Rally 1...
On May 18th, our family and friends gathered together to walk for the Friends of Philip team in the Liver Life Walk Long Island at Eisenhower Park. When I joined up for the walk I never thought it would turn into what it did. I thought a few friends and family would join me and we would have maybe a 10 person team. Well our family and friends rallied together and close to 200 people came out for the walk and raised to date $15,282.14. And the donations are still coming in. It was an amazing day. The weather was perfect and we had an amazing picnic thanks to the FDNY and Massapequa Fire Departments. I was filled with emotion seeing how many people came out to show their support for us and our family. I still get teary eyed thinking about seeing the crowd of Friends of Philip shirts and Philip cutting the ribbon to start things off. It is so easy to feel alone with the whole situation and that just reinforced that we are and will never be alone on this journey. We even made some new friends and met some others who had Biliary Atresia and had transplants and are now 20 somethings in college. It was an incredible experience from start to finish and I hope to continue to raise money and volunteer for the American Liver Foundation. Maybe some day there will be a cure or a way to screen for the disease so children can get the help they need earlier, giving them a better chance of living a longer life with their native liver. Thank you from the bottom of our hearts again to everyone who participated and helped with organizing this amazing day. I am truly humbled and will never forget the day.
Rally 2…
A few days after the walk we saw Philip's doctor and she noticed his liver and spleen were a little larger than before. I've also noticed him being a little more distended. So we had some blood work done and she told us that maybe it was time to pick a transplant center to meet with. If just to start the talk and get to know them and them know us. So there we were researching between Mt. Sinai and NY Presbyterian driving myself crazy because I felt that whichever decision I made I was deciding his fate. If God forbid something doesn't go right it will be my fault for choosing that center and doctor.
Anticipating his bloodwork would get worse, we waited for the doctor to call. Well, we spoke last night about the results and somehow Philip rallied and it improved!
OK maybe improve isn't the right word but it got better by a few points on a few and stayed around the same on others. SO the doctor said with it staying the way it is, it is still too early to meet with the transplant team. Philip continues to be a fighter! Amazing news! We'll take it as long as we can.
