Overcoming challenges
Dearest family and friends,
Did you miss our daily updates? Well we have run into some interesting challenges writing the updates now that we are all home and together. Finding the time has become an issue. On Sunday the computer crashed and we just received the new one. Tech support did a great job recovering pictures and files. They say that life has many twists and turns, well we turned again today after we went with Catie to CHOP (Children’s Hospital of Philadelphia). Turns out she is even more unique than we had initially thought. The tumor they removed from Catie is not a PNET as previously thought, but an even more rare tumor called an ATRT (Atypical Teratoid Rabdoid Tumor or A Truly Rare Tumor). This “rare, high grade, aggressive” tumor is usually found in the base of the brain, and because of its type, Catie’s therapy will have to involve radiating the entire brain and spinal column.
We would love to tell you that we know exactly how we are going to proceed and that we have a schedule ready for you with many volunteer opportunities. We don’t. We are narrowing down our options. At this point we need your continued love, support, patience and prayers. We again want to thank you for all your e-mails, letters, cards and gifts for Catie. There are even a few that we would like to share with all of you. Catie’s 1st grade class pooled their resources and bought Catie an Ipod. She truly loves music so this will be a wonderful way for her to relax during whatever treatments she is given. Thank you so much for your generosity. If any of you would like to share a song that is particularly meaningful to you with Catie, please send her a card with the song and artist, or even an I Tunes gift card and Catie will think of you whenever she hears your song.
Over the weekend we received $1000 in gas cards from our old parish St. Aloysius in Pottstown. They are really thinking. The gas was adding up but we needed to continue to take Catie to and from the doctors and physical therapy. Kevin’s boss contacted Children’s Miracle network through RiteAid’s corporate contacts and they will be looking for ways to assist with expenses that will be adding up, like childcare for the 5 other kids while Catie and I are away for up to 6 months undergoing treatment, computers for Catie and our home so that she can keep in contact by webcam with her siblings and dad, and other expenses that we probably can’t even imagine. Please keep us in your prayers as we navigate uncharted waters of fund raising and asking for financial assistance. We have set up an account in Catie’s name to keep the expenses and income related to her care separate. So many new and exciting things to do and learn. My brother Sean commented that he and Pilar would be excellent at this portion of our journey as they are “professional beggars”, (a.k.a. fund raisers).
Even amidst all that is uncertain, scary and unbelievable; each day Kevin and I are amazed at the blessings we find and the peace that fills each of us. Today in the car on the way to the hospital Catie was singing in the backseat. Songs from a CD Kathleen and Emily Brady burned for her, she stopped singing and tapped on our shoulders and said “Mom and Dad I really love you and don’t you think it is really cool that we get to spend all of this time together?”
Catie continues to be an inspiration to us as her attitude and infectious smile give us strength. She calmly colored while Dr Phillips at CHOP filled us in on the news of the day and when we asked her if she understood what was in store for her, she just smiled and said, “Don’t worry, it’ll be ok”. Last night, Kevin and I were up at 3am crying and holding each other and asking God to just take all of this away when we heard Catie in the hall. She came into our room and climbed into bed between us and smiled and held us and told us that she was pain free and happy, what a blessing. We all said a prayer together and thanked God for waking all of us up at the same time so that none of us had to go through what we were feeling alone. That is the lesson in all of this…..we can and will get through this, but we need to do it together, as a couple, as a family, and as a network of friends and extended family. Thank you again for demonstrating in your love, concern, and support that we do not have to face this alone, we have you.
May peace and blessings fill your hearts and homes, and may God hold you in His tender embrace. Know that you are all in our prayers and Catie’s as well.
Christine and Kevin
