‘A HUGE blessing from above’ is the best way to describe Project Joy and Hope. PJH will forever hold a special place in our hearts.
When I was 24 weeks pregnant I received high risk imaging as a “just in case” due to what looked like fluid in baby’s kidneys, instead the findings of the sonogram brought the most terrifying & unexpected news of our lives. Our unborn Baby girl, Kinsler had a very large and rare life threatening tumor on her tailbone called a Sacrocoggyeal Teratoma (SCT). This condition has no known cause and only occurs in around 1 in every 40,000 live births. She would need to be delivered via C-section, have an extensive surgery to remove her tumor & reconstruct her bottom, and then be cared for in the NICU.
After doing research and exploring our options we read and heard so many great things about Texas Children’s Hospital in Houston. With cardiac failure being very common with SCT we knew we’d eventually need to relocate to Houston and continue to see doctors and specialists at least weekly to monitor the tumor as well as heart function until our little girl was delivered.
Among the numerous unknowns was the biggest of them all…would we even be able to relocate to Houston to give our baby the best care possible, how would we afford it, where would we stay, what about our other two children? The social worker at TCH mentioned many different housing options only one of which met our needs as a family. I called Project Joy and Hope with very little notice and not much time before we needed to move, fully expecting there to be no room for us. After speaking with Dr. Wheeler one time and telling her our situation it was clear to me that regardless of room availability she was going to do everything she could to make things work for our family.
Seeing the unit for the first time and meeting everyone in person was magical. There were toys waiting in the “kids” room for our two little boys, fresh linens on the beds and in the bathrooms, playing cards on the bar, dishes in the cabinets, everything truly felt like a home away from home.
Throughout our stay we were nothing but loved on by everyone around us. We had the blessing and opportunity to go to Dr. Wheeler with absolutely anything & we knew she had our best interest at heart. Our boys played tball in the yard outside of our unit and enjoyed the PJH playground everyday! When a hurricane hit during our time there and we lost power and all of our groceries the PJH staff did everything they could from cleaning out our fridge and freezer, to providing us with a gift-card from a sweet supporting family to replace our food.
Selflessness and compassion radiate from the team members and without their support our journey and our daughter’s medical care would not have been possible. I cannot express enough gratitude and love for the PJH family. Thank you a billion times, we will never forget your kindness.
JoAnn Pirkle & Family