Happy Halloween

Here's the Bee, dressed as..... a bee!



The day didn't exactly start out great (we had a huge throwing up incident in the truck on the way to nursery school this morning), but it's turned out to be a pretty happy Halloween after all.



This was the first year we actually took Kasia trick or treating and boy.....she LOVED it! After the first couple of houses, she really started to get into it - she'd wait at the door but as soon as it would open, she'd burst inside and yell "Candy!"

Three Years!

This past Friday, October 17th was exactly three years since Kasia's surgery to remove her liver tumour. In the days that followed, we waited anxiously for any news about what the tumour was, why it was there, and if it was malignant or not. And five days later we finally received the news we hadn't wanted to hear. Cancer. It's hard to explain how we felt when we got that news. We were sort of numb actually, and it didn't really sink in until much later.

Then came the decision about whether or not Kasia should have chemotherapy. Luckily, we had an incredible doctor who really looked carefully at all of the information and took everything into account before finally giving us his opinion that we could be safe to say no to chemo. We put all of our trust in him, and to the surprise of many other oncology doctors then and now, his opinion was right on the money.


Kasia has now been cancer-free for 3 years! At our last visit to Sick Kids, her new doctor (unfortunately, her original doctor is now working at a children's hospital in Ireland) informed us that with the type of cancer Kasia had, after 3 years, they pretty much consider it gone - likely never to return. Hearing that news made my heart feel as though it would burst right out of my chest.

This past week Dino & I have talked a lot about those days and our memories.


Reliving the moment of tucking a little pink teddy bear rattle under Kasia's arm, kissing her head over and over, walking her crib to the doors of the operating room and then having to do the impossible....let her go.

And how we then waited with so many other parents in the surgical waiting room and watched the room slowly empty out, hour by hour, until we were almost the last ones left waiting.

Remembering how we slept on a tiny cot together for days and then in a waiting room with 25 strangers for the 3 nights we had no room.

Meeting more doctors in one day that I've met in my lifetime.

How we ate Burger King for breakfast, lunch, and dinner.

Dino walking into the critical care unit carrying a big helium Disney Princess balloon and tying it to Kasia's crib. We still have it.

The day that instead of just shaking his hand, Kasia's doctor gave Dino a big hug because it seemed like he needed one.

How my mom and sister-in-law surprised us by walking into Kasia's hospital room one day - after having driven for 4 and a half hours to get there - carrying boxes and bags of supplies for us...cookies, fruit, bread, peanut butter, crackers, juice, clean clothes, pillows and anything else they could cram in. And even though it was my mom, it remains hands down the nicest thing that anyone has ever done for me.

When I look back to that time 3 years ago, I never could have imagined how well things would turn out. And as we near her official 3 year check up, I hesitate to let myself believe it actually could be over. As a friend of mine who lost his daughter to cancer four years ago said, "Having had a child with cancer, even when they're in remission, I think all of us live in a constant state of fear, waiting for the other shoe to drop."

True. But today we celebrate - and even though Thanksgiving was last week (at least it was here in Canada), this week is always the one that has us reflect on how thankful we really are.

Twisty Towel

Finally found a use for that twisty hair towel thing! Who knew it could cause such big smiles!

Physician, Heal Thyself!

Yesterday I had an appointment with the family doctor - the very one from who's care I removed Kasia when she was about 18 months old due to his overt lack of faith in her. There had been comments right from the beginning like, "You can always try again", "It'll be interesting to see if she'll walk", and my personal favourite, after we commented on how we were keeping our hopes up that she would be okay, "Oh no.... not likely. Chromosomes affect every cell in the body, so.... no... she probably won't be okay."

Huh. How much can a person take? So I quietly went about finding her a new doctor. Not so easy in a city suffering a huge doctor shortage, with thousands of people without a family doctor. Through a recommendation from Kasia's pediatrician, I was able to get her another family doctor, a really nice one, but unfortunately after just 6 months, she went on maternity leave and closed her practice indefinitely.

In the meantime, the original family doctor became aware that I had pulled her from his care during a conversation with my father in law, who bluntly explained to him that I hadn't liked it very much when he insinuated that Kasia would not walk. He denied any such remark and seemed very surprised and hurt that his comments had been so terribly misunderstood.

Whatever.

Unfortunately, I have had to keep this man as my family physician. Until I can secure another doctor for myself, I am not stupid enough to throw myself out there at the mercy of walk in clinics as just another nameless face with no medical history file with which to refer.

Which brings me to yesterday. Of course I made Dino come with me to my appointment. (He actually made me promise him that I wouldn't be rude!) It was actually okay.... for a while. But just when I was starting to think I had horribly misjudged the poor man, he made a remark that blew my mind. At one point he asked how our daughter was doing and how old she was now. Although I can't remember his exact words and I won't even try to paraphrase, the gist of his response was halfway between surprise and congratulations to us that she had made it to three & a half years old.

Oddly enough, both Dino & I just let it go and only talked about it later after we had left the office. I was actually glad that he had been there to hear it, so there was no doubt in his mind about what had been said.

The thing I'm most surprised about: I'm not angry. What I do feel is disappointment. Really deep disappointment that he wrote my daughter off from day one and still believes that it's only a matter of time before her bad chromosomes which have "affected every cell in her body", finally cause her little flame to flicker out.

I guess he doesn't realize..... she's a firecracker.

Genetics

There was a mysterious message on my answering machine yesterday from our genetic counsellor. Firstly, Kasia's geneticist wants a follow up with her in December and then this: a tantalizing little tidbit.... "we also have a new technique we'd like to try with Kasia, and we'll need you to come in sometime next week to sign some papers, etc."

My mind was swirling! New technique? What could that mean? For a moment my heart raced and I allowed myself to wonder if this new technique could somehow be a "cure". I abruptly stopped myself from prancing any further into that fantastical dreamworld and instead picked up the phone to return the call.


So the new technique isn't a miraculous cure. It's a new test that can look more closely at Kasia's chromosomes - more specifically at the deleted section, and pinpoint exactly how much genetic material is missing and maybe even which genes are located within that missing section. And of course, the same goes for the duplicated section. What's hiding in there?









Great. Science is amazing, but what does this mean for us? Does it mean we'll now get even more bad news? Like maybe she's missing the gene that stops everyone from turning a lovely shade of magenta when they reach the age of five? Or maybe the gene that would've allowed her to speak fluent Dutch one day has gone astray. I guess what I'm saying is, how much do I really want to know? Will her kidneys become diseased and shut down by the time she reaches 15? Or is she more susceptible to certain cancers because of her genes? Granted, that's all good information to know, but....

So I started wondering about their motivations. What would really encourage them to do a $1,500 out of country blood test on a child who already has a diagnosis? And then I recalled our last visit with the geneticist.... and her voicing a desire to write an article about Kasia for a medical journal. Kasia's genetic profile and expression of the syndrome have been different enough that her geneticist thought an article was warranted. And though I'm sure they've started writing it, I haven't yet agreed to this article, but I'll just bet that some in-depth chromosome mapping would make it all the more juicy and worthy of publishing.


What to do?

Nursery School - Week 1

"Every artist was first an amateur." (Ralph Waldo Emerson)

Kasia loved her first day of nursery school! And although it was her first time painting, she seemed to be a natural and took her artwork very seriously!

Healing

From reading some other blogs, I happened upon the TherExtras, where Barbara is running a blog carnival on the topic of Healing. I thought it was a really good idea.... to write on a topic that would make me confront my feelings and reflect on how far I've come.


[Those of you that know me well, know that one of my great loves is poetry. I write it in times of happiness and in times of sorrow. It helps me to sort out my feelings and gives me an outlet to pour out my emotions, so it comes as no real surprise that I chose to put down my thoughts on Healing in the form of a poem.

Those of you that didn't know, now know what a huge nerd I am. The secret was bound to escape sooner or later. On the bright side, I think we should all breath a collective sigh of relief that I chose to express my feelings through poetry and not interpretive dance.]

A couple of things I have to say first: Being the parent of a child with special needs, has not made me a saint or a hero or a perfect mother. Following Kasia's diagnosis, I had a lot of anger towards everything and everyone....including her. I can't tell you that I embraced my situation from day one and went right back to living a normal, happy life. I absolutely didn't. It's taken a god awful long time to get here, but it's been worth it. Kasia has taken me places I never would have imagined, and together we've seen miracles. Because of her, I've met so many special people. How could I now consider myself anything but the luckiest mother in the world?




Restoration of a Soul

Healing is a thing that I found very hard to do.
The early days were fraught with deep despair and anger too.
Sadness had me in it's grip and would not let me go,
And Anger & Resentment were a constant nagging foe.


Such questions swirled around my brain like What? and Who? and Why?
Home Come? would often follow and What If? would be nearby.
But answers never came and so my questions lingered there,
And hung around and clung to me like smoke curls in the air.


Those days I found it difficult to live inside my skin,
And wanted nothing more than for a towel to throw in.
I looked upon my daughter as the cause of all my pain,
Envisioning the things in life she never would attain.


Like holding up her head, or reaching out to grab a ball,
Smiling, rolling, sitting up, or learning how to crawl.
These things seemed so unlikely for a child with such mistakes,
On genes with missing data lost forever in their breaks.


But slowly came acceptance for this child that I had made,
Beautiful and strong and with development delayed.
Haunting eyes and silky wisps of golden coloured hair,
A lack of muscle tone but personality to spare.


Then joy replaced the sadness when I looked upon her face,
And tiny gains were cause for celebration, not disgrace.
This child of mine, so special, such a wonder to behold,
The greatest gift, to walk with her and watch her life unfold.


Accepting her for who she is has helped to heal my heart,
And letting others in to help has also done it's part.
The best advice I ever got: to take it day by day,
Indeed, the road's been long with many twists along the way.


From shock, denial, anger, grief, and overwhelming hurt,
Each step was necessary on this path towards rebirth.
So now I've come to realize how much I've truly grown,
Become the kind of woman not afraid to stand alone,
And say "This is my child!" and with her standing at my side,
Be filled with nothing less than endless love and patent pride.



Kara