Thursday, May 14, 2009

My own little Punnett Square.

The past few days, I haven't done much. That is to say I've cleaned messes, washed clothes, and continually fed and watered children. Mostly I'm a referee. Calling the rounds, sending kids to corners. In between all that I've had many requests from the hospital staff for pictures of Lily. I have been trying to put those together.

Yesterday I was quietly working on the computer, both girls were miraculously napping at the same time . It was quiet, too quiet. I was just beginning to contemplate a shower when the phone rang, ugh the dreaded 433-5000- the hospital number. It was Lily's doc, 'Are you home?' - Oh flipping fabulous, "Yes I am home, I am seated, what do you know?" On Tuesday I had asked about the kids' P53 results, she was going to make some calls. "You have 4 kiddos that are p53 positive." Well f$#@! . "We can't buy a break this year can we?" We were hoping for the best, each child had a 50/50 chance. We knew Lily was positive- I just was hoping that 1 or 2 of the others had escaped the worry this flawed gene creates. Statistically speaking- we would even expect 3 of our kids to have this mutation according to dominant inheritance patterns. Like I said, I'm an overachiever. I don't like to do things the easy way. SO now we have to decide how to proceed. Do we join a clinical study and subject the kids to endless tests for the benefit of future generations, do we just do preventative screening, or do we keep our eyes and ears open and do nothing but watch for warning signs. "The good news is that the kids have gotten this far with no problems and are healthy and you are healthy. " Apparently she was completely disregarding my mental health because- let's face it- that currently is in the street.

I hang up. I feel like I should be really upset. I am upset. But not the hysterical- I've given my kids a death sentence upset. I guess I haven't lost all rationality. Knowledge is power, and this gives us the power to choose our path knowing that they in fact have an increased risk. I'm in my 30's. Statistically, I have another good 10 years, hopefully 20. Maybe I'll be putzing around in my 90's like my grandmother, having buried many of my loved ones. I'm not being pessimistic, I'm being realistic. Most Li Fraumeni Syndrome cancers present before 45 and most are nasty. Once you have one cancer, the probablility of more increases exponentially. That is the nature of the mutation. The kids have a good chance that in 20-30 years, they will be facing similar worries for their own kids. I see many hours of discussion in mine and Phil's future.

I send him a text to please not stay later than necessary at work. I know that ensures I will not see him before 830pm. I'll leave our discussion on fate, destiny and control of these factors later. I go about my business and get the kids in bed and am just sitting down to relax when he gets home. We recount the day's events, Phillip was introduced to a new word at school and called a name. Phil has a long talk with him. It was a great talk. I was impressed. Much better than my advice. Phillip goes back to bed. Phil looks to me "too much?" Nope, just right. It's ironic to me that my parents had tons of talks like these with us, and he was usually left to his own devices and in these situations, he always knows the right things to say and all I can come up with is "tell him he's being ignorant and walk away".

Things settle down and I relay the result of the tests. "You know" he says in the most serious tone, they haven't done all the studies, but I'm sure the radar on the jet can cause this. After all Lily is the earliest case in the family, right? Something else had to set it off. It had to be the radar. - And my heart grew 3 sizes that day, thump, thump. -That's not how it works honey. This wasn't you- it's crappy genes. I am always amazed at how well we know each other and so grateful I have him through this. For better and worse. He knows Adrenal cancer happens before 5 or later in life. It's a syndrome cancer. But he knows I'm sitting there blaming myself and will do anything for me, so to do that he wants to share "the blame". That's what true partners do. Like anyone can be blamed for genetics. But we share this responsibility, good and bad, and we will share the credit or the blame- for things that are within our control. I mean hell- at least the kids are all on equal footing right? None of that sibling rivalry nonsense over this- well you got mom's p53 mutation, she always loved you better.

1 comment:

  1. I had been wondering if you had gotten the test results... You are and will continually be in my prayers. Knowledge is power, but that's a lot of knowledge for one (albeit incredible) Mom to walk around with. Love you.


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)