home
Nathan as Farmer Jones in the 1st grade play
