Thursday, December 23, 2010

Christmas at Sick Kids' 2010

Hey Everyone,

Well, another year has past and once again I find myself sitting here at Sick Kids' Hospital with Isaac, waiting for the time to tick by and for treatment to end so that we can race home to be with our family and start our Christmas Celebration.

We've spent the passed 5 years here, always coming on a weekly basis but sometimes finding ourselves here a few times a week during certain months. This means that we're always here close to Christmas - if not on Christmas Eve then definitely the day before. I'm always amazed at how calm the hospital seems during these times, the hustle and bustle of most weeks is gone. I guess only those that truly need to be at the hospital are here today, and staff have begun their holidays and are at home with their loved ones.

It's quiet again this year. But it's a good quiet and, truth be told, I love this time each year. As I type this long awaited blog update, I am sitting on the 4th floor of the hospital, a place that has been our home away from home since Isaac's diagnosis. Below me in the atrium, a musician is playing some acoustic Christmas carols for the people that find themselves here today. The soft music of his guitar adds to the already calm atmosphere here today, as his voice echoes throughout the half-empty hallways and through the rooms filled with sick kids. A therapeutic clown is dancing along to the music, and a few of the kids here today are dancing and playing with her. It's a beautiful sight to see.

I say I like this time here each year because it gives me the perfect time to put things into perspective and reflect on the past year. 2010 has been a wonderful year for our family. We've been fortunate to have Isaac is excellent health - probably the healthiest that he's been since this journey began 5 long years ago. In September, we increased his treatment dosage with hopes of seeing an improvement in his growth. So far, the increase seems to have been successful and he's growing a bit more each week - always good news when you are dealing with the disease we are dealing with. His shoulder joints seem to be showing some improvement, and his physiotherapist has been happy with the progress he is making with his fingers. And we haven't had any emergencies this year, thank God. A good year health wise, and I'm thankful to be sitting here typing that news.

The Isaac Foundation was fortunate to be able to give out another grant this year - renewing Dr. Hopwood's project for another year. Details on the project and the Lay-Person Summary can be found on the RESEARCH tab on our website. There is also promising news coming from the other project we funded over the past three years - news we hope to share in the coming months that will be beneficial to Isaac and others affected with MPS diseases worldwide. Money raised from our fundraising events and private donations to The Isaac Foundation went directly to supporting these research projects and we would like to thank everyone that donated to our cause this year. Your help does make a difference - we see it every day in Isaac and we feel it each and every moment with the hope your donations provide our family.

This year, we again participated in the RUN FOR ISAAC! event and organized our Golf Tournament. In addition, we hosted our first annual Gala for a Cure - a wonderful evening that included wine tasting, live music from Juno Award Winner Ron Sexsmith, dinner, and a silent auction. We presented our friend, Elizabeth Witmer, a Conservative MPP from Kitchener-Waterloo, with the first "Lifetime Impact Award" for her incredible contribution to the quality of life of Isaac. She was instrumental in securing treatment for Isaac. I continue to say that he wouldn't be here today if it weren't for the support of Elizabeth. She's an incredible Mom, Politician, and Friend and we were grateful to present the award to her during the Gala. We were thrilled with the success of the Gala and look forward to hosting it again next year - we hope to see many of you there again and, if you couldn't come this time, hope you can make it to our next one.

Isaac was fortunate to spend some time with two of his Hero's (and self described "Best Friends") - John Mayer and Roy Halladay. Mayer spent some time with Isaac in February at his show in Toronto and again in August when he came back around on tour. John even spent a long time on stage talking to the crowd about Isaac and the small impact he had on John while they were hanging out before the show. It was a nice touch for John to mention him to his fans and nice for him to acknowledge that Isaac means a lot to him. In June, Isaac and Gabriel headed down to Philadelphia to watch their baseball hero play against the Blue Jays. Roy's wife Brandy very kindly organized an on-field visit for the boys and they got to see Roy before the game started.

While brief, these visits with John and Roy will be the memories that I will remember most from 2010. The look on Isaac's face when he saw Halladay walking towards him from the outfield is something that I won't ever forget - the beaming smile that flashed across his face and the look of wonder that he had as his "best friend" walked toward he and his brother makes me smile even still. I'll cherish the memory of Isaac and Gabriel pitching the ball to Roy, who was perched 10 feet away in the catcher's position, waiting patiently for the boys to try to reach the ball to his glove. Isaac told Roy that he was a better pitcher then him - something Roy just smiled at. Halladay would later go on to throw a rare Perfect Game AND throw a no-hitter in his first ever playoff appearance. I think Isaac's got his work cut out for him before he's the better pitcher!

And the kind words and shared warmth between John and Isaac during his visits are always moments that we will cherish. As I've written before, Isaac has true love for John - He loves the moments they share before concerts - the laughs and hugs - and February and August were no different this year. In February, Isaac made John a cute Valentine and gave it to him before the show. I guess it came during a difficult period for John, and it seemed to have had a bit of an impact on him. With all the controversy that was swirling around John during that time, I think his time with Isaac put a few things into perspective for him. Isaac gave him the Valentine and told him that when he saw the card on the stage, he'd know that John was thinking of him. And that's all he wanted - all he's ever wanted, from John - to be thought of from time to time by someone he looks up to and calls his friend. To me, that moment gave John a moment of pause - of reflection - and he indeed thought of Isaac while he was on the stage. And he has ever since - tweeting a photo of Isaac after his show in August being just one example.

Our son and our family are incredibly indebted to John, Roy, and Brandy for their kindness and warmth. Unbeknownst to them, we feel a great sense of hope when we are around them - hope for a future for our son, hope for a breakthrough in our research, hope for a change in the course of this journey we are on. Their support, and their belief in our son and his strength, makes us feel that things are going to be OK.

Five Christmas' at Sick Kids' has seen many highs and lows for us. This hospital has brought us inexplicable pain and sorrow - but it's also brought us warm memories of time spent together, and built a family bond that only strengthens with each visit, and this one is no different. As the music fades below me and the hospital begins to empty out, I guess it's time to sign off for 2010. I'll end by thanking each and every one of you for your tremendous words of encouragement, your support, and your donations. It's hard to keep the support for an organization strong over the years, but you all make it very easy. Each year, we feel our support network grows by leaps and bounds, and we couldn't thank you more. We hope you'll stay with us over the coming years - helping to spread our story, continuing to provide words of encouragement for our son, and participating in our search for a cure for Isaac. We can't do it without you, and I'm thankful knowing we don't have to.

Warm Wishes for this Holiday Season and for a Healthy 2010, from our family to yours.

With Love,

Andrew, Ellen, Isaac, and Gabriel

1 comment:

GFD Ruisu said...

I'm a medicine student and your family history has moved me. I decided to study medicine to be able to help people to heal and make their lifes happier so when I think of all the deseases without a cure and all the people that suffer because of it my heart fall apart. I just would like to have the answer to help you and other families with your situation. I have to congratulate you for this great labor that you are doing, for being so brave and for watching the bright sight despite of the dificult times.