It’s been a while since the last post. Sometimes you just need a break. After attending ISPNO in Chicago and brain tumor week at Camp Sunshine I think we were all worn out. Today, we picked up Jake at Hole in the Wall Gang Camp and were thrilled to see him excited. It was a long 6 nights without contact but the Camp is truly an amazing place. A special thanks to all the camp counselers who devote their time and their hearts. Jake was dubbed the cabin comedian which I think many people would find surprising since he is so quiet. It just goes to show that this camp can bring out the best in everybody. His personal highlights were a giant swing, scuba diving in the pool and catching 3 fish which probably goes to show how well they stock the pond.

Also, we would like to thank the Connecticut College Hockey Team for making Jake an honorary member of their team. Jake is looking forward to watching some games and cheering for the Camels. Thanks to Coach Ward and all the players who have posted and introduced themselves to Jake. We are looking forward to meeting everyone.

From our family to yours,

The Gainey’s

On Tuesday, Jake had his scheduled MRI. This is without a doubt the time we fear the most. We picked Jake up at school to go to the hospital. We never tell Jake beforehand when he has an MRI….that’s the way he wants it although it does seem unfair as it is the only thing on our minds in the weeks and days leading up to it.

Before the MRI, Jake went to see his oncologist and give some blood. Then we headed off to Radiology which is at the top of our least favorite places. It was here three years ago that we were told our son had a brain tumor….it was here that our lives diverged from the path that we had so carefully planned.

Without question, the whole MRI process sucks. For me, one of the most difficult aspects of the MRI is watching Jake’s eyes as he lies in the MRI. I can’t see Jake’s eyes directly…. instead we have to rely on a couple of mirrors that our positioned so that he can see out of the machine. The mirrors are so small that I can only see his eyes. I wonder what he thinks about as I feel his eyes searching for reassurance that everything is okay and that this is normal.

At 8pm we are finally ready to leave the hospital and facing a long sleepless night awaiting the results.
An anxious night becomes an anxious morning and afternoon. Finally, around 3pm, we hear from Jake’s oncologist……STABLE…… such a beautiful word.

With Hope,
The Gainey’s

Last Sunday, Team Jake rode again in the Brain Tumor Society’s Ride for Research. It was a great day for the ride……..certainly much better weather wise than last year. A special thanks to the all the people who came out to ride or support Team Jake. It means a great deal to us to see our family and friends out there supporting Jake….and spending at least part of a day in his shoes.

Thanks to everyone who supported Team Jake. So far Team Jake has raised almost $75k and with our partner families at Team Samanta, Team TJ, Team Lucy and Team JPA/PLGA we have collectively raised over $500,000 for dedicated pediatric research.

For us, the highlight was watching Jake ride all TEN miles and listening to the roar of the crowd as he crossed the finish line. As I watched Jake pedal, I thought about where we have been and where we are going. In June it will be three years since Jake was diagnosed….three long years.

With Gratitude,
The Gainey Family

“If the brain were so simple we could understand it, we would be so simple we couldn’t.”
Lyall Watson

Tuesday’s rumination – 2 pet peeves for the price of one

The first is the human brain doesn’t get enough credit for making us human. Sure everyone thinks with their brain but the softer side of the brain’s qualities are stolen by other organs principally the heart. Think about it. The heart gets all those nice sayings like “open your heart”, “put your heart in it”, “lift up your hearts” and not to mention those cute little valentines every February.
Really now…… does anyone really believe that the heart has anything to do with those wonderful qualities we associate with it……… Love, Kindness, Valiance, Drive, Devotion? These are all qualities that while probably not particularly well understood are all the domain of the human brain. Our hopes, dreams, fears, desires, as well as both rational and irrational thinking are all our brains at work. It’s about time the human brain gets its proper credit.

That brings me to another pet peeve of mine which is the saying “it’s not brain surgery”. Jake and I heard this when we were buying him a new pair of ice skates and the individual that was fitting somebody with skates kept saying this over and over. Really only two times, but for me personally this expression is equivalent to fingernails on a chalkboard. For most people this saying has no important connotation. For parents who have watched their child go through brain surgery, it is a constant reminder of the precarious nature of our child’s condition and how difficult it is to treat our children.

If you are wondering how Jake reacted to hearing this expression….he lifted his eyes to mine and said in his quiet voice…”I’ve had brain surgery”. I know punks, I know………..

WELCOME TO HOLLAND
by Emily Pearl Kingsley.

I am often asked to describe the experience of raising a child with
a disability - to try to help people who have not shared that
unique experience to understand it, to imagine how it would feel.
It’s like this……

When you’re going to have a baby. It’s like planning a fabulous
vacation trip - to Italy. You buy a bunch of guide books and make
your wonderful plans. The Coliseum. The Michelangelo David. The
gondolas in Venice. You may learn some handy phrases in Italian.
It’s all very exciting.

After months of eager anticipation, the day finally arrives. You
pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for
Italy! I’m supposed to be in Italy. All my life I’ve dreamed of
going to Italy.”

But there’s been a change in the flight plan. They’ve landed in
Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease.
It’s just a different place.

So you must go out and buy new guide books. And you must learn a
whole new language. And you will meet a whole new group of people
you would never have met.

It’s just a different place. It’s slower-paced than Italy, less
flashy than Italy. But after you’ve been there for a while and you
catch your breath, you look around…. and you begin to notice that
Holland has windmills….and Holland has tulips. Holland even has
Rembrandts.

But everyone you know is busy coming and going from Italy… and
they’re all bragging about what a wonderful time they had there.
And for the rest of your life, you will say “Yes, that’s where I was
supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because
the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get
to Italy, you may never be free to enjoy the very special, the very
lovely things … about Holland.

………………………… so that’s where we are, stuck in Holland without a map or a guide. Now don’t get us wrong there are some nice things about being in Holland. We have been fortunate to meet some amazing and brave kids and their families who also woke up one day and found themselves in a place where they didn’t plan to be……..a place where they don’t want to be.

Please support Team Jake in the Brain Tumor Society’s Ride for Research on May 18th, 2008 in Waltham, MA by riding, virtual riding or supporting one of the Team Jake riders. While we would love for Jake to visit Italy someday, we would be more than happy just to find our way out of Holland.

From our family to yours,
The Gainey’s