Friday, July 18, 2008

OK Magazine Upload

Hey All,

Here are a few snapshots of the latest OK! Magazine. Isaac and John Mayer get a little photo and quick write up on the same page that the wedding gossip about John and Jennifer Aniston takes place.
Thanks again to John for allowing them to print this bit, and to Lauren for releasing her photos to the magazine!

Best,
A.

Wednesday, July 16, 2008

OK! Magazine, Isaac and John Mayer

Hello Everyone,
Isaac's photo with John Mayer, as well as a short write up about their night together at the Toronto Concert, will appear in the latest edition of OK! Magazine. If you're in a larger centre, the magazine should be on the rack today. Smaller centres will have it available by Friday.
The cover of the edition you should be looking for is on the right.
Thanks to Lauren Trazaska (www.soundcapturephotos.com), Mayer's official photographer, for allowing the magazine to use her beautiful photos. Lauren ended up being our tour guide for the meet&greet and we could tell immediately that she was a wonderful person. She was patient with Isaac and allowed him to look around backstage, play with her camera, and ask as many questions as he wanted. She's an amazing photographer and we appreciate her sending the shots to the magazine.

Isaac is doing well. We'll try to upload the article as soon as we see it.

Best,
The Isaac Foundation

Monday, July 14, 2008

Almost Home...

Hi Everyone,

One week away and we get to go home after treatment today. We will finish the week as it started…treatment (Enzyme Replacement Therapy) at Sick Kids’ Hospital in Toronto. We’re all exhausted after such a long week, but it’s a good exhaustion because we know everything has gone well with Isaac. He’s hearing much better and his breathing has dramatically improved. Still, it will be nice to be at home for the first time since last Monday.

It has been quite a surreal 7 days for our family, starting with our John Mayer concert on Monday and finishing with a trip to the Blue Jays game on Sunday (we all watched the game from Roy Halladay’s private box with some other kids from the hospital!) Mayer’s experience with Isaac and his subsequent blog about their time together started a whirlwind of interest in our son and The Isaac Foundation. We’re so fortunate that John took the time to raise awareness of Isaac and his disease and we’re indebted to him for his kindness. Blog sites have linked to our pages, wonderful and caring people from around the globe are taking the time to email with kind words of hope, and generous individuals are taking the time to donate to help us fund research projects and find a cure. We really are blessed to have so much support and we know that we will find a cure for Isaac and other affected children worldwide.

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.

Watching him puts in perspective just how lucky we are that Isaac started treatment so early. This child has suffered greatly during his 13 years and has just begun to receive his treatment a few years ago. Before ERT started, his growth had shut down, he underwent a tracheotomy, and he lost the ability to move his arms and legs. He also cannot speak. Since treatment began, he has begun to regain the ability to move his extremities and now rides his tricycle everywhere he goes.

To me, seeing this child here is like getting a glimpse into the future we would have had if we hadn’t fought to get Isaac on ERT to slow the progress of the disease. Without certainty, Isaac would have been that boy on the tricycle in a few years and that is something I can’t bear to think about. Watching this child ride around the hospital is both heartbreaking and beautiful to me at the same time because I know how much he has suffered yet I do see and feel that there is a glimmer of hope for him.

It’s moments like this that really bring 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.

But finding a cure isn’t something that we can do alone. No matter how many nights we stay up late to send out tax receipts, or how early we get up to plan events, no matter how many weekends we spend at Isaac Foundation initiatives, we’ll never be able to cure this alone. I guess this is why we’re so thankful to John Mayer for bringing Isaac and his disease into the public light, even if it’s only for one shining moment. By simply putting news of Isaac on his blog, John Mayer has sent more traffic to our website than we had all of last year alone. He has sent the public in our direction and word about MPS VI has spread far and wide. Perfect strangers are rallying around our son and our Foundation and we’ve been reminded that we’re not alone in our fight for Isaac. I’m truly comforted by this realization. It’s that comfort that will bring us through the down moments and the difficult times, and it’s that comfort that will continue to help us find the strength to fight for a cure.

I remain confident that one day I’ll be uploading our blog entry with news that a cure has been found. I know that we will be celebrating the fact that the little boy on the tricycle has received a second shot at life, and I’m confident that Isaac will be alright and never have to suffer. And when that moment comes, we’ll celebrate together with those that have helped us along the way and we’ll celebrate with those, like John Mayer, that made sure we didn’t have to do this alone.

Anyhow, we have plans to take the train home today, something that Isaac loves to do.

Thanks for stopping in and for your support. Like I said, it’s comforting.

Warmest,
The Isaac Foundation


Saturday, July 12, 2008

Join Our Facebook Group...

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.

http://www.facebook.com/group.php?gid=2275845012

Warmest,
A.

Our DVD...

Hello All,
We've had lots of questions about Isaac, MPS VI, and our Foundation, and I'll do my best to get back to everyone as soon as I can. In the meantime, I thought I'd re-upload our DVD that we made when Isaac was first diagnosed. We put it together as a way to help raise awareness of this disease and to help push our Ontario Government to help fund the expensive treatment, which costs up to $1,000,000 per year.

Not sure how much it helped with our efforts, but it does get used by families around the world that have to experience the painful news that their child might have MPS.

The DVD contains a 3 minute slide show of Isaac and some family photos, an interview with Dr. Joe Clarke, one of North America's leading MPS Specialists, and information about The Isaac Foundation and our quest for a cure. the video is about 14 minutes long so grab some popcorn! And thanks in advance for sparing some time to see it...

As soon as we completed the DVD, Isaac did have a spinal cord decompression surgery to help alleviate the pressure that was being put on his spinal cord. They took out his C-1 Vertebrae and a piece of his occipital bone and it has helped dramatically! We also (obviously) got treatment brought to Canada AND covered by our provincial health care system. But we need a cure and we still feel the video explains who we are.

Thanks again for stopping in.
Best,
A.

Thursday, July 10, 2008

Some Overdue Thank-You Notes and an Update on Isaac

Hello All,

I've finally found an internet connection, although I'm not sure how long it will last for. It's great to actually type on a blog entry on a computer! (I've been using my little mobile phone to update our blog recently...)

Isaac woke up this morning in a cheerful mood, and was raring to go! A BIG change from yesterday. He hopped onto his "big red car" and toured the floor we were staying on, played with CLUTTER the clown for a while, and then was discharged! We are currently out of the hospital but have to stay in Toronto until at least Monday due to a small chance of bleeding for Isaac. While this risk is normal, the fact that he has MPS and a difficult airway isn't and they want us close to the hospital and the best care possible.


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.


I'll try to keep this short but I wanted to send out some notes of thanks to our visitors for their wonderful comments and for helping us spread the word about our son, our Foundation, and our hope for a cure.

To those of you that have donated using our Donate Now! link at theisaacfoundation.com,
Thank You from the bottom of our hearts. We received notification about the donations while we were sitting in the hospital with Isaac and we were truly touched by your kindness and generosity.
To the person that sent a large, Anonymous, donation, we cannot thank you enough for your support. We are proud to report that over 98% of all donations go directly toward funding our research projects into finding a cure for MPS VI (the other 2% goes into stamps and ink to send out your tax receipt!)

And we're still so blessed by John Mayer's kind heart. His blog entry has spread throughout the Internet and we've received over 7,ooo hits on our main website since his online journal ran. Mostly, though, it has raised awareness of this devastating disease that we're trying so desparetly to cure. And John didn't do it because of the positive media that could have come from his generosity. He did it because he is a caring and compassionate person that truly realizes the important things in life. And if you disagree, check out his previous blog entries. This guy gets it, and he showed it on Monday Night. Thank you, John, for what you have done. While you already had a fan in Isaac, you now have a life-long friend. And your message about life's priorities has gone far and wide. I hope many learn a bit from your kindness. Life's too short not too.

Below is a message that Isaac recorded John. As you can see, he's looking great. Enjoy.
With Love,
The Isaac Foundation

Wednesday, July 09, 2008

John Mayer's Blog

Check out www.johnmayer.com/blog to see a beautifully written entry by John and some incredible photos of the band and Isaac. Special thanks to Lauren Trazaska (www.soundcapturephotos.com), Mayer's official photographer, for her wonderful shots.

I'll update the blog when I get a spare second.
Warmest,
The Isaac Foundation

Tuesday, July 08, 2008

Photos From The Past Few Days...

Hi Everyone,
It's been a crazy few days! Before I post a few photos, thank you to everyone that has taken the time to send an email, post a comment, or post John's blog on their site over the past 24 hours. For that matter, thanks for linking to our blog as well. Since noon today, we've had over 3 thousand hits on our website, mostly because of of Isaac's experience with his hero, John Mayer, in Toronto. The support that we have received has been humbling.

Isaac is resting well at Sick Kids' in Toronto. He's breathing well, probably better than I've heard from him in his entire life. And in the recovery room, he's remained true to form and has been watching his John Mayer DVD on repeat.

Below are a few photos that I captured on my cell-cam over the past few, very busy days. Sorry for the quality...seems I can't shoot proper photos with my cell phone!
Again, thanks for the support. I can't express how wonderful it feels to know that we are not alone in this fight for a cure.
Best,
The Isaac Foundatoin
Photo Info: Picture 1 - Isaac during Treatment on Monday - Watching his John Mayer DVD.
Picture 2 - Our Mayer Concert Picnic.
Picture 3 - Andrea Hoover with Isaac in the pre-OR.
Picture 4 - Our Favourite Dr. - Jengus Carslie before Anesthetic.
Picture 5 - Recovery Room with Dad.

More Info...

For our new visitors, please take a minute to learn a bit about our son, his disease, our Foundation, and our search for a cure at www.theisaacfoundation.com

As well, If you’d like to take 15 minutes to watch our story on youtube, our DVD about Isaac, his disease, and our hope for a cure can be found at http://youtube.com/watch?v=dcAQWUZV4nc. And finally, we’ve put our family gallery together, It can be found at www.theisaacfoundation.com/gallery

Best,
A.

Life Lesons from John Mayer

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

Sunday, July 06, 2008

More Ups and Downs on Our Journey

Hey Everyone,

It's been a month of ups and downs for us here at the Isaac Foundation. A few weeks ago, we hosted an incredible Celebrity Golf Tournament. We were pleased to be joined by Rob Baker and Gord Sinclair of the Tragically Hip, Ryan Malcolm of Low Level Flight, Larry Mavety of the Kingston Frontenacs, Former NHL great Bart Crashley, and the Speaker of the House, Peter Milliken.


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.

Ellen did an amazing job organizing the silent auction for this years event and it was wonderful to see the response from our guests. We send out a big Thank You to all of our sponsors, which included West Jet (tickets to anywhere in Canada!) and Via Rail (first class trip to Quebec City!)

Shortly after the event, Isaac was scheduled to have surgery. He's been having difficulty hearing lately and we decided it was best to have tubes put in his ears to try to correct the problem. At the same time, his breathing hasn't been great. While he was under, the doctors figured they would also take out his tonsils and adenoids.


A few days before the surgery, the hospital called and scheduled us in for an emergency sleep study in order to gauge the need to take out the tonsils during this surgery. With Isaac's airway being poor, it was best to have a look at the need for the surgery in the first place. Isaac and I headed off to Toronto for the overnight at a private clinic on Young Street.

It's amazing how incredibly brave Isaac is during these visits to hospitals, clinics, and appointments. While I wasn't nearly as calm (or brave), Isaac rose to the occasion, helped the clinicians hook him up to the machines, and slept beautifully, all while maintaining his cheerful and positive attitude throughout.

Before we left in the morning, I had to fill out the survey, ranking Isaac's sleep with how he normally sleeps. It seemed to me that this was one of his best! Very little snoring and, seemingly, very few episodes of his breathing stopping during the night. Apparently, I was wrong. They called us a few days later to say that he has severe obstructive apnea and had 48 episodes of his Oxygen saturation dropping per hour. Surgery was moved forward and we head into the hospital tomorrow. We expect our stay to be at least a week.

I'm not sure if news like this will get easier over time. We had been feeling that things were going very well and had started to relax a little bit. Maybe we let our guard down but, for me, getting the news that this disease was still progressing was very hard...like reality was setting in again and I wasn't ready for it. I just want everything to be fine, perfect, for our son and it's moments like this that remind us how difficult it will continue to be as we fight to save our son. I've been trying to remember what my friend told me during our last crisis - "Everything always works out in the end. And if it doesn't, then it's not the end."

But for some reason, I'm more nervous about this surgery than I have been about any of the other ones. Perhaps it's because I know that his airway is in such poor condition and that him being put to sleep will be a lot of stress on his body, or perhaps it's because I've had a bit longer to wait before the surgery actually takes place. Either way, I'm nervous and just want Tuesday to come and go without incident. After that, all hopes are that his hearing will improve with the tubes in, and that his breathing will normalize with his tonsils and adenoids out.


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.

I've been trying to arrange a Meet and Greet for Isaac, unfortunately without much success. But seeing Mayer on stage will be exciting for him and will hopefully start our week off on a good note. Below is a video that Isaac recorded for John Mayer while we were getting ready for the sleep study. You never know who's watching!
Not sure when we'll get a chance to update again, but we'll try sooner rather than later.

Best,
The Isaac Foundation