The road ahead

Good evening family, friends, and prayer warriors,

Catie and Christine had a wonderful day today. Catie has done so well with her physical therapy. Today’s events included walking outside on uneven ground, up and down hills, all while making sure that our head and spine were aligned correctly. She walked up and down stairs and on stones. She sat on a ball and had a catch with Christine while marching her legs up and down, (I tried this while no one was looking and fell). She continues to amaze us with her determination and can-do attitude. The Catie we know and love, with the 100kilowatt smile and dancing dimples has returned, and we are so pleased, thankful, and blessed to have her back. She will have one more PT session and a quick CT scan tomorrow, and then the plan is for her to return home tomorrow night…..quite a week!!

Unfortunately, she will need all of her strength, attitude, smile, and your prayers for the road ahead. The pathology report confirmed our worst fears that not only was the tumor malignant, but is a very rare and aggressive type called a PNET (primitive neoroectodermal tumor). While this type of tumor is somewhat common as childhood cancers go, it usually presents itself in the brain or brainstem, and the treatment regimens for those presentations are fairly well documented. Catie’s tumor being found in the spinal column is one of less than a dozen cases that anyone can find…ever…….this may add a layer of guesswork to the treatment. As we will have only one shot to get this right, (no documented cases of a successful outcome from a relapse), guesswork should be avoided at all cost. The oncologist as Hershey is going to a conference next week with the top people in the field, and will present Catie’s case and ask for help in developing a treatment regimen that will keep her alive and give her the best shot for a future. In the meantime, we are going to gather all of Catie’s records and bring them to CHOP, and from there to wherever we need to until we find the treatment that will keep her with us. Whatever the treatment is, it will most likely involve up to a year’s worth of inpatient and outpatient testing, chemo, radiation etc. She will miss school, she will lose her hair, she will feel at times like she will never again be a normal kid. She will feel things that we cannot imagine and would never wish on anyone, and I am sure that we will feel like the worst parents in the world at times for what we will be subjecting her to, in order to keep her with us. There will be times when doubt will cause us to second guess our decisions, we will need your prayers more than ever at that point. With all of the optimism I can muster, I can picture a future where Catie has survived this and I am walking her down the aisle with Christine and presenting her to a man who will love her as much as I love her mother. But childhood cancer leaves a trail of destruction in its path, so please pray for the strength of our marriage and parenthood as we embark on a journey of discovering an uncertain future.

For now, we are grateful for so many blessings. Catie is getting stronger every day, and is going home tomorrow. We are planning on getting the other kids on Thursday so that Mia can go to a party on Friday (thank you Mom-Mom and Da), and then we plan on having a great weekend picking raspberries at the organic farm, (communist collective) that Christine found for us. Next week we will do as much investigating and consulting as we can, and if Catie can handle the drive and we are not on our way to Philadelphia, we will head down to South Carolina to see Grammy and Poppy, Aunt Lynn, Uncle John, Austin, Douglas, and Anna.

We thank all of your for the love, support, assistance, and offers of assistance that you have shown this past week, (yes, it has only been a week). We have been blessed by all of you and are touched by the outpouring. You are all wonderful examples of God’s love present in our everyday. Go hug your kids, kiss your spouse, tell the most important people in your life how important they really are, and forgive that person who has hurt you, (even if that person is you). Each day we have is a blessing and an opportunity, make the most of it.

Peace and God’s blessings,

Christine and Kevin, (and Catie)

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