Life Updates

Life has been quite a whirlwind for Nolan and our family. We began January with the clinical trial which consisted of weekly visits to the CHOP day clinic for chemo IV treatments along with daily doses of various medications. It took some time, but Nolan finally got used to swallowing meds and getting poked weekly for chemo and standard bloodwork. Once we got a rhythm we were hit with news that Nolan had some growth in his spinal tumor. His trial doctor was concerned that he may start to notice symptoms from the spinal tumor and pushed us to consider another try at radiation. Nolan had proton radiation in 2023 following his first brain surgery, After careful consideration we decided to pursue additional radiation. This time considered CSI, cranial spinal irradation, we were told it would be more intense and targeted. In April we began almost daily (Mon - Fri) trips to UPenn Roberts Proton Radiation treatment center. It was an exhausting and grueling schedule, going before school and work started at 7:30 am, eventually we got in a rhythm (thank you Maimey and Pop Pop for taking some of the load and taking Nolan to give Brian and I a break) and Nolan, being the champ he is, took everything in stride. Passing the time of his sessions with a playlist filled with Kendrick Lamar and Eminem. We continue to be amazed by his resilence and ability to take each day as it comes. Doctors were impressed that Nolan continnued to play soccer and attend school most days. We were happy that Nolan experienced little of the side effects we expected. Nolan completed radiation on May 22nd. We get to spend the next 6 weeks allowing his body to come down from the raditaion and awaiting our next set of scans at the end of June which will hopefully show disease control (i.e. no new growth) and maybe even shrinking tumors.

In a couple of weeks Nolan will be moving up from 5th grade and getting ready for summer. We plan to make memories, travel and enjoy the summer. We are thankful for continued support from our amazing community who have continue to show up for us in ways we never imagined. A dear friend and fellow cancer survivor parent created a go fund me for us and we are astounded by the generosity provided to us. We hope to report back with some positive news in the near future.