The Hardest Part of Costello Syndrome.

Today is cancer screening day for Ali.  Every three months, we screen her for cancer.  To me, that is the hardest part of having a child with Costello Syndrome.  It’s cruel.  I can deal with all the other stuff.  It’s part of being her mom.  But dealing with the fact that my child has an increased risk of cancer and a significant risk of mortality is hard.

Ali has had 21 ultrasounds to check for cancer in 5 years.  She’s been scoped twice and had multiple MRIs.  You’d think it would get easier wouldn’t you?  Every time she goes for a hip x-ray, I panic.  I know that they could detect a tumor with an x-ray.  When she had her G-tube out, they did an ultrasound in the middle of the night to look at her bladder.  I almost passed out because I forgot to breath.  I was not prepared for a test that could detect cancer.  Every single time we scan her, I’m terrified.

Every three months, we have to face the very real fact that our daughter could have cancer.  It’s not just the fact that she could have cancer, these are very aggressive cancers, I face the fact, every three months that I could lose her.  I stand there for that test, knowing that one out of every five parents of a child with Costello Syndrome just like Ali, will eventually NOT get the all clear after their test.  What if it’s me?  What would I do?  I can’t stand the thought of her not being here anymore and I have to stand there and contemplate that.  We do it knowing that there is no research to prove that this testing will help our child survive.  We do it because it’s all we can do.  It gives us piece of mind for that one day that our child is cancer free.  Today, my daughter is cancer free.  Tomorrow, I won’t know anymore.  I know that there are lots of people around me who have faith that she will be okay.  That helps.  But I’m her mom and I always have the knowledge in the back of my mind that she probably won’t outlive me.  I carry that with me to every test and every appointment.  It’s hard to ignore it when you’re standing there staring at the u/s screen hoping that your child in not the one.  Today she wasn’t the one.  I’m so thankful for that.