What would you miss the most?

Updated: Nov 20, 2018

I

ts pediatric cancer awareness month and we are in #gogold mode.


I am particularly emotionally affected this month. Its a mixture of hope for the future followed by sadness for the past and concern for the present.


What I am talking about is the state of pediatric cancer .While I hear statistics thrown around the increased response to treatment and improved survival rate; I have to tell you there are to many children suffering from cancer .




When our Jordan was diagnosed in 2011 with Stage 4 n-Myc amplified Neuroblastoma we were told his odds of surviving 5-years were about 40% and when he relapsed 2 years later we were told he had little to no chance to survive. Now I believe most families are being quoted survival rates of 50-55% for those diagnosed with Stage 4 n-Myc amplified Neuroblastoma. Wonderful progress!


When you are dealing with a pediatric cancer illness the world stops for the whole family. No vacation plans. No camp plans. No college plans. You don't worry about anything but surviving. This is necessary as a survival approach but is perpetually stressful and traumatic.


In October of 2011, I was sitting in the waiting room of the surgery suite at Seattle Children's Hospital . My son Jordan was going back for re-staging scans and we were to find out how he responded to the first 5 rounds of chemotherapy and to see if his scheduled surgery was likely to be a success. I was experiencing SCANXIETY. Which means that I was anxious for the scan results as they felt like life or death every time. And this feeling never changes even if you have no evidence of disease.


In the waiting room that day I called up my dear friend who had a daughter who recovered from a rare form of brain cancer. He, his wife, and his daughter had always been a beacon of hope for me. When we started talking I was moved by our conversation. He showed me two things. First he was amazingly upbeat when talking to me even though I was miserable. He didn't feel obligated to lower his mood to talk to me. He wasn't annoying or anything; yet he was uplifted and spirited. It shifted me a bit. I felt better by talking to him rather then worse. It was special and unexpected.


Then he said one thing that shifted me for the entire battle of my son's illness.


" What would you miss if he was no longer here?"


Then everything made sense.


I would live everyday focused on his entire essence and celebrating what a treasure it is to be his dad. I would cherish his laugh, his smile, his jokes, his voice, his clever personality, his questions, and his responses. I would run with him. I would wrestle with him. I would take him places. I would talk with him. I would be enraptured in his presence.



And I did to the best of my ability.


Thanks to the help of many people supporting our family I was able to give this type of love to our dear Jordan.


Even though he was lost to this disease, I am imprinted with those seconds, minutes, hours, days, weeks , and months that I realized what I would miss when he was to leave.


This is Blankets For Cancer . We want families going through this to have less worries, less burdens, and less pulling them from the moment.


Please contribute today to our Non-profit charity so we can continue this mission.



Adam Rinde, ND Founder Blankets For Cancer.


#pediatriccancer #gogold #neuroblastoma


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