Our Great Camp Adventure for Sick Kids!

It's well know that I have some pretty awesome friends!  I would like you to meet a couple of them:

Cecilia, Carla, Roberta, Marklin (and me)!

And together we will be participating in the Canaccord Genuity Great Camp Adventure on September 28th.

Our fundraising dollars will be donated to The Possibilities Fund at Sick Kids.  This fund is available for urgent needs, including providing the best and most innovative care to patients, whether they are critically ill, injured or living with a chronic condition.  This fund allows Sick Kids to invest in research projects so that scientists can change the future of kids' health, and to train doctors who care for children across Canada and around the world.  The Possibilities Fund supports people, programs, equipment and physical infrastructure, and allows SickKids to continue to be the exceptional place it is. 

Why are we doing this?
Because we LOVE to exercise?  Hahaha!--Clearly NOT!  So why did my friends jump at the chance to walk 20km? I am sure each of them have their own reasons, these are just two of them:

Cecilia's son, Anthony was diagnosed with hodgkin's lymphoma cancer when he was 13 years old.  At the Hospital for Sick Children, he received aggressive treatment and we could not be more thrilled to report that he has been cancer free now for almost 4 years!  Anthony is a Survivor!

As for myself, well many of you know my girl, Alexa was diagnosed at 9 days old with citrullinemia(one of the Urea Cycle Disorders).  For the last 5 years, she has been followed so very closely by the metabolic doctors at HSC.  On July 18, the very best liver transplant doctors gave her another chance at life.  They transplanted a portion of her father's liver into her to cure the effects of living with citrullinemia.  The coordinators, nurses, doctors and surgeons are amazing.  Each and every one of them ensuring that we had (and will continue to have) the VERY BEST CARE during the long road ahead.  Alexa has (and still is) a participant in many trial studies that are available only with these types of funding.

Without the funding, there is no more research, no more hope!

I hate more than anything that we have to rely on Sick Kids Hospital, but I am so very grateful that they are there for us.  Without them, Alexa might not be with us today.

We walk so that one day there is no hodgkins lymphoma.  

So that one day there will be a cure to the genetic mutations that cause urea cycle disorders. 

So that one day in the not so distant future, kids can be kids--happy and healthy! We have hope!

So what exactly is this?

It's an up to 20 km challenge-by-choice adventure walk.  We will go at our own pace and participate in ultimate camp adventures along the way...

I am not going to lie, walking 20km scares me--I have never done it before.  I have trained for 10km runs but walking for 6-8 hours seems so much more daunting to me.  And then I think of Alexa and Anthony, and all that they have been through to overcome their medical conditions.  And well if they can endure all they have and come out smiling, we sure as hell can make the 20km.  Even if I have to crawl across the finish line, I will do it for them!

How can you help?
We would be ever so grateful for any donations.  Small donations add up, and if we can donate enough to get the research coordinator and scientists in the laboratory for even one more hour, then this is all worth it!  If one child is able to get one more hour of physiotherapy or occupational therapy, then this is all worth it! If one more piece of equipment is able to be purchased, well then, this is all worth it!

If you are able to do so, please click on the link below to be directed to my personal page:
http://www.support.sickkidsfoundation.com/site/TR/Events/CAMP_13?px=1255435&pg=personal&fr_id=1040

Or you can support our team of wonderful ladies (A & A's cabin) by clicking on the following link:
http://www.support.sickkidsfoundation.com/site/TR/Events/CAMP_13?team_id=1130&pg=team&fr_id=1040

Finally, we would LOVE, LOVE, LOVE, if you would come out and cheer us on!  Smiling faces and familiar voices at the 15th kilometer, may be just the push we need to make the final stretch!

If you would like more information on the event, please click here:
http://www.support.sickkidsfoundation.com/site/PageNavigator/camp_13_home.html#ad-image-0

As always, THANK YOU so much for all your continued support!

Cleared for Transplant

I was a bit nervous about today's final pre-transplant check-up--who am I kidding, I was a lot nervous judging by the nightmares I was having last night in which I take her in to be seen and she has a high fever and won't stop throwing up.....

I am super thrilled to say that our appointment went nothing like the dream.  Alexa's ammonia was 23! And physical examination showed a clear and clean system!

 We were given the clearance and told to report Wednesday morning for admittance.  It is a bit earlier than normal, but due to her complicated metabolic condition, they do not want any hiccups on Thursday. 

I met some new to us doctors and was reminded again about how great and caring our transplant team is. 

We were approached about many different clinical trials and research going on. Because I know that transplant is only possible for us right now because of all the others previous to us who said yes to trials, I said yes too. It is the only way to advance the knowledge so that those after us stand a chance too. 

Please know that i firmly believe in participating in studies for the advancement of medicine BUT I would never blindly subject Alexa to any research if there was any chance of it causing her care to be lowered or if I though for a second she might experience any amount of discomfort as a result of it. 

That being said, these are the trials that Alexa will be a part of:

1) A transplant centre biobank registry which will collect and store biological samples in an attempt to identify the genes that influence the outcomes after transplantation. It is the hope that it will help in finding ways to improve treatment, develop new medicines, diminish side effects, and combat rejection. 

2)A trial of tacrolimus dosing after transplantation. Tacrolimus is a commonly used medication after transplant to lower the activity of the immune system. This study aims to find out if they can reach the desired levels of the drug sooner by adjusting the dose based on the kind of gene one has, versus dosing based on weight of the patient. 

3) They have asked and I have given permission for them to video record Alexa's surgery to teach medical students at University of Toronto.  

I can even watch it they said---uhhhhh not sure if I am ready for that. Maybe in a couple of years. 

These are quite brief descriptions but if anyone has any questions about them or interested in more details, please feel free to email me. I am more than happy to discuss them. 

Once again my sweet little girl will help others. With each day that passes she amazes me more and more. 

As an aside, both my computers went kaput at the same time. I had many pictures of our 3 weeks of summer that I would like to share. If can get access to a computer or my iPad memory card adaptor comes in soon, I will post them.  And I discovered that I really hate blogging from my phone!