Taking Away the Chemo-Crutch

Amber is mom to Julia, another Wilms warrior. The following post is her take on being off-treatment (OT); turns out it's not as easy as you'd think.

End of treatment was definitely a hurdle for us. Julia has just passed the one year OT mark. We felt all the emotions of fear because we were no longer actively fighting the cancer anymore. We also did not have the security of weekly trips to the clinic for reassurance, encouragement, and answers to our questions. There was also a sadness in leaving our clinic family- the nurses, child life staff, art and music teachers, doctors, and other families are a family to us now and it was hard, especially for Julia, not to see them regularly. You feel like a baby bird being kicked out of the nest. It is natural and needs to happen. When you try to fly, you find your wings are damaged from all you have experienced. You will find a way to fly one day. It may not be pretty and it will not look like everyone else, but you will fly. And in the future you will catch yourself soaring above the trees and smiling.

Being off treatment was also the first time we began to really process everything. During treatment, God really protected us from fully feeling what was happening. I would look back and read blog posts I wrote or look at pictures of Julia and it took my breath away- especially the ones from surgery, transfusions, illnesses, etc. God protected us from really seeing her the way she was. I had many days of depression in the months following. Some days we hardly got out of our pjs and got very little accomplished. It's all a part of the PTSD cycle. When you have been through a trauma like this you have to "feel" it and work through it at some point. There are still days of tears or surprise emotions, but as time goes on, they get fewer and farther apart. If you avoid it now it will come back later. Unfortunately, like cancer, this is part of the fire you have to walk through if you want to come out on the other side and begin to walk away. There will still be sadness, especially for the suffering and loss of other kids you know with cancer. Scanxiety is still very real. A fever will never be just a fever and an illness will never be just an illness. We have found ways to get positively involved with other cancer families and causes and it has been very empowering for all of us to be "doing" something to conquer this beast.

The kids also went through their own process. They both had questions and fears about what had happened and it all came out slowly (my other child is 6). It was the first time we really had a chance to talk about everything that happened and find out where they each stood. It took almost a year to wean Julia off the extra TV and special treatment. She also hadn't had much in the way of discipline in two years and had fallen into a bad habit of whining. She was 2 when she was diagnosed and is now 4. We were essentially starting over with her. For about 6 months after treatment our lives didn't change too much. Julia had really low counts at the end of treatment which lasted for 7 months off-treatment. She was hospitalized several times with fevers, even OT, so as long as the port stayed in and her WBC was so low, we kept her away from group child settings and kept her in a stroller in public and a mask when she was out.

It was very reassuring to talk to other moms and find out that they all experienced the exact same thing. They too had days of tears, struggles with their other children, retraining with their child with cancer, fears that pop up, etc. It is all very normal. We have also found that the more we have allowed ourselves to feel and heal, the more whole we feel. We will never be the same as we were before cancer, but we are better people and have found many ways already that God is using this in our lives.

You can follow Amber's blog here.