What’s In A Name
Over the last few weeks I’ve been asked to respond and provide counsel to parents reaching out to various organizations regarding their unfortunate diagnoses. Sometimes I’ve reached out to families suffering from the same turmoil and anguish that we went through with Zachary. Often the conversations are from parents who just want to vent or have a deeper discussion about the specific decisions we made as a family and what steps we took over the past 9 months that may benefit these courageous families in need. I am careful not to give direct advice as I am not a trained medical professional qualified to diagnose. I ask a lot of open-ended questions that get the families thinking about their decisions and to look for alternative paths to consider when making the best decision for their child’s well-being. I am a sounding board, a resource and confidant. I have no vested interest other than to provide strength, compassion and clarity to these situations.
Many of my upcoming posts will be focusing on HOPE, as it was the single most important therapeutic element in our daily lives. Hope to a sick child or family in need is probably the most valuable feeling one can have. In my discussions with parents, many have little-to-no hope. They have been told, “There is nothing we can do.” Some have lost confidence in their oncologist while others are uncertain about the benefits a surgical procedure could provide for their child. Life does not prepare you for these discussions and the confidence in medicine is sometimes uncertain. I recently had a conversation with a family where the child was deemed “terminal” and very little is being done to care for the child. Much of the treatment is about managing the child’s symptoms. During a conversation with the mother, I asked her several direct questions which ultimately lead her to find renewed HOPE.
The one constant in our fight to save Zachary’s life was the continued presence of HOPE from both family and our medical community. Although there were times when HOPE seemed to vanish, we forced the medical community to try new treatments, accessing medications that had never before been used for this disease. Through these efforts, we created our own HOPE. We always had a plan and backup plan which gave us continued hope – until 3 days before Zachary passed.
So what is HOPE? It has been defined as follows…
* It is a feeling of expectation and desire for a certain thing to happen.
* It is a real belief that a cure or positive outcome will emerge.
* It is opportunities for families that once were unavailable.
* It is confidence that the correct decisions were made and actions were taken.
* It is peace of mind and a continuation of belief.
The title of the post is “What’s In A Name?” because HOPE comes in all shapes and sizes. When we worked with the pharmaceutical companies to obtain use of an experimental drug, it took about 6 week to obtain the drug. For those 6 weeks and beyond, we believed we were on the path to saving Zachary’s life. During that time, Zachary was going to survive. We were on top of the world. Zachary was confident we were doing all we could. The same point could be made when he was struggling with his mobility and was frustrated about his writing. We asked Zachary to write his name on a piece of paper and dated it 11/12/2013 (as displayed in the top signature of the photo). We then performed the same exercise a few day later on 11/15/2013 (as displayed on the bottom signature of the photo). To our surprise, we saw a noticeable improvement. Whether it was 3 days, 6 weeks or 9 months, the power of HOPE is what sustained us and helped us to fight as hard as we did to the very end.
The message to Zachary was “he is improving” and this gave him comfort and courage to fight another day. The message to us was “he is improving” which gave us the HOPE and fortitude to fight another day.
As I pointed out, and what I share with families often is, there are necessary efforts one needs to take to provide comfort and HOPE that things are improving. Whether working with the big drug companies, undergoing a successful surgery or simply writing a name on a piece of paper, when HOPE seems to be lost, it is your job find it.
Yesterday is gone, live for today, let tomorrow be your inspiration and future.
Our sincerest appreciation,
Deena, David, Matthew, (Zachary), Molly.
“It Takes A Village”