Sunday, April 25, 2010

MRI day Tuesday!

So, this Tuesday is an MRI day for Matt.  We are still on an every 3 month MRI schedule and I suspect that we'll stay that way for a while longer.  Matt has the go-ahead to begin growth hormone from both our local Endo. and Dr.Lustig.  Since there is some concern that GH might make the tumor grow, I bet they'll want to keep monitoring him closely. To be clear, there is no PROOF that indicates brain tumors feed on GH, but, of course, there are children who have brain tumors, who go on GH and whose tumors subsequently grow.  Out of an abundance of caution, we have waited almost 18 months with a stable tumor before beginning GH.  There are doctors who refuse to prescribe GH to children with brain tumors.  We have very very carefully weighed this decision and feel like the benefits outway the risks.  I always come back to something I heard when Matt was first diagnosed.  

There is no point in saving a child's life if you don't allow them to live it.

I try to remember that mantra whenever I start panicking over Matt's health concerns, or begin to weigh what's best for Matt and am giving too much weight to his brain tumor.  Of course, it is always a factor, but I don't want it to be the only factor.  After 3 years of dealing with this, I think I've started to think of it as a part of him.  Just one more trait of my boy that makes him who he is.  It has positive and negative impacts, just like any other aspect of any of my children.  We try to take it in stride, not solely focusing on it on a day to day basis, but still adding in the things that need to be done on a regular basis - things like blood draws, doctor visits with many specialists, and quarterly MRI's.  It's part of who we are. 

The 48 hours before an MRI are aggravating and terrifying.  On the one hand, we are hopeful and optimistic, as the past 6 MRI's have been stable and have looked wonderful.  On the other hand, we are always well aware that the beast in Matt's brain may decide to grow. 

So, here yet again, I shamelessly ask for your prayers and thoughts over the next 2 days.  They've worked wonderfully so far - so why mess with a good thing?? :)


Katie said...

You guys are in my thoughts and prayers! Love the mantra, and for what it's worth, I can't think of anyone who could handle your particular situation with more grace or better skill than you are. (((Hugs)))

EmilyCC said...

Oh, that quote is so profound! I keep thinking how lucky Matt is to have such smart parents who carefully weigh all his options.

Keeping you all in our thoughts and prayers!

Huish Family said...

Love that quote, and the point you make that Matt's tumor doesn't define him. You guys are amazing. Our prayers are with your family!
Love, The Huish's

The Huffies said...

sending prayers your way! Good luck - did you get my email a week ago or so?? Take Care!