The Fight

update on NYC marathon

Hello everyone.

Please let me start by expressing my deepest gratitude to all of you who have supported our cause.  We have raised over $233,000 to date, but we still have a long way to go to reach our $500,000 goal. 

A lot has happened in the 8 months that I have been training for this marathon, we have put together a wonderful team of runners that are all amazing people .  Our team of 14 people is a mix old college friends i havent seen in a while, friends from my last company in seattle, new friends in denver, and friends from the mobile industry.  It is truly inspiring to me that so many folks have dedicated themselves to this cause.  Let me tell you, it aint easy, but that is why i run.

Our family has learned a great deal about this horrible disease in the last year.  A few months ago, we attended the Parent Project Muscular Dystrophy conference in Philadelphia.  This was a gathering of families affected with Duchenne Muscular Dystrophy, and the most brilliant minds around the world that are tackling this problem.  And of course, there were the boys with Duchenne. Almost all of them fit the same profile--teenaged boys, in full powered wheelchairs, all with very puffy faces from chronic steroid use over the years, most unable to lift their arms for very long if at all, some on ventilators, and many have had multiple back surgeries.  It really hits home when you see these boys, and it gives me a combined feeling of saddness for them, and resolve that Jake wont end up like that.  I know that the odds are long against us, and the same cycle of hope went through all the parents of those boys, only to be dissapointed, but now it is different, and that is why I run.

The good news from the conference is that research on treatments is really coming along, and the entire research community is optimistic that we will be able to make great strides to slow down the progression of the disease within the coming years, and keep Jake walking.  That is why I run.

 

Right now, we are in what they call the "honeymoon phase"  with Jake.  He is still very much able to walk, and even run, just not as fast as the other kids.  We know this will keep up for another couple/few years, then he will start to plateau, and then degenerate.  but we wont let that happen, That is why I run.

We just got back from Cincinatti Childrens Hospital, where they have the best MD care clinic, and who we think is the best doctor in the country, Brenda Wong.  We will bring Jake there once a year to be evaluated, its really a tough time for Jake over a couple of days, but is a trooper and he makes the most of it.  That is why i run.

But most of all, I run for the Jake's future and for the wonderful families we have met who are also affected, the Knights, the Killians, The Dunnes. the Brandoms, the Dengers and for people like Pat Furlong, who will not rest until this disease is cured.  I run because Jake's life and the life of these children depends on it.

So please, if you have not already made a donation, visit our website at www.firstgiving.com/brianlevin

or send a check to

Foundation For Their Sake
5 Cherry Hills Farm Ct
Englewood, CO 80113

The Foundation

So now it is official.  "The Foundation for their Sake" has been granted tax-exempt status from the IRS.  We are now going to officially stoke the fundraising efforts.  Initially, our efforts will be directed to the  Parent Project MD  specifically for Project Catalyst which is working on drug discovery projects that may be able to help Jake and other boys with MD.  Website will be up soon, and exciting info on our first big event as well

11/05/2007

11/05/2007
Originally uploaded by jagerguy.

chillin on the couch

To ski or not to ski.....

One of my favorite things to do on this earth is skiing.  My addiction to fresh powder has taken me from Chile up to Alaska, and many places in between.  It has always been my dream to share something i love so much with my children.  Well, its not necessarily going to be the situation i dreamed about, but i will make the mountains a part of my kids life and allow them to enjoy them as much as I do. 
So along those lines, we went to Aspen this past weekend.  I had two epic days of skiing, both Aspen Highlands and Snowmass.  So we put the kids in ski school, or at least that was the plan.  Sam got sick, and couldnt go out, Lexi had to be bribed with presents in order to get her to go, and what to do with Jake was the real dilemma.  Now Muscular Dystrophy and skiing are pretty much diametrically opposed.  Apparently, the "eccentric" muscle movements that are basic to skiing are very bad for boys with MD, because its supposed to be all about "muscle preservation" at this point.  On the other hand, we need to balance that with quality of life, and I dont want Jake to miss out on anything, so we wanted to give him a chance to experience it.  So my philosophy is to let him take a few lessons on skis, see how he likes it, and if he takes to it, get him in a Sitski or some other type of adaptive device that he can enjoy for years to come.

So Jake really took to skiing like a trooper, he really enjoyed the "magic carpet" and he tried really hard, he did a fantastic job, and when he got tired, he stopped... simple as that.   So bottom line, although they may never come with me to ski Silverton, They will always be able to enjoy the mountains and Jake can ski if he wants to.  Then again, you never know, if Jake really likes it, im sure the sky is the limit for him.  We arent going to let this disease get in the way of that...

Magic Boots

Jake has really been a trooper throughout this whole process, he can definitely tell that there is something different about the way we treat him, and all the poking and prodding that he goes through, but he has really been amazing about it all.  Case in point... the Magic Boots.  What the hell are magic boots you ask? Good Question.  Well, they are not really actual boots, and they are certainly not magic. They are orthotics that Jake wears every night, to keep his foot flexed at 90 degrees, this supposedly provides a stretch that will slow the degeneration of his muscles, stretching is a big part of what you are supposed to do.   As you can imagine, wearing these massive things all night every night for the rest of your life would be a massive pain in the ass, so upon the advice of other parents, we called them "Magic Boots" and told Jake how fun it would be to wear them.  funny the things we will do for our kids... Well, Jake wears them like a trooper, and now they are part of his routine.  If he doesnt put them on, he gets upset.  The problem is that when he wakes up really early, he clomps halfway to our room with his magic boots, angrily asking for them to come off... oh well, about as good as we could hope for i guess

Roids...

OK, so been a while since i have posted, will try to keep more current.  lots is going on.  So Jake has been on Deflazicort for about 3 weeks now, its really made a big difference in his behavior from what we can tell.  Funny thing is, the changes have been positive.  He has had a great attitude, and his energy level has shot through the roof.  I think it may have tempered off a little bit in the last week or so, but it certainly hasnt been bad.  Its almost like we have been giving him speed, he is so energetic.  We will see how long this lasts.  We were repeatedly warned about significant appetite increase, but we havent really noticed that too much, he was already a big eater, but not out of control.  We will see what happens, and keep our fingers crossed that the effects stay positive

Cincinnatti

So, first off, sorry for the extended break, i can see how it is tough to keep up with the whole blogging thing... We took Jake to Cincinnatti Childrens Hospital today, which is well known for its neurology clinic.  It begs the question though, why go to Cincinnatti when you have a perfectly good childrens hospital in Denver?  Well, although Denver Childrens is good, Cincinatti has created a model of excellence in care for MD that I would love to see in Denver.

The trip there was a bit of a pain, after spending 2 hours on the runway in Denver, waiting to de-ice the plane through yet another one of our famous snowstorms this winter, i have to say Jake was a trooper.  When we got to the hospital, we first met with a Physical Therapist specialist, who evaluated Jake, and gave us some exercises and stretches to do.  All in all, i think Jake tested well in his evaluation.  We then saw Dr.Brenda Wong, who is far and away the most knowledgable and helpful doctor we have seen yet with regards to MD.  She has seen countless patients over the years, and her perspective on all the things going on in research, and in clinical trials will be great help for us.  Bottom line is that seeing her makes the schlep to Cincinnatti worthwhile.   After some comprehensive testing and videotaping Jake's walking, running, and jumping, we now should have a good baseline to evaluate him on a go forward basis.  We plan on starting him on the steroids in a couple of weeks.

Next, we saw a nutritionist who told us about the changes we will need to make in our home lifestyle once Jake starts the steroids.  Appetite increases about 3 times, and based on the way Jake eats now, i cant imagine what he will be like then.  Because of that, we are going to need to change what he eats, and control his diet to healthy foods, to minimize his weight gain.  The best way to do this, is to implement this policy throughout the whole house, so unfortunately for Lexi, that means that a lot of the junk that they enjoy is going to have to be curtailed.  In addition, their frequent trips to McDonalds are going to have to become fewer and far between. 

Finally we went to the cardiologist, who will also continue to evaluate Jake, and although there doesnt seem to be much concern now, there will be later on. After a quick blood draw, which Jake took like a trooper, we were off to the airport, and the trip was done.

In the future, we will be going back there either once or twice a year, all in all, it is worth the pain of the travel.  Perhaps future trips will be made easier if we get one of these... something to consider :)

Off to Maragaritaville....

So we are headed to Cancun, for a little beach time and a sanity check... hopefully the little rugrats will love the ocean. 

Not so fast cowboy....

So, with the holiday approaching, and a lot of people coming to the house for thanksgiving, we decided not to start Jake on the 'roids this week... probably should wait till things slow down at the homefront...

Not the kind that Barry Bonds was taking....

So tomorrow we start Jake on steroids.  Basically, in the hundred years that we have known about MD, the only major treatment they have come up with is steriods.  Now these are not your Barry Bonds-Balco-Jose Canseco steriods, they are Corticosteroids, like Prednisone. 
Now, those of you that have taken these know that they come with some nasty side effects, which includes restlessness, major increased appetite, and potential irritability, among other things.  However, in the case of MD boys, there is very strong evidence that they slow down the muscle degeneration, and can keep boys walking for a year or two longer than without the roids... that makes it worth the side effects, we hope.

So we are starting him tomorrow on a low dose of daily steroids.. if he takes to them ok, he will likely take them for the  rest of his life, in the meantime, we will tweak the dosage, and hope for the best!!