Indeed chansen - a year is a huge milestone for all of you.  I love what you've written here.  Blazing ahead ... I will remember this in tribute to Carter, you, and your entire family.  Courage for the continuing journey. 

chansen,

excellent testimony, you old coot ;3

i've enjoyed how you've found your own space here on WC and enjoy your ministry

A year is a huge milestone indeed - and a testament to Carter, his family, the team who take care of him and the wonders of modern science. May you have many more milestones, big and small, to come.

Inanna, cute of you to slip the word in, but I reject the idea that what I do here is ministry. I am not serving here, especially not in a religious sense. I see this as part cathartic, part informative.

what are you doing up so late/early?  isn't time in socialist Toronto metered out?  or some kind of 'awakeness curfew'? :3

A very significant year of you and your family's life , chansen........

You are a fine young man (well, to me you're young!) who has many gifts -including, as the above has demonstrated - the gift of expressing both your feelings and thoughts.

I can understand you wanting to turn the clock back, but reality is what it is......

Like you, I get very upset with those that offer expensive cures without scientific validation. The cost is exploitive, to put it mildly......

But, I can also understand the parents that get defensive when these so-called cures don't succeed.

Many don't  like to be deprived of a sense of hope - when there's nothing offered by the medical profession in the here and now.

When you're drowning in despair, you grab onto any hope lifebuoy offered.........

When my husband was dying - and medicine didn't have any answers, I rediscovered my faith. (hope?)

It didn't save John's life, but faith did help me come to terms with his death.......

Perhaps that sounds selfish, but the reality is at some primal level, we are all alone in this world? (Folks who I have been close too, have told me they were aware of this, in one case for the first time, when they were dying.) 

I hope in my heart of hearts that this will be a much better year for Carter.

Chansen, this is a deeply moving tribute to your ongoing relationship with Carter. Just having children makes us vulnerable to what life has in store for them. Can anyone ever really know how any of our childrens lives will turn out? Still some of us choose to become parents and we sign on to accept all that comes with it. It can be challenging, invigorating, heartbreaking and yet still contain the most profound love any human being will ever encounter.

We can't all become great poets or astronomers but each of us contributes to a piece of the world that we personally touch in our own way. There is purpose to everything and everyones existence, no matter what changes for us, and it's normal to want back who Carter was. His life has a new normal with a different set of challenges that involve a different involvement on your part. And still your posts relate awonderful testimony to the love your family holds for this precious child and the amazing commitment that is involved and I thank you for sharing it.

Chansen - your story is one of inspiration and hope, and unconditional love.  We have all learned much because you shared Carter's story.  I am glad you will continue to chronicle it here.

Best wishes for good days in the months ahead for Carter and your family.  Never give up - miracles do happen.

Hopefully this year is a little less of a rollarcoaster for your family Chansen!

My spidey sense tingled that you had posted something ridiculous. Plus, I was up with Carter because weaning him off these neuro meds is a bitch.

There would be many who would read your story in a book you might write.I am looking foreward to it, It won't be on the religion shelf in the book store - or will it be?

It wouldn't be. It would be non-fiction.

It's on my shelf already.

What a year this has been. Even though I haven't met Carter, I have enjoyed watching his progress.

I used to work with adults who were developmentally disabled. Some had been born that way, and some had been brain injured later in life, often around the two year old mark. While I didn't imagine either was easy for parents, I always thought it must be far more difficult for those whose child had become disabled a couple of years down the road. You've gotten to know the child and have developed different dreams for him/her based on their unique personality.

I suppose the one good thing (if there is such a thing) is that you know that Carter is a smart boy with a drive and strong personality. Here's hoping that continues to serve him well. I hope it helps to know that there is cheering coming from the far reaches of the peanut gallery out here in Northern BC.

I know you didn't sign up for this kind of life with Carter but you took the cards you were dealt with and you worked with them. Not all kids in Carter's position are born with parents with such dedication and love as your family has had. It's good to see Chansen.


Hopefully the hardest year is behind you.

Thanks so much for the update Chansen.  I find it very 'special' to read your words about Carter and the ways he brings love and relationship into your life - and receives the same things back .  Unconditional love is a wondrous thing to behold - and you guys share and model that so readily.

May you continue to treasure your times with your little guy even though they are coloured by the heartbreak of his medical condition.  One thing I know for sure - Carter KNOWS he is loved and that is the best thing in this world for him to know.

As always I am following along with your reports on Carter and the way his illness has affected the lives of your family.  Best wishes to you all - you, your wife, Claire, and Carter.

Chansen, you have reminded me to have hope when others say not to...and that hope combined with hard work can provide startling results

It is easy to go with the odds and forget about the personality involved, even with kids

You are forever changed due to this shitty situation....but, others are also

thanks for that

Thank you for sharing Carter's and your trials and successes with us Chansen. You're a dedicated and caring dad and I join others here in wishing you all more progress to come.

Chansen, I also hear you mention the ticking bomb in his chest.  The ongoing stress of the situation, not just the future, but that "this could happen at any time" takes a toll.

I'm thankful you are getting out running and working on fitness

ps.  had to check the definition of ministry.  I thought you could minister to someone, ie, take care of them.  I had to recheck the definition to see that it is so closely tied to religion

Glad to see the new thread Chansen.

A couple of comments-Some everseas mdical clinics are ok. Apparently hip replacement in India is don ethe English way-quite different procedure than North America-different hardware not available here-different procedure-leaving more of the femur-and better results with less restricton on acctivities-a principal I work with just had it doen there.         But I agree with you about some clinics  and charlatans that promise the world for big $

The sub culture of young folks in wheelchairs refer to us as "temporarily abled bodied". The truth is it doesn't last for most of us.

I hope and trust  that Carter  will make terrific progress this year. Chansen  you've put your whole heart into the OP.  Its very touching, such great love and dedication.

Carter.....keep reaching for the stars..........!!!!..you can do it....!!!

Went to a very good talk at Sick Kids tonight. It didn't give us a plan forward, but it did give us the information to create a plan forward.

To recap: We have his cord blood, but with the possible bacteria contamination, the reputable hospitals won't touch it under the heading of "do no harm". Never mind that my son has no quality of life. This "do no harm" policy has to have some common sense applied to it. But I digress...

The research in Canada has centred around promoting the multiplication of neural stem cells that already exist in the brain in an effort to repair damaged areas by creating new neurons and remyelination of damaged axons (re-insulating damaged wiring).

Carter is such an uncommon case (injury at 2 years old), there are no studies that would include him. But the common diabetes drug Metformin holds some promise in that it seems to kick start the brain into creating new precursor neural stem cells, which may then migrate to the damaged areas of the brain.

We have research to do, and we need to get in touch with the University of Calgary where a study is being planned on children who have undergone radiation therapy for brain tumours. There are lots of these kids. There aren't many like Carter that had a fibroma-induced cardiac arrest, and lived. So while Carter won't be part of a study, the drug is a known "safe" drug, so we just need to confirm it is safe for Carter, work out an appropriate dosage with the help of researchers, and ideally aquire it through legitimate means. If it looks like a promising avenue but no doctor will prescribe it (because I don't want to fatten my kid up to give him type 2 diabetes for the sake of a prescription), I'm willing to bend that last criteria if necessary.

There you go. Not yet a plan, but at least a direction - something we can investigate that has demonstrated benefits in animal models. A serendipitous discovery by researchers about an unintended effect of a drug for diabetes, has given us another sliver of hope. The anxiety is still there, but I have a place to channel it again.

It seems to often be the case in medical research that a drug that was designed with a specific illness in mind - proves to have an unexpected good result in another illness.......

Everyone in your situation needs hope - so this is welcome news.

Keeping Carter in my thoughts........

Hi chansen,

I suspect that you will be able to find a doctor willing to prescribe the drug.  If that proves somewhat difficult I know a doctor who prescribed Viagra for the son of a cousin (he was around 12 at the time).  I would be willing to pass the name of this physician on to you should it be necessary.

At the time he had been diagnosed with pulmonary arterial hypertension (the same disease which claimed the lives of his two younger sisters).  

Grace and peace to you.

John

I remember that happening, RevJohn and what a wonderful thing it was , giving promise of life back where there was little hope.

chansen - you have shared your life, your heart, your thoughts, your being - and Carter's life - with us this past year.  I hope for you doing so has been somewhat therapeutic, somewhat sustaining, and somewhat beneficial to you.

You have done so, for yourself and for Carter - not for us/me.  But I have to say,in reaction to that -  that through you and what you have shared - I have learned much.  My learning is unrelevant - and I would give it up in a heart-beat if it could change Carter's circumstances.

You, your farmily, and Carter are never far from my thoughts.

I was wondering why. ED is not a common problem among 12 year olds, who have been known to carry binders in unnatural positions while standing or walking.

We'll be talking to researchers and doctors in the coming days. Thanks for the offer.

Hi Pinga,

I cannot begin to describe how devastating the whole experience was on our family.

We were at our wits end, had buried two young girls and were watching a young man start to slide down that same death spiral.  A family where once there was no shortage of laughter suddenly had no strength even to smile.

Laugher is back and flows as freely as it ever did and yet there is no mistaking the scars that those two deaths have left behind.

We understand that this one doctor is as human as any other doctor.  Nonetheless, we are deeply grateful for all of his research and advocacy.  I personally have had to deal with more than my fair share of dud doctors (most of which in Psychiatry) I am so glad that my cousins found that gem of a doctor when they needed him.

I note that his specialty is oncology/hematology so he may not be exactly what chansen is looking for (by way of specialty).  I would imagine he would know somebody.

Grace and peace to you.

John

Hi chansen,

Passing on a name is no hardship.

Hoping you won't need it just the same.

Grace and peace to you.

John

It's pretty easy to be frustrated by the "do no harm" mantra, when as parents we're scraming for a "do the most potential good with an acceptable level of risk" approach.

Good luck in your choice Chansen, it's not an easy one.

Hi chansen,

Thanks for the new thread, and the update. I haven't commented for some time on the other threads because - well - there seemed little to say that hadn't already been said.

One year is a milestone, although I heard the ominous sound of the "ticking time bomb." 

I know that you neither ask for nor desire prayer, so I'll just let you know that while I haven't been commenting, I do think often of Carter and your family.

Take care, Steven

Steven, you don't have to tiptoe around the "prayer" thing. I understand that's the go-to thing for many of you when you don't have better options. Asking you to not pray for Carter would be like asking my mother to talk without waving her hands like an ornithologist mimicking an injured bird.

I've reached out to a scientist in charge of a study for which Carter's particular brain injury does not qualify him. But maybe they would be interested in compassionate treatment? More likely, I can get some information out of him and we can start Carter on treatments by ourselves. It's a shot.

Carter is heading to the 2013 GTA WALK OF LIFE, a 5k run/walk to benefit the Cardiac Health Foundation of Canada.

http://cardiachealth.kintera.org/faf/donorReg/donorPledge.asp?ievent=105...

Not asking for donations at this time. We reached our goal, and Three To Be is where we want to do serious fundraising.

Thumbs up to Carter, hope he enjoys his walk.

Started late, but Carter did the 5k run with me, which my gps said was actually 6.2k, in about 34 minutes. We started 16 minutes late and had to pass all the walkers who started 15 minutes later than the runners, and still passed some runners. Thought we did well, but the winner was sub-20 minutes, but he did that without a jogging stroller. Pretty sure I was the only 5k competitor with a kid in a jogging stroller, actually.

Because we got here late, we had to park in an overflow lot at a Mormon church on Broadview Ave. Heading to pick it up by shuttle bus. Pretty sure they've baptized my car by now.

Ha, ha, ha .. you'll need to have your car exorcised now.

Sounds like  a plan Chansen,

I know of an Edmonton peditrician who is willing to try out new treatments. He was the first in the province to prescribe and monitor the "ketogenic diet" for seizures long before it became accepted practice. It's now mainstream for extreme seizure disorders.

Anyhow I will pass his info along if you need it  Odd are he knows the Calgary doctors.

Here's my gps map for the run. It's an interactive map and you can drag your mouse along the timeline at the bottom to see where Carter and I were at each point, and how fast I was running. This is the Zombies, Run! app I was talking about in the Fitness thread.

The first 3 minutes were spent passing the hoardes of walkers who started at 10:15am. Once past them, I turned up the hill for a long upward run. At this point the leaders had already finished. The winning time for men was 18 minutes and change. To run 6k. That's about 20 kph. Good for him. I ran 10 kph.

No doubt about you, chansen, you're always on the go......

Well done!

That's fantastic! Carter looks really good in the pictures. Did he enjoy beating his Dad?

On the last climb, short but brutal, I was yelling encouragement at him. "C'mon, Carter! Push! Harder! You can do it!" Really, it was for myself, of course. The hill had caused a few people to walk and clogged up the trail a bit. I wanted to power around them, and needed that extra push to do it.

He was laughing, the people we were passing did a double take.

So, yes, he finished just in front of me. I gave him about the same head start, though.

Also, after the race, a red-winged blackbird pecked me on the head. Seriously.

He probably got caught up in the wind current you created.

Sounds like a great race!   Yah - those red-wings are fiercely territorial!  We had one that used to swoop in on us on our walking route last year - nest nearby.  But they would always sneak up from behind - my husband tried walking backward through 'the zone'  to see if that would matter - and it did! 

I was just walking the Evergreen Brick Works paths with my daughter at that point. Got too close to a nest, I suppose. They're very territorial.

Carter looks bright and cheerful in those pictures.  Seeing a definite improvement.

Great race!

Carter looks awesome in those pictures.

Hi chansen,

That's pretty impressive.  They are hard to piss off.  

Grace and peace to you.

John