Someone once told me that life was like the a cross stitch picture. That the happenings of our life were the series of stitches, crisscrossed thread and knots – basically, the complete mess that is the back of the canvas. She told me that only from heaven would we be able to see the front of the canvas. That only then would we see the beauty that each tiny stitch and knot had contributed to.
I suppose I believe that something like that is true. You see, I do not believe that things in life just happen without a greater purpose or without an opportunity for their redemption. Just like with cross stitching, I do not think there are random threads and knots all over the place. I think it feels like that to us sometimes. Feels as if our lives are just one big knot after another but I think that’s just because of the side of the canvas we are looking at. In the end I believe we will see the finished product – a pulling together of all threads to make something beautiful. Even threads of pain. Even threads of heartache. Even threads of the most unfathomable loss.
Today, with the recommendation of Izzy’s medical team we made the decision to end chemotherapy. She will begin her final cycle next week and after that we will wait and see what happens. They essentially told us we would “wait for the cancer to return.”
The chemotherapy that she started in the summer of 2015 put her in remission and has kept her there. Stopping it is a complete risk, perhaps the biggest risk I have ever taken in my life. But not stopping it brings risks of its own. Eventually her body will develop a resistance to the drug and so the tumors will begin to grow again anyway. If we stop before her body develops a resistance, the chemotherapy could potentially work in her again.
The problem with High Risk Neuroblastoma is that after relapse a chemotherapy only works for so long. After a resistance is established to one, you try a second. Once resistance is established with the second you try a third and so on. You continue until there is no longer one to try or until the side effects simply become to unbearable. We have been told this many times and it never gets easier. Making the decision to stop feels like jumping off a cliff and just waiting. Will there be a parachute to catch us or will we crash violently into rocks and waves along the rugged coast?
Of the 365 days of the year Izzy will take her last dose of chemotherapy on December 23rd – the five year anniversary of her diagnosis. On the five year anniversary of the day that changed our lives forever we will close out another season. That day we will also go downtown and pass out Christmas gifts to the homeless per Izzy’s request. We did it last year and this year we have decided to make it an annual tradition. We will choose to take what the enemy tried to mark as a day of PAIN and turn it into a day of LOVE. Choose to GIVE on a day we remember all that has been TAKEN.
We went away this weekend to a hotel with an indoor waterpark. Izzy ran around like every other child there- full of joy, full of life. Late last night I watched her play in the wave pool, waves crashing up against her little frame. From out of nowhere a baby girl, probably around one, walked up to me and smiled. With blonde hair and blue eyes she reminded me so much of Izzy when she was that age. Soon Izzy found her way back to me and soon the baby girl found her way to Izzy. They began grinning back and forth at one another, making faces and laughing. Izzy loved it.
Eventually the little girl wandered out into the water, just far enough that the waves washed over her feet. Izzy followed and the two stood side by side for a few moments smiling and watching the water grab their toes.For just a moment time stood still as I watched the two together. I looked at the baby girl on my right and I remembered all that I had wanted for my own baby girl. I remembered the innocent way I had once held her and rocked her and dreamed of what her life would be like. Then my eyes went back to my own daughter, her frame so slender, almost bony from the effects chemotherapy has had on her appetite. I looked at her thinning hair and then I began to cry. I cried because her life did not turn out the way I had expected. I cried because I was jealous of the baby girl and the life that was most likely ahead of her. I cried because I now know a pain and a fear I had never known when Izzy was that little.
Soon Izzy raced back to me and I held her close, wrapping her in a towel. I dried her off, put on her cover-up and she told the baby girl goodbye. We walked away leaving them with their innocence and their dreams. We walked away with fear of our future as they stayed and played with hope for their own.
We have a plan for now until December 23rd and after that I don’t know what to expect. I do not know what December 24th or the days that follow will bring. I know only two things for sure:
1. God is and always has been faithful – not to give us what we want but to walk with us through the good days and the bad.
2. We must always walk forward with hope even when we have been told there is none – ESPECIALLY when we have been told there is none. Because what we do when there is no hope, how we choose to live in darkness, THAT is what defines us.
I have watched as it has defined Izzy and I can tell you this: Witnessing the creation of the cross stitching that is her life, even the messy and tangled side I can see, has been the greatest privilege of my own.
Blessings on you today and LIFE for Izzy.