Thanks for joining our journey

Hello to everyone of our family and faithfilled friends and those of you who share our story as it has been forwarded to you:

Thank you for your continued prayers. So many people have asked me how and why this has happened to Catie; I’d like to think the answer is coming to us in bits and pieces. The good that is being witnessed, the faith that is being openly shared, the small things that used to upset me, and possibly you, which no longer seem in anyway important enough to even notice…and the list goes on.

Kevin sent an email that asked the question, “why not us?” (if you missed that update, let us know). Each day that I am with Catie, I am blessed to see good that is coming out of this situation. Yesterday at mass, the 1st reading fron Isiah, “my word shall not return to me void, but shall do my will, achieving the end for which I sent it”.

Kevin and I requested that in addition to your prayers, you tell us how you are and I would like to add, tell us what you have witnessed since you have joined our journey. Even if you do not know us personally, tell us how you learned of Catie’s story and then explain what you have witnessed, it lifts us up! For me personally, that has been one of the hardest parts of being down here, I’ve lost some of the connection. Please send Catie notes, let her know what you are doing with your summer, color a picture and tell Catie what it makes you think about. Naomi, a girl in Catie’s class crayoned on a piece of yellow construction paper, she wrote the following message: 3 things about your smile; your smile brightens my day, your smile warms my heart, and it is a sign of friendship. It hangs on our refrigerator with a photo of Catie and her cousin Austin. Send us photos, we will cover the fridge! (for those of you who know me, can you see the change?)

Fior Catie, the most difficult things were the days without food because of testing, (should be over tomorrow!), having no one to play with, (she is one of six, there was always somebody to play with), and now there is only me. All of her frustrations, anger, sadness, joy are focused right here, which is ok with me, but frustrating for her, your prayers help, please keep them coming.

This weekend was good. She misses everyone. Taylor has set us a rotating schedule to bring down each of her sisters and Max on the weekends. All treatment runs Monday-Friday and this place is like a ghost town on the weekends, so we believe visitors will help.

On Saturday, (pay attention, this is convoluted), my sister’s husband’s bosses’ daughter and family came to visit Catie and me and take us out to play. Jessica and Jason Rhea, Katie (6), and Jackson (almost 3), thank you! We went out to eat at Catie’s now favorite restaurant, cracker barrel, for pancakes. We played on the playground at Target House, it is massive and fun, but so far has seemed deserted. Katie and Catie ran all over climbing, sliding, and laughing. Then we went back to the Rhea’s home for a nap for Jackson, adult conversation for me, and hide and seek for the girls. We also visited a park and went shopping for some awesome organic food at Wild Oats. The Rhea’s returned Catie and me to Target House exhausted, but thrilled to have a local friend.

Sunday was a quiet day. As we stayed at target house, we realized just how empty it is on the weekends. Catie played in the playhouse, craft room and on the playground with me. Then I made her come down to the gym with me where she jumped on a trampoline for 30 minutes. This is a beautiful place but it needs joy and laughter. God, is that why You have sent us here?

Today we meet with the doctors for the test results. In the meantime, keep us in your prayers, send us news from your homes and lives and tell us what you have witnessed as you share Catie’s journey with us.

Christine

 

On the homefront, the fab 5 had swimming lessons and did their best not to irritate each other as Aunt Colleen and Megan tag teamed their way through another Monday. The schedule for visiting Tennessee started filling in, and it looks like if Max can ride his bike from Mechanicsburg to Hoboken, NJ, he and Uncle Bill can catch a flight to Memphis together. Thank you Uncle Taylor for arranging the visits.

We did indeed meet with Dr Armstrong today with Catie and Christine in his office and me on the phone. The great news is that the MRI shows no metastatic activity or spread beyond the initial tumor site, so nothing in the leg and nothing in the brain. What that means is that Catie’s radiation therapy will be cranial-spinal, but that the radiation doses to the brain will be lower than the high doses delivered to the spine (tumor site). This will hopefully mitigate and lessen the cognitive impacts to Catie. Catie will indeed be a trailblazer as she will be the first survivor on the St Jude protocol from a spinal ATRT tumor. Your prayers at work here my friends, the light at then end of a very long tunnel is the promise of a new day, and not an onrushing train; THANK YOU. At the end of the conversation, Dr Armstrong presented us with a consent form with 27 PAGES of risks, side effects, possibilities and warnings, “just sign here and we will subject your child to the following poisons and toxins”. I remember reading Lance Armstrong’s book about his battle with cancer, and the doctor telling him that with the “treatment” they were going to use on him that they were going to “kill him” and hope the cancer dies as well, and then they would begin the process of bringing him back. Lance was a world class athlete when they began treating him and his conditioning assisted him in his recovery, Catie is a 7 year old kid, and the process will be the same, in fact, they will be harvesting some of her own stem cells to use when they begin the process of building her back up after the first dose of chemo in October. What advantage does Catie have to allow her to win this battle? She has an amazing spirit, and she has you, her prayer warriors. This story is at this point less than a month old, and it will be a long 9 months of treatment from here, but we know how this story will end………in triumph.

May the God who has blessed us with all of you, in turn accept our prayers for each of you and may you have peace this day in your hearts and homes,

Love and God bless,

Christine, Kevin, Maggie, Max, Catie, Mia, Molly, and M.E.


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