Day 7

As I prepare to leave St. Jude I am filed with emotion. Kevin and I have been asked by many friends “what is next?” Others have questioned “how can you just go home? why won’t you continue to fight for Catie?” We knew coming down to St. Jude would offer Catie her best chance at “survival”. When I first heard that word I felt a twisting in my guts that brought tears to my eyes. I didn’t want Catie to just survive. I also remember hearing and being shocked at the word remission. Once this treatment is over we are done – life back to normal, right?

Cancer promises nothing. The doctors, God bless them, do their best often times knowing that hope is a crucial part of treatment. Kevin and I spent the Thanksgiving holiday focusing on our blessings, as did most of you. We embraced our family physically and emotionally. We have been blessed. The results of Catie’s most recent MRI don’t change that fact. We are still blessed. We were blessed when we found out we were going to have another baby in 2000 – Catie. We were blessed when she came into our room in pain this past May. We were blessed when we discovered that she has a tumor inside her spinal column. We were blessed when we were told that the tumor was malignant and that it was an ATRT. Why would this latest news change that? Catie cannot be cured by the doctors or anyone in the medical community. We are still blessed.

So what is next? We are going home. We are not going to give Catie any more chemotherapy. There are some chemotherapies available but after what Catie has been through, the high dose radiation and chemo, the tumor came back. What is the compelling reason to continue to subject Catie to more? There is no cure for Catie coming from medicine. God alone has the answer. He is in control and He has a plan. God promises everything. God promises eternal life.

Now I don’t have a firm handle on the theology behind eternal life but I have faith. I believe with every moment I spend watching my precious Catie light up a room, or inform an adult in a matter of fact manner that her tumor is back, or close her eyes in prayer that I am witnessing something amazing. These days we carry Catie to and from the bathroom, into and out of the car or bed wherever her wheelchair can’t take her. I have found a patience within me that I never knew existed. I willingly pick up my daughter. I cherish the life that is still within her, I smell her, I feel her warmth, I am poked by her bony frame and I am honored to help her in any way that I can. Catie is bringing me closer to God. I feel no bitterness and I am not angry. I am still filled with hope. I still believe that God will cure Catie – either here or in heaven.

Dr. Armstrong, Catie’s neuro oncologist, asked me if I was OK or ready? How can you answer that? I pray that I am up for the challenges that await us. Each day Catie and I talk a little more about what is going to happen. Each day one of the other children comes into the room in the middle of our discussion and we ask each other if we are going to die. I realize that this sounds crazy and it may be but I don’t want Catie to be afraid and I think that often times we are afraid of the things that we don’t openly talk about – like death or sex. Death just seems more appropriate considering the ages of our kids. Each of the kids tell me that they are going to die and then I ask them if today is the day. They answer “no” and they then discuss how they are going to live this day.

Today we lived the day saying good-bye to everyone, except Mia and Aunt KC. Catie made her first pumpkin pie and just woke up at 1am for a snack of pumpkin pie. We opened our Advent calendars and began to get ready for Christmas. Today at the hospital we met with the Quality of Life team. Dr. Baker is going to help transition us back to PA. He and Angela Synder are going to get the house ready, the hospice team ready and the hospital at Hershey ready for us. Angela asked if Catie wanted a hospital bed and I said no. When I mentioned this to Catie at dinner she lit up like a Christmas tree and said “you bet I want one.” At home some things will need to be re-arranged.

We have some time to make arrangements. Catie is good. She is looking forward to a few things and she is enjoying her visit with Aunt KC and Mia. We have known about Catie’s tumor regrowth for 7 days and it is part of the road that we are now traveling. Thank you for joining us and thank you for your prayers.

God bless from St. Jude,

Christine, Catie and Mia

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