Momma’s back from “To-yon-to”!

Addison October 2013 14 at 11-25-55

I’m sure no one is surprised the Princess survived just fine without Momma for one whole week. I freely admit I though of her constantly, and there were moments when I couldn’t wait to come home for an Addison hug, but I also really enjoyed the luxury of “me time”. I got a facial, went to a couple of boot camp classes, had dinner with friends, met several amazing researchers who are amongst Canada’s top specialist in transplant medicine, and pulled an all-nighter in the ER witnessing a miracle. By the end of the week, poor Aaron declared, “I’m sick of Addison and she’s sick of me.” What an awesome husband for not even blinking when I told him of my travel plans, and he did a pretty darn good job of playing Mr. Mom and Dad.

I came home from Ontario with a renewed sense of hope for the future of all transplant patients. There is so much work going on right now to try and make transplant a cure, or at the very least give recipients a longer, better life. I feel confident some of this research will change the game within the next five to ten years, maybe sooner. I got to see a pair of donor lungs that would have previously been discarded, deemed unsuitable for transplant, get successfully repaired and then transplanted in a man who had been on a ventilator, dying. It was truly like science fiction. But this is real and it’s happening right now.

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At the same time, it was a sobering dose of reality. Not all the doctors were aware of my personal connection to transplant, and at times they were brutally honest about the life expectancies of transplant patients based on current data. I left one interview feeling like I had been kicked in the stomach…”If we can get 12 to 15 years from a pediatric heart transplant, right now that’s considered pretty good.” 12 to 15 years??!! Well I refuse to accept that. It’s just not good enough and I will fight those odds with every fibre of my being. I will do everything I can to change that. Addison and all those other young (and older) transplant patients deserve so much more. It is my mission in life to make things better.

Here’s proof we can make a difference if we all work towards a common goal: after years of lobbying by parent advocates, on Monday BC Children’s Hospital finally announced the launch of a pediatric heart transplant program. As most of you know, Addison was the first infant to have a heart transplant at BCCH. At the time, the protocol was to send sick kids to Edmonton, but Addison was far too fragile to move. We hope no other family has to go through the same ordeal, but at least now they don’t have to fight to stay at home. And for us, hopefully an official program will help continue to attract the best cardiologists, surgeons, nurses and other specialists in transplant care. Perhaps we can also become more proactive with transplant research too. It all has to start somewhere right?

Addison October 2013 14 at 11-25-26 (1)

Love,

Elaine, Aaron and Addison

5 thoughts on “Momma’s back from “To-yon-to”!

  1. You are absolutely right – 12 to 15 years is nowhere near long enough post heart transplant. We will fight the good fight along side you.

    We are thrilled BCCH finally has an official heart transplant program. It will take a few years to get it fully expanded to the extent BCCH would like but this is a great first step. Going through the ordeal of a transplant is difficult enough. At least families can now do it in BC where they are close to their family & friends. There are many heart transplant families in Vancouver, like ours, who are happy to step up to give the new families some extra support too. Connecting with other BC families who have “been there” makes a huge difference.

    I’m looking forward to hearing more about what you learned in Toronto.

  2. An amazing opportunity for you to go to Toronto to learn more about transplant research (and get some quality YOU time!!)! It’s amazing news that BCCH has officially announced their heart transplant program. This can only mean progress and more research!
    Love the fall leaves pictures with dada!!! 🙂 good job aaron for surviving the week!! 🙂

  3. So far Addison’s blown out of the water any measuring stick that’s been placed on her. She’s doing so well, I have no doubt she will continue to do so. Welcome back mommy!

  4. I love to read of your determination to make changes. My daughter will be coming up to her 8th heart transplant anniversary in January and although we feel joy and celebrate each additional year of life she has been given because of her gift, I have a sense of dread that this brings us another year closer to her needing another transplant. This past weekend my daughter lost one of her heart transplant friends at the age of 7 years to cancer which was side effect of the anti-rejection drugs. Although she herself has done amazing, I know that things can change in an instant. So much research needs to be done! Keep up the great job of pressing these issues. We need a voice like yours!

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