As I type this entry, I am sitting in the O/R waiting room at the Hospital for Sick Children in Toronto. The collective worry of the waiting parents make this room a very quiet and serene place.
Isaac has just gone into the Operating Room for his surgery, led by our favourite anesthesiologist, Dr. Jengus Carslie, and in one hour, all of our worries will be past us.
Ellen and I went back and forth this morning, knowing that today’s surgery is routine for most kids and that it will be quick. But we also know that Isaac isn’t most kids, and his airway has been our main concern every time he has to have an operation or an MRI. While ERT is supposed to help with airway issues, we’ve been very worried that his breathing has deteriorated so rapidly over the course of the year. We are fortunate that Dr. Carslie is looking after Isaac again today. Just knowing that Isaac is under his care makes this wait a bit easier to bear.
We know that we are blessed to be part of the family here at Sick Kids’ hospital. Andrea Hoover, the child life specialist that makes Isaac’s Tuesday visits special and memorable, dropped into the Operating Room area to see Isaac off and to help distract him before his surgery. She read books with him and made him feel at ease with the pending operation. As well,Isaac's friend, CLUTTER the Clown, has been scheduled to visit Isaac in his recovery room later.
I can’t imagine spending time in another hospital for our son. The smiling faces, caring staff, and tremendous standard of care are exactly what Isaac needs during the fight that he is faced with.
Last night, we had a wonderful evening out with Isaac’s new best friend, John Mayer. At about 3:30, we got word from Mayer’s staff that Isaac was going to get to meet his idol before the concert. We lined up with a group of contest winners for our time with John, Isaac’s anticipation growing with every passing minute.
Finally, Isaac spotted Mayer at the front of the line, posing for pictures with the other people in our group, and the smile on his face was priceless! His eyes lit up and the grin was bigger than I’ve ever seen before on our child! He kept whispering in my ear “There’s John Mayer! I don’t think he sees me yet,” and “Two more people and I get to see him!”
We thought Isaac was going to get the very quick hello and the quick photo that everyone in line got, and we would have been thrilled at that opportunity alone. But John spent a lot of time talking with Isaac, clowning around in front of the camera, posing with Isaac and shouting “Cottage Cheese and Yoghurt!” (Isaac’s pre-photo saying). Isaac wanted to know if Mayer was going to play his favourite song, “Vultures”, and John told him it was the song that was going to open up the show!
If it ended there, the night would have been a thrill. But Isaac wanted to know one more thing. As I’ve previously blogged, Isaac’s been spending most of his waking moments watching John’s new concert DVD “Where The Light Is.” While he loves the songs, the spot he keeps rolling back to is the moment with Mayer and his band are walking through the hallway from their dressing rooms on their way to the stage. The music is going in the background (“Waiting on the World to Change”) and the band look so full of energy as they take to the stage. Isaac wanted to see the hallway! For most of the day, he kept opening up the DVD booklet and showing people the picture of the hallway that Mayer and his band walk down. So Isaac asked John if he could see the hallway that led to the stage.
John told Isaac he would try to figure something out, signed his DVD for him, and we were on our way back to our seats. Ellen, Isaac, and I had a picnic on the pavement (beer, pizza, pretzels, and popcorn) while we waited for Mayer to take the stage.
(Note - They have just done a Stat Call for Cardiology to the Operating Room and I’m worried that it’s for Isaac. This is a feeling that I don’t wish on any parent. Doctor’s have gone running by the waiting room and, as I look around the room, nobody here seems as nervous as I am. While I know the chances that the call is for Isaac is remote, I still feel sick because I know that a parent here is about to go through a very painful experience.
Being here is always so very humbling. This building has given me the most difficult, painful moments of my life. But our time here has also been one of reward and promise. Going through this journey has brought us very close as a family and I have cherished every moment we have spent together. We have been able to put the true meaning of life in perspective and bask in the love that we share for each other. If I had to, I would do this all over again and not change a thing.
Anyhow, back to our update, although I think it will be more difficult to type with my now shaking hands…)
While we were waiting for the show, we got a call on our cell phone with someone asking for us to meet backstage again – John had a special surprise for Isaac! Before every show, John and his band do a special cheer, a sort of team-building, bonding cheer to that prepares them for the night on stage, and John wanted Isaac to be part of the cheer.
We got back stage, John introduced Isaac to the band, and they got together for the group cheer, this time down on their knees at Isaac-level. Everyone put their hands in and they asked Isaac what his favourite words were. After a bit of thought, Isaac responded “JOHN MAYER!” The band looked around at each other and John said, “Well, OK. John Mayer on three,” and the cheer went up!
It was a beautiful moment and I was so impressed by Mayer’s thoughtfulness and his patience with our son.
After this, it was down the hallway and onto the stage to the waiting crowd of about 20,000 screaming people! And Isaac got to walk with the band!
It’s important to note that I think they had to find a hallway to walk down because we seemed to take a round-about way to the stage. But John led the way, followed by Isaac (and Ellen) and the rest of the band. And they went all the way to the stage! And onto the stage! In fact, Isaac, Ellen, and I sat and watched the show from the speaker on the side of the stage, Isaac with a beaming smile the entire show.
Leaving the stage, Mayer gave Isaac a high-five, came over to me and said “Don’t worry…we’re going to figure this out.” Whatever comes of anything, I know that he is right because I know in my heart that we will figure this out, no matter what it takes. And all the hard work and sleepless nights, and the many events and presentations we deliver, will all be worth the tireless effort.
And the people we meet along the way will be with us to celebrate when we finally announce that we’ve found a cure for Isaac. I dream of that day often, and I know the soundtrack for our evening of celebration will be John Mayer's music.
I was so impressed by John Mayer last night. Not because he put on an incredible show (and he did!) but because of the caring and compassionate way he treated my son. John took time out of his busy schedule to provide Isaac with a positive life experience, one he won’t ever forget.
He was genuine and good, proof that he truly means what he writes about on his blog.
In his latest entry, Mayer writes “It’s a funny time to be alive right now, in that I’m not quite sure we’re celebrating like we should. I don’t mean the ‘hand me your keys, Dan!’ celebrating. I mean the inate act of 'celebration’ human appreciation. Group reveling. A general sense of ‘This is my tribe and this is our fellowship.’ Like a concert.” Mayer put his words into action last night as he celebrated our son with our family. He gave us all ã moment away from it all and I will never find adequate words to properly thank him for his kindness.
Mayer also writes about the challenges that people will inevitably face in their lives: “Chances are you won’t get hit by that proverbial bus people always talk about when they’re smoking a Lucky Strike and tipping back on their chair. Odds are also on your side (thank-God) that you won’t ever get the news from your doctor that you have only months left to live. But you know what he may very well tell you? That you need a new hip. Nobody ever says ‘live it up because someday you might need a new hip’ but it’s the truth. They don’t say ‘Be good to one another because in time we’ll all know a medical lab technician on a fist name basis’ but it happens every day.
My point is that whenever that someday comes, when I slide into the MRI scanner and the thing starts spinning up, spitting lasers and screaming into my ears, I may very well say to myself ‘I wish I had just one more of those summers.’”
Mayer is right, and it didn’t take a death in the family, or a devastating diagnosis for him to realize the importance of celebrating each and every moment.
As a family, we understand this as well. Make the most of your time, enjoy your family, and cherish every moment you have together. Remember, you never know what's around the bend.
Anyway, Isaac should be coming out of the Operating Room at any moment. I’ll update more later and try to send some photos when I can.
Thanks for hanging in there with us.
PS – Doctor just came out – Isaac is fine! No airway issues to deal with, thank God.
With Love,
The Isaac Foundation
Hey All,
Hello Everyone,
As I type this entry, Isaac is fast asleep in the chair beside me, the Enzyme he so desperately needs is slowly dripping into his body. A little boy, 13 years old, has just rode a small tricycle into our room. Incredibly, he has the same disease as Isaac. He has been visiting from Germany for the past 3 weeks and has been receiving his Enzyme Replacement Therapy here at the hospital.
ring to the forefront the dire need for a cure for this horrible disease. ERT is just a lifeboat for Isaac, a treatment to keep us afloat until we can figure this out once and for all. But occasionally I feel like our lifeboat is slowly losing air and that we’re running out of time. Finding out that Isaac’s breathing had deteriorated so rapidly (we had a normal sleep study just one year ago) was difficult to handle. It was proof positive, once again, that we’re still fighting a terribly progressive disease, and no matter how much the treatment is slowing it down, we’re reminded that we need to redouble our efforts and find a cure.
Below is the link to our Facebook group, which we use to send out our updates on Isaac and the Foundation. Please join up, and send it to your "friends" as well.
We'll make the most of our time here in the city and will try to get out for a few walks down by the water together. As we speak, we're sitting out back on the patio and taking a moment to relax. Isaac is listeing to VULTURES on his new CD player that Andrea Hoover at the hospital brought him today. It's his "bravery" gift and he's been so cute with it all afternoon! On Sunday, we will be heading to the Blue Jays game with Isaac and Gabriel, sitting in the Sick Kids' Hospital box, and watching the Jays beat up on the Yankees! I think Roy Halladay is going to drop in to say hello to everyone in the box as well.
com, 
Hey Everyone,
24 teams joined us for the event and helped us raise over $15,000 to support our hope for a cure for Isaac. In addition, Susan Henry and Janet Grace from Royal Lepage were on hand to deliver a cheque for $2,000, part of their charitable donation from profits on the houses they are buying and selling. 
Anyhow, we've decided to head out to the John Mayer concert in Toronto on Monday night to celebrate my birthday and to give Isaac a fun experience before his week in the hospital. John Mayer is Isaac's FAVOURITE singer and, lately, everything he's been doing has been John Mayer related. As I type away, he and Gabriel are dancing around and giving their own John Mayer concert, watching the new Mayer DVD as they do so. The picture to the left is Isaac having his "John Mayer Picnic" while he eats his dinner (I know...dinner in front of the TV...sorry!) But he couldn't tear himself away from the DVD in order to eat supper last night, so we all decided to camp out and watch together. Isaac and Gabriel danced and sung all the songs. It was a precious moment, and one I'm glad we all shared as a family.
