Tuesday, April 27, 2010


Just a quick note to mention that today we learned Matt's tumor is STILL STABLE!  That's pretty fabulous news!  We scheduled another MRI in 3 months, and then will discuss waiting 6 months before doing the one after that.  I just LOVE it!  Dr.Walker is always amazed at Matt's progress and health.  It thrills him to see Matthew excelling in school and having a functional memory.  I also think that Matt is just a fun kid to have as a patient.  He is positive and upbeat, doesn't complain, and expresses gratitude to his doctors for all they have done.  He cracks jokes with the doctors and is very laid back about any procedures that need to be done.  Today, while he was getting an IV he went on and on about how it's no big deal if they need to poke him again because he gets lots of blood draws and he knows they are doing the best that they can, etc...  He really wins over the nurses and lab techs! :)

Just another quick note about Matt.  He was named the 'Student of the Month' for 6th grade at his middle school for April.  It is really an honor!  There are 1,400 kids at Matt's school.  They choose 3 from each grade each month during the school year.  That means only about 240 children are chosen as 'student of the month' during their time at the school.  Matt has been nominated several times through the year, and this time he won!  I guess that every teacher nominates one child per month and then once the nominations are in, the list of nominees are sent around to all of the teachers and the teachers vote to determine which children win.  Matt was invited to a special ceremony and lunch with the school administrators and counselors.  Warren and I were invited, and attended, as well.  The principal spoke about the program and awarded each of the children a special certificate along with a gift card for $25 to Hastings (a local book/music/video game store).  A local restaurant catered the lunch, which was held in the media center, and then that restaurant also gave each of the kids a gift certificate.  It was a great experience and I am so proud of my boy!  He works extremely hard at all he does and it shows!

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?? :)

Wednesday, April 14, 2010

Me, me, ME, it was all about MEEEEE.........

Warren & I just returned from a trip to Chicago.  A trip in which 6 things were missing.  Six beautiful, boisterous, wonderful, demanding things were missing from this grand adventure.  After several months of planning and debating and on again off again drama (they kept changing the date of Warren's meetings!)  Warren and I escaped, sans children for six glorious days.  Don't get me wrong, I adore my children.  I seldom leave them.  If you take out Matthew's hospital stays, I never leave them.  We have gone on little mini vacations 3 or 4 times by ourselves and it is just fantastic.  I know that sounds bad - like I am desperate to escape my life.  Nothing could be further from the truth.  When I escape for a few days, I come back recharged, am more patient with the little people in my life, and feel more blessed than I did before I left.  Also, I think about them almost constantly while I am away.  It's so funny!  On Saturday we did something we had never done, despite many visits to Chicago and living there for 2 years.  We went and had lunch on the 95th floor of the Hancock building.  The views were amazing!  I know it's a touristy thing to do, but it was fun.  All I could think about, though, was that next time we are in Chicago as a family, I am bringing the boys (and girl, of course!) to lunch there.  They would go crazy with delight! :)

I can't tell you how rejuvenating it is to spend 6 days doing nothing - or whatever you like.  There was not a thought about whether we should eat at a certain restaurant because we were uncertain if they had highchairs.  There was no haggling about which movies to see.  There was no early morning wake up call (except the ones we requested from the front desk).  There WAS an obscenely expensive dinner at Charlie Trotters (not doing that again......), two movies in a ROW (how long has it been since you saw two movies back to back?), a midnight waffle house run at an all-night diner, 4 novels, and lots of shopping (my favorite thing, not so much for Warren, but he was a great sport).  Today was our first day back and I feel so happy and lucky and well-rested.  The little things that went wrong (lost luggage, almost missed our flight), are much easier to deal with because I had a break.  YAY! :)