Day 133: So scared, so fortunate. A community to thank.

We were so scared.

An urgent trip to BC children’s hospital in August set the scene. A weeks worth of tests without a diagnosis was scary. We were sent back to Kelowna with a few potential diagnoses to choose from. We learned as much as we could about all of them, decided which one was scariest, and hoped that wasn’t it. When we returned for follow-up appointments Nadia was given a diagnosis of Dyskeratosis Congenita, something not mentioned before, and ends up being even scarier than the other choices.

What does it all mean? Will Nadia survive?

Well, no, not without a bone marrow transplant. And this won’t cure her, but will prolong her life, if she survives the transplant.

Pardon?

A ‘typical’ bone marrow transplant can’t be done. Her DC makes her too sensitive to the chemotherapy and total body irradiation. But we do have other, lower dose options.

OK, great!

But, they are risky.

Pardon?

Well, only a handful of transplants have been done using the candidate protocols. We have to choose one of them, and make some modifications we think will help.

So my child is a science experiment, but not in a fun way?

yes.

What are her chances?

We don’t know. And it depends if we can find a suitable stem cell match from bone marrow and cord blood registries.

How hard is that?

Hard. Especially for a child with mixed ethnicity. And even if the transplant is successful, there is a risk of acute and long term side affects. This is called Graft Versus Host Disease.

Above is the rough dialog of what we lived with from October to February. It was at times debilitating fearing what was to come.

We definitely went in fearing the worst, and scared of an unhappy outcome.

At about day -9 Nadia was hooked up all day long to IVy getting her chemo drugs, pumped with steroids, and stuck in her room (pre Isolation Room days). The whole day was essentially a meltdown/tantrum for Nadia. She behaved in ways she never had before.

On this day I broke down. I could not speak. I could not stop crying. I imagined our future with Nadia was going to be filled with more days like this, followed by Nadia sick in bed, and potentially sick the rest of her life, if she survived at all. I thought Nadia’s day-long freak-out behaviour was the best of the time we had left.

It crushed me.

I’ve never been through a lower low.

Tara had to look after us both. (Thank you Tara for your strength!!!)

This experience was not documented before in the blog. We made great efforts to keep the content uplifting if possible. We were simply not expecting what came next (in a good way!).

Nadia quickly became accustomed to the small space. To the amazement of everyone, Nadia did not become sick like everyone expected, and she flourished. She was active until she fell asleep at night. She ate like a champ, and she grew almost 2 inches.

AND, she engrafed. She had a bone marrow stem cell transplant using a technique in its infancy for a rare disease that is still not well understood.

We are so fortunate.

We are blessed.

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And we are grateful.

Thank you to all our friends, family, neighbors, doctors, cleaning staff, care givers, nurses, kind strangers. Thank you everyone for helping us get through this.

We live in a community. And not just the obvious definition of community, being people we live near. But ‘community’ in the most beautiful sense: the feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals — saving Nadia. Through our experience living Nadia’s Quest we have grown to appreciate community in a whole new way. We reached out for help and the community delivered. People from Kelowna, Vancouver, Wynyard, Elfros, Mozart, Foam Lake, BC, AB, Canada, and around the world helped save Nadia’s life. From people locally watching our house; to the people who provided day-to-day care for Nadia during transplant; to the people from our workplaces who provided support; to people letting us call them at any hour to talk; to people who read this blog, follow twitter and facebook; to people who sent care packages, messages of encouragement, cards, calls, emails, sharing our posts with your networks to help raise awareness about bone marrow registries and blood donations; to old friends reconnected; to the many blood donors who gave up their time and blood so Nadia could have 10 transfusions; to those who started donating blood because of Nadia’s quest and swabbed for bone marrow registries and convinced others to do so; to the international community of DC patients, families and physicians; and to the mother/child team from somewhere in the world who donated their cord blood to give Nadia a second chance at life – to our community, who we now consider neighbors and friends, Thank You.

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Nadia having a smoothie as we drive home from Vancouver.