Day 57

As I knelt by the hospital bed in our bedroom tonight with Christine by my side, the fab 5 quietly entering and exiting the room, and Catie, one eye completely focused and her head bowing with each mention of Jesus’ name, we prayed a rosary together as a family and it was the most serene and peaceful I have been in weeks. God was truly present and with us as we knelt and prayed together as a family. I have prayed by myself, with one or two others, and with hundreds. I have prayed with this beautiful family that I have been blessed with hundreds if not thousands of times, yet tonight I felt the warm embrace of my Father as never before. What an honor. To gaze into this beautiful angel’s eyes as she reaches a state of intimacy with God is a miracle that she gives me each day, and today, she and HE allowed me to be a part of their special bond, it was truly beautiful.

Christine and I met with the hospice nurse today and conferred with the Quality of Life team at St. Jude. We discussed Catie’s condition and the changes we will need to make soon. She will soon lose her ability to take medication orally, and we will have to start giving her IV drugs. The fact that she is sleeping for 19 hours a day has its own challenges. When she wakes, she is behind the pain curve because it has been so long since she had had any medication, and we spend the first little while after she wakes dealing with pain control and her ravenous appetite. If you are only eating one meal a day, you can get sort of hungry. So we pack a great deal into the 5 hours a day Catie is awake. Dinner, a bath, changing dressings, taking medication, visiting with her siblings, reading a bit, talking a bit, and praying a bit, and then it is back in bed for another night.

We are humbled daily by your continued prayers and your messages that offer hope, love, and a commitment to remain with us as we follow Catie on her journey. Today was, according to Catie, a good day. The 5 hours she was awake were fairly pain free, she had no new losses of functionality, and she was still able to enjoy her food. Today’s fare included pasta, green beans, vanilla pudding, cheesecake, and of course, pumpkin pie. As we listen to her and she talks about a new pain here or a new symptom there, we attribute everything to her tumor. Whether it is or not, we may never know, so we bounce ideas and opinions off of each other and the medical teams, and make the best decisions we can. The apparent tumor progression is rapid, and indicative of just how tough and virulent this cancer is, and yet there are moments of hope and joy in each day. Can God still cure Catie and restore her to complete and total health? Of course. Will He? We will know soon enough, but in the meantime, today was a blessing, and Catie was still a part of it. Our job is to ensure that everyday we have with her is not wasted. What a gift she has given us to learn that lesson, have you learned it as well?

It has been 57 days since that Tuesday when we first learned of the tumor spread and stopped treatment. We have had two months to enjoy her. We can look at the last two months and see pictures of Catie and be saddened by what she has lost; mobility, eyesight, the ability to smile her trademark smile, the list goes on and will continue to grow. Or we can look at the gift of 57 days and realize that there are parents who lose children in car accidents and do not get 57 seconds to say good-bye. Tomorrow will be Day 58, and God willing, I will have another chance to hold my child in my arms and feel the rising and falling of her chest and be able to be blessed enough to witness her strength, her piety, her inner beauty, and her love. Every parent will tell you that the first time you hear your child say “mommy” or “daddy” it will melt your heart. As Catie lives from day to day, and her final day approaches, each day that I still get to hear her say “daddy” is a gift to be treasured.

Never without hope,

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

PS – Huddled by the fireplace in this frozen wasteland of a house, (Christine has this pioneer spirit and is waiting for Pa Ingalls to come and warm the house apparently, so we have the heat set at an un-Godly 60 degrees, (Fahrenheit, not Celsius) Christine has informed me that the above update is a bit of a downer. So here I will add a knock-knock joke. No, Christine doesn’t like jokes. How about a little funny from today. M.E. who went to bed right after dinner woke up an hour later calling “Mommy”. When Christine retrieved her from bed, the kid was flushed. (See above regarding house temperature, it wasn’t because she was warm). She had apparently had a reaction to something she ate, and we will have to experiment a bit to determine exactly what it was. That should prove interesting, we will keep you posted.

God bless you all!!

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