Starting Over Talk - Peer Coaching Support Site

I had picked up this book at the store several times and read the backcover. Each time I put it back thinking I did not want to read something about such a heavy subject.

I am now glad that I did finally read it. I thought it was very thought provoking. I do think it is an excellent book for a discussion group.

The first question I had when starting to read it was -

Is the idea of having a child that is intended to be a donor for a sick sibling morally justified.

As I started the book it stated that the parents had Anna with the intention of harvesting the umbilical cord blood cells. I think that after the remission period from that harvesting ended, then the concept of harvesting blood cells from transfusion was considered and acted upon. Which opened the door to the consideration of bone marrow harvesting.

Which by the way - Grizz - the book implies that bone marrow donation is no big deal, and not particularly painful. This is not something that I had thoght to be true. I was under the impression that this was a very serious procedure for the donor as well as the recipient. Do you know anything about this?

So, while I think that the parents started off with the best of intentions, somewhere along the way, something got blurred and suddenly Anna was a walking talking donor for Kate. So much so, that much of Anna's activities were based on Kate's needs. I was shocked that Anna was allowed to play hockey.

Another question I had was WHERE was the social worker/and family counselor for this family - the hospital surely would have had someone on their staff who would have been on a familiar basis with this family given the circumstances. If for no other reason than to CYA their own butts against malpractice.

It was my understanding from the book that Anna's cord blood was the only thing they needed from her. Then when Kate got worse after awhile, they took more and more from Anna.
It seemed to me that the parents pretty much forgot about the other kids until they needed something from them. Kate was their whole focus.
As for the social worker, I was wondering the same thing. Maybe the family had been to the hospital so many times and seemed to have it together, that a counselor was not needed. You would have thought that with all the procedures that Anna had to go thru, someone would have been appointed to look after her best interests before this.

Hey Luna................from what I have read and heard.....bone marrow donation can be painful and most certainly is not a breeze with no complications!!!

Also........depending on the time frame this happened.....having families (especially young children) as a priority with social services wasn't as much of a focus as it is today. Well.............in some areas they are STILL horrific at protecting children!!!

The time frame for the book runs from the early 90's until 2004.

I'm hoping to just go ahead and buy it when I have to shuttle my daughter to the dreaded CSAP testing this week. The library queu I'm in is just not moving very fast!!!!! But I'll read it by this weekend and then we can move on to the next book!!!

Hi Grizz - thanks for info about bone marrow - that is what I have read also.

Take you time with the book. Don't rush yourself or you will not get any enjoyment from reading it! I volunteer at the libraries here and I don't even put my name on the waiting list because they have a strange idea about ratio of patrons to book. (Example 5 copies of DaVinci Code in a city with 8 branches of the library???) In these times I should just be happy that there are 8 branches!!!

Hi Parker - yes, that was my understanding of the original intention. But, as time went on it became 'more and more and more'. At the point they started to think in terms of harvesting a kidney from a 13 year old kid - something had to give.

Another thing that perplexes the crapadoola out of me is that these two could have had two girls who were pretty magnificent creatures. These two girls were bright, articulate, caring. Their bond included their brother Jesse also. Almost like a us against them attitude.

Poor Jesse - I just feel that this boy was like the proverbial 'whipping boy'. He bore the brunt of parental neglect. Anna had to be maintained for Kate, but Jesse - oh who cares as long as he stays in the apartment over the garage and doesn't require our attention.

That whole Christmas memory of his - ugh. What is wrong with these people - Dad included.

I have one of each, one vibrantly healthy, one chronically ill. It is difficult to balance the attention between them but it can and must be done. Each child is entitled to parents who are there for them. Has it been hard, well, sometimes, yes, but fortunately, I am a person who likes to stay home, my husband is the adventurer so he goes off and does the 'fun' things with one while I stick around the house/area with the other if necessary. And, on days that require full attention for one or the other - we make the appropriate arrangements - be it nurses, babysitter or arrangements with friends. (Which just made me wonder - WHERE was this man's family? Were they both orphan children?)

Anyway, my point is that the parents in this book just seemed to have stopped being parents to Jesse. They were more like caregivers. And, Anna - well, that whole mess.

I have a question - Why do you think that the father, who spent his whole career helping/saving other people seemed to really drop the ball when it came to his own kids? Why did he not speak up so much sooner about his wife's tunnel vision view of Kate's health?

I got the impression sometimes that he thougth his wife was so much better than him, better educated, smarter, etc. It seemed sometimes that he felt that he was lucky she allowed herself to marry him and give up her big career - which I do not think would have been so big had she stuck to it.) I think that she felt she could never live up to her sister Suzanne's success and therefore opted to go the route that Suzanne had to sacrifice (family, children, etc.)

Well, this was long ramble. Sorry, I am a talker, even on paper or internet!