Who the heck is NED?

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As I begin write this, tomorrow is March 25, which marks one year from Jill’s first dose of chemo. It seems like yesterday and so long ago – all at the same time. There are so many things that I remember and millions of things I’ve forgotten. I am living proof – parents also suffer from “chemo-brain”. So my “guest” blog may be random!

During the last 13 months our family has been blessed to meet the most wonderful human beings! From the amazing physicians and nurses who have chosen to work in the field of pediatric oncology to the youngest of purely remarkable patients and their families. Trey and I been astonished at the strength and tenacity this group of humans possess. We have made lifetime friends with so many of our cancer families having shared their experiences and made wonderful suggestions – Thank each and everyone of you!

I still feel like our life is surreal. Our youngest child a year ago was a vibrant 19 year old college dorm student is now living at home unable to carry a glass of water or a plate of food. I think we had some unrealistic expectations about bone growth and what chemotherapy does to a body. Trey’s chemo in 2014 was awful but he sailed through it – getting up every day for work and recovering so quickly- I know I had thought my otherwise healthy daughter would do the same. Now Jillian was in fact blessed by great results and very few illnesses and delays due to poor blood counts it could still be months before she is fully on her prosthetic and walking without crutches, much less carrying her own plate of food or helping with everyday chores around the house.

I haven’t meet a patient or family of a patient who doesn’t believe as one door closes another (and sometimes more than one) has opened for our cancer kids. Jillian is excited about the possibility of trying out in May for a spot on the United States sitting A2, hopefully national, volleyball team and working on a career that focuses on the medical profession. She has learned that she enjoys speaking and has a few inspirational speaking “gigs” coming up in April. These are all avenues she would never had strolled down before cancer.

I have so many other random thoughts but want to keep this simple. These last two weeks have been hard. Two of Jillian’s girlfriend cancer sisters have had setbacks and we have lost our special friend Waylon. Sadness is always around us but we choose to focus on knowing God is carrying our friends and our families through this.

A few months ago I asked our NP (whom we loved and has since moved to a different state 😞) Who the heck is NED? After she quit laughing she explained to me that NED is short for No Evidence of Disease. NED has become the term our family uses in our daily prayers! It is the term that bone cancer families prays to hear from their oncology team after every scan. Jillian is set for her next scans on May 2nd in San Antonio. Please pray for NED for All of the cancer families you know.

Thanks is never enough!!

Psalm 20:7
“Some trust in chariots and some trust in horses,
but we trust in the name of the Lord our God.”

Janna K.

64 Comments

  1. Terry Arnold

    Beautiful story. Beautiful family. All of you inspire the rest of us. You have traveled this road with grace and faith.

    Thanks for sharing

  2. Ruth Smallwood

    Jillian, you and your family continue to amaze Mr. John and me. Your faith, strength, and love is a precious gift. We think of each of you often and y’all continue to be in our prayers. ❤from the Smallwoods

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