This is a follow-up interview to Monday’s book review of It’s Good to Know a Miracle: Dani’s Story: One Family’s Struggle with Leukemia. The authors, Jay and Sue Shotel, offer additional insight.
Q. What made you decide to write this book?
We believe we have a story to tell that will be of interest to a great many people. A story of hope, faith, strength and strong work…and best of all a story with a happy ending
Support for others going through a similar experience
Q. As parents did you find it difficult to write this book?
Some days were harder than others … we had to relive some pretty difficult days but we had a goal that kept us focused and that was to help others who might be going through a similar experience by providing both knowledge and support to them in their struggle.
There were some cathartic days and some exhaustive days and although there is never really closure in an experience like this it probably does bring us closer.
Q. Do each of you have a single most important message that you hope the reader will get from your book?
I believe that each of us has something special that we hope the reader gains as a result of reading this book…but we also believes that it depends on the reader…
For the cancer patient and their family….vigilance and hope
For the friend or relative of the cancer patient…..support
For the casual reader…it is a story of hope and faith and love and the power of those things
For the invincible young adult…-no one is invincible
Q. Is there something in this book that you consider to be particularly powerful or moving?
Dani’s journal entries are the toughest for us to read… and although as parents you realize what a life changing event this is there are some things that weren’t shared at the time they were written down in Dani’s journal. It reinforces the notion that even with open lines of communication there are some things that one has to be ready to be share.
Q. Tell if you can…about the isolation the patient feels while going through this process
Dani talks about the alternative universe of the cancer patient and from our perspective, it affects the primary caregiver as well although certainly not to the same degree. Jay was able to go in and out of that universe but the primary caregiver really can’t. My son was the link to the other world along with strangely enough the television (American Idol) (The view) etc. and it is critical to maintain that contact with the outside world….to know it is there…and that hopefully, no matter how flawed, we can return from the alternative universe of the Cancer patient to that world.
Q. You seem to be a strong believer of patients (and families) being their own advocates. What do you mean by that?
Our parent’s generation believed that you never questioned a doctor. It was a generational thing of not questioning the doctor…Suzie’s insistence on taking notes and asking questions did not make her parents happy but we believe it was critical to the decisions that had to be made.
… by asking questions when we didn’t understand
By having Doctors drawing pictures in our notebooks and thanking them and appreciating the explanations we received made the interactions much more positive and meaningful
The most well meaning and best trained medical personnel are human and can make mistakes
Q. Do you have an opinion about the relative importance of attitude in this fight?
It may be the strongest single ally in the fight…obviously in combination with appropriate treatment
Q. What do you think friends and relatives can do when someone is diagnosed with Leukemia?
Be there …and find out what needs to be done…some things the family can and must do but there is always something else and it is always important no matter how insignificant it seems at the time
Support can take many forms.
There are still many false beliefs about Leukemia. Some people still believe it is contagious. Some people believe that patients need to be isolated. Some people believe it is a death sentence. This is no longer true. Certainly a person’s immune system is damaged, especially after receiving chemotherapy but that doesn’t mean you can’t visit someone or support them by phone, cards, letters etc. or even visit them, assuming of course that you are not sick yourself.
Q. Tell us about Dani today? How’s she doing?
Great…Had her fifth birthday post transplant…everything looks great…her and her husband have been approved for adoption…she is back teaching preschool kids with disabilities and loves it. Life is Good!
Order this book from Amazon through the link below:
It’s Good to Know a Miracle: Dani’s Story: One Family’s Struggle with Leukemia