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Amanda's Gift
A guide for parents with seriously ill children. A review of the emotional and financial impact of a child's seven year fight with cancer and other illness, including a liver transplant. A detailed summary of the health care system will help enlighten many parents who are unfamiliar with the complexities of insurance companies and large hospital networks. Amanda's Gift touches on all areas of life as a caregiver, including the impact on faith and marriage.
151 pages, Paperback
First published October 23, 1998
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Displaying 1 - 4 of 4 reviews
September 23, 2013
This book was given to us about 6 months ago while our 1 year old daughter was going through her most intense chemotherapy. I could barely look at it let alone open it and read it. Now after all this time I was finally able to read it and it turns out the disease Amanda initially was treated for, Langerhans Cell Histiocytosis, is the disease our daughter has. Also, our daughter had LCH in her skin and liver, like Amanda, as well as her bone marrow. And our daughter will need a liver transplant sooner or later but for now is stable and continuing chemotherapy while she is in remission.
Anyway, as I read this book, I just kept thinking "Yes! That is how it has been and how it has felt." Though luckily, there were a lot of things Scott talked extensively about, stresses and procedures they dealt with on a continual basis, which we haven't had to because of changes in bedside manner philosophy (I guess you could call it that?), advances in medical technology and therapies and drugs, and technology in general. For instance, he wrote a number of times about the trauma and time it took to get an IV started. Our daughter had an IV initially but once she was diagnosed, they quickly replaced it, first with a PICC line, and later a port, both being long-term IVs (put simply), so the process of drawing blood or giving IV meds is much simpler and less traumatic and minimally painful.
He also wrote about how some doctors went so far as to tell him Amanda wasn't his responsibility and to let them do their job. In our experience, while the doctors have taken a stand when was really necessary, for the most part they've relied on us to be part of her care team. They know we are the ones who know her best and spend the most time with her.
In the chapter about family and friends involvement, he wrote how they eventually set up a phone chain to keep people updated without being overwhelmed by phone calls. Without texting, Facebook and email we too would have been overwhelmed. Texting was an easy way to keep our inner circle updated without much time or effort. We used email and Facebook for general updates or to keep our outer circles up to date. Because of our Facebook involvement, many people shared our experience with their friends, people we didn't know, and in a very short time, we had hundreds and hundreds of people thinking about and praying for our family. I think it made a big difference.
And when this book was written, healthcare reform was just being proposed. Now we are on the eve of the Affordable Care Act (ACA) going into effect and who knows how that will affect the treatment of serious childhood diseases. Hopefully make it easier!... Anyway, this is a wonderful book and I am so glad I read it!
Anyway, as I read this book, I just kept thinking "Yes! That is how it has been and how it has felt." Though luckily, there were a lot of things Scott talked extensively about, stresses and procedures they dealt with on a continual basis, which we haven't had to because of changes in bedside manner philosophy (I guess you could call it that?), advances in medical technology and therapies and drugs, and technology in general. For instance, he wrote a number of times about the trauma and time it took to get an IV started. Our daughter had an IV initially but once she was diagnosed, they quickly replaced it, first with a PICC line, and later a port, both being long-term IVs (put simply), so the process of drawing blood or giving IV meds is much simpler and less traumatic and minimally painful.
He also wrote about how some doctors went so far as to tell him Amanda wasn't his responsibility and to let them do their job. In our experience, while the doctors have taken a stand when was really necessary, for the most part they've relied on us to be part of her care team. They know we are the ones who know her best and spend the most time with her.
In the chapter about family and friends involvement, he wrote how they eventually set up a phone chain to keep people updated without being overwhelmed by phone calls. Without texting, Facebook and email we too would have been overwhelmed. Texting was an easy way to keep our inner circle updated without much time or effort. We used email and Facebook for general updates or to keep our outer circles up to date. Because of our Facebook involvement, many people shared our experience with their friends, people we didn't know, and in a very short time, we had hundreds and hundreds of people thinking about and praying for our family. I think it made a big difference.
And when this book was written, healthcare reform was just being proposed. Now we are on the eve of the Affordable Care Act (ACA) going into effect and who knows how that will affect the treatment of serious childhood diseases. Hopefully make it easier!... Anyway, this is a wonderful book and I am so glad I read it!
January 31, 2008
This book is such an inspiration. Plus I used to babysit for her and her family. They are all doing well now.
April 5, 2008
This is the story of my former employer's CEO and his daughter's battle with cancer.
March 4, 2009
This is a terrific book and great resource for parents of a child going through difficult medical issues. I really enjoyed it and wish it had been written 12 years ago :)
Displaying 1 - 4 of 4 reviews