Monthly Archives: June 2009

What I won’t be doing this weekend

is watching the new movie, My Sister’s Keeper.  I read the book and I can’t tell you how much I hated it.  It dramatized and exaggerated the decisions and emotions that childhood cancer families go through.  The movie reviews I have read say that people are taken into the real, ugly, world of childhood cancer.   I highly doubt that.  There is a scene in the previews (which I have been captive in a theater and seen) where the father is taking the girl to the beach or something and her mother thinks it is unsafe and yells that he is going to kill her.  This all in front of the two children waiting in the car.

Are you kidding me???  I can only assume her ANC (immunity) was low and so she should be kept out of public places.  Father decided to take her to the beach.  Mother disagrees.  So they scream at each other about killing her in front of the child?  I personally have met many cancer kid families and I cannot imagine this taking place.

I guess I was lucky that Luke and I were on the same page about most of these things.  We took Nathan places when his immunity was low.  We weighed the risks with the rewards and waulity of life and made the decisions.  We did this as two loving parents in a rational discussion.  If we had disagreed we would have deferred to the one afraid of the risk.

Anyway – the crux of this movie is about using one child as a donor to the other and I just don’t feel that anyone who has not made the decision themself should have the right to initiate a discussion and manipulate the general public’s feelings about it.  What could be worse than weighing the life of two of your children and making decisions about it.  How dare anyone assuem they know what would be right and wrong if they were in the situation.

The decisions made just about childhood cancer are hard enough.  One would think that your child gets diagnosed and then the doctors tell you what the plan is and you follow the plan and then your child is cured.  Luke and I could not get over the sheer number of life and death decisions we had to make for Nathan from a time not far into his treatment.   We felt so ill-equipped to make such decisions yet there they were, plopped at our feet, as his parents we were the only one who could make the decisions.  It is very, very stressful.  I won’t even get into the types of decisions you make when your child is dying.  If anyone, who hasn’t been there themselves, ever makes a movie about that I may just have to hunt them down.

I am glad childhood cancer will get exposure this weekend, that I can say, but I cringe for the misconceptions that will be spread about life with a cancer kid and what it is to be a parent of one.

Oh well.

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Sat. night dream

Once again – blogging a dream mainly for myself to remember.

I’m in a house that is my house but not my actual house in real life.  There are tons of houseguest and kids about as well as some friends of friends that I do not know.  Nathan walks in the hall and he is about 5 or 6 and is wearing pajamas – perhaps his blue and red hot wheels pajamas.  I smiled at him and told him I was glad to see him as I hadn’t seen him much today because he’s been off playing with all the kids.  He walked out of the room and the person I was standing with asked if he was my son and I said yes.

This is one of the only dreams I have had of Nathan where I do not acknowledge during the dream that Nathan is actually dead.  He just sliiped into my dream as if he was a part of my everyday life as usual.  It was a nice treat.

Heartbreaking

I’m checking in on Ryan, who is battling relapsed Neuroblastoma, while his wonderful mom, Missy, is battling relapsed breast cancer.

He’s currently in Vermont…his parents and uberdoctor Sholler are trying to save his life.

I’ve “known” Ryan and Missy via emails and blogs for many years.

The latest blog entry
and picture just break my heart. Hitting very, very close to home.

Please say a prayer or two for this wonderful family.

 

Should be nine

So – tomorrow should be Nathan’s ninth birthday.

Last year I decided I just needed to let it go by. This year – pretty much the same. It is still too painful to plan to “celebrate” it in any way. We were in Hilton Head last year so it was a bit easier to let it go. This weekend I kept thinking about how we might have been having his party.

I feel a bit guilty that I am not one of those who feels like they can celebrate it. I feel like it is somehow dishonoring to Nathan that I can’t bring myself to mark the day in some happy way. I just can’t.

It doesn’t help that there were not very many good birthdays to remember. 1 and 2 were good. 3 he was having chemo all day. 4 he in remission but was having the very painful antibodies in New York City. 5 was good – we found out he relapsed a few days later though. 6 we had learned the previous day that he had relapsed again therefore cutting his survival chances to nearly nothing. 7 was pure hell. 7 he was dying. We had actually given him his birthday presents the week before because we thought he might not live to his birthday. 7 he barely made it downstairs to the table to blow out his candles but was instead in bed most of the day. Those images are very hard to get out of my head.

I suppose I will let the girls know tomorrow that it is Nathan’s birthday. I recently had a discussion with Lauren about Nathan’s birthday and she was surprised he had a birthday and I said that even though he was dead it was still his birthday. She paused and asked me when was his “un-birthday”. I was surprised and asked her if she meant when was the day he died and she said yes and I told her.

Our zoo is having a members only night tomorrow and we might just go to that. I Don’t know. That in itself will be hard because the only other times we have been to the zoo at night was for a special night for ill children. The last time we did that with Nathan he was unable to walk and in lots of pain but he wanted to go anyway so we loaded him in the jogging stroller. He and I had just left the clinic where I had rushed him in earlier due to pain I could not control at home so I brought him for some IV pain meds.

So – there are minefields everywhere. Painful things. I am thinking it will be better after July 29 but between now and them I am just trying to get through.

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Past Life

I just went into the crawl space to rummage for a document and came across some things from college.

It has been 15 years last month since I graduated (ouch!)

I’ve been a stay at home mom for 9 years now.  Sometimes I forget about my accomplishments in my “past life”.

I found these two documents and it was nice relive some of the pride I used to have in my academic achievements.  In high school I was an A and B student.  Nothing great.  I didn’t expect anything better in college.

A little background..I went to college to major in pharmacy.  By the end of the first semester I was fairly certain that wasn’t what I should be doing but I didn’t know what I should major in instead.  My family were math/science people and that is what I knew . A quick aside to say that my mother taught biology and she was teaching out of the exact textbook I was using at my college for biology and even with her help I still scraped out a lowly C.  My mom suggested I take an accounting course at the local community college that summer to see what it was about and so I did and I liked it.  I then enrolled in one at college and it clicked.  I missed a total of one question on all three exams combined and two on the final. I was still in the school of pharmacy at the time and they sent this letter to me.

The higher level classes I took, the more I liked my major and the better grades I got.  My GPA went up and up but I had some not as stellar grades from my first year in college.  I knew I was on the brink of graduating with honors but did not know if it would happen.  As I lined up in the armory on graduation day I was handed an envelope with this letter in it.  It was one of my proudest moments in life thus far.

 
I went on to have more career achievements before I stopped working to be a stay at home mom.  It seems at times I can’t really remember that person.  I don’t know what the future holds but it is nice to remember I once was really good at something.  If I were graded on my stay at home motherhood abilities I think I would get a C or so.  I can do it fine, but it doesn’t just click with my like accounting did.