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May 09-15

This Week

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We thought it was time for an update on Claire! 

Everyone that has been following along with Claire’s journey knows that she got clear scans in November 2020. She cleared late into her journey and although we are extremely grateful for that, we weren’t content just being done. Many Neuroblastoma families choose to go on to post-maintenance therapies to prevent a relapse. There are currently two options families can choose from; DFMO (which is a pathway inhibitor drug) or a Neuroblastoma vaccine, only offered at Memorial Sloan Kettering in New York City. We know how important the immunotherapy portion of Claire’s front line treatment protocol was to clearing up her cancer, so we felt the vaccine was the best choice for Claire. After many, many phone conversations with Claire’s lead oncologist at American Family Children’s Hospital, we felt Claire was in the best possible place to seek this additional treatment option. 

Ted and Claire left for NYC on April 13. They met the MSK team and on April 15, Claire received her first of seven Neuroblastoma vaccine shots. It is a painful shot and our Claire once again proved her willingness to continue to fight. We didn’t have a choice in any of Claire’s front line treatments. This extra post maintenance therapy was our decision, and it was difficult for us to see how tough the shot was on Claire. Claire traveled to NYC three weeks in a row to receive a shot in the leg each week. MSK warned us that Claire’s leg would have a site injection reaction, possible fever, and leg pain. All of those proved to be true. Lucky for us, since Claire no longer has a central line, a fever isn’t an automatic hospitalization. Claire finished her third shot last Thursday. We go back in June for her 4th shot. Shot #5-7 are spaced out over the course of the year. 

Our trips to NYC were quick but a few highlights were: 

-Flying private for the second and third trips thanks to the Corporate Angel Network. Claire and I were the only passengers on a Gulfstream G550 jet! The pilots warmly welcome Claire on board. After going over the safety protocols, the co-pilot looked at Claire and said, “Claire, this is your airplane today, enjoy it!” Claire made sure she found all the good snacks on board. That’s our girl... she loves to snack! We are so very grateful to the companies that donated their jets and pilot’s time to safely transport Claire to and from NYC. 
-Claire and I had our first Amazon Go shopping experience. Claire felt like we were stealing our groceries. I reassured her by showing the Amazon charges on my phone. :) 

Claire’s 3 month post treatment scans are coming up in late June.  We continue to pray she will be clear. Although we love to travel, I think we are all ready to be home for the month of May. We are looking forward to Claire’s first soccer game since her diagnosis. We know her stamina won’t be the same at 
first, but so grateful she can get back to doing something she loves. She has come a long way! 

Thank you all for your continued prayers and love! We are so blessed to have you cheering Claire on through this journey. 

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