Jo had her ups and downs at the beach this past week. She unfortunately spent much of the week nauseated and on the couch. She did have some great and shining moments. Times out with just her family, times on the beach and at the pool with her cousins, and time to relax and talk with everyone. She did lots of cooking in the sand as Jo loves to do, rolling sand meat balls and making sand pizza. Yum. When she felt well enough she would get up and pass out kisses and hugs to everyone, always spreading love. There was no better sound or moment for me than having Jo walk up behind me and give me a tap. I would turn around and see those big blue eyes looking up at me, peeking through her strawberry-blond bangs, her arms outstretched, "hug hug Uncle Jeff," she would say. I squeezed her hard each time and never wanted the moment to end.
Midweek, Matt and Alissa took Josie to Washington DC for another treatment. They were gone overnight and we all got to enjoy Sam and Josh, giving them some extra attention and TLC. When Jo returned, she seemed to have even more nausea. Her shunt was acting up before the trip and had to visit Hershey. The doctors thought it was flushed out and functioning well. This past Sunday, Jo really started to feel poorly and Matt took her to the Reading ER and then up to Hershey. She had another operation on her shunt to fix a blockage and repair both sides of the shunt. We are hoping and praying that this gives Josie some relief from her headaches, lethargy, and nausea. She handled everything like the super star patient she has always been through this ordeal. She fights hard and loves hard, just like her parents.
There is no quit in this fight. There is hope. This new drug has great promise. We just need Josie to be in the fight long enough for this drug to work its miracle. We will get there together, as a family, and as a community, rallying around a very sick but very special young lady whom we all love and adore. Thank you all for your support. I can't say enough how much it means to Matt, Alissa, Josie, Sam, Josh, and our entire family. XO