Wednesday, July 23, 2008

Postcards From The Apex...

Where to begin.

Denial is a pretty powerful state of mind. You don't realize, as much as you tell yourself otherwise, that there are just some things you can't accept. It's time I start.

I'm sitting here, looking at an absolutely beautiful baby boy who only months ago was feared he would never get a chance to hear our voices or see our faces, yet I'm overcome with emotion - some of which is hope, but the majority is utter anguish.

There are some moments in time that I will never forget. One of which was the birth of Gordon, and the range of emotions that accompanied - from the exhilaration of going to the hospital, to the overwhelming sense of fear as a result of seeing the look of panic on our Doctor's face when she realized Gord was breach with a cord hanging down.

Another moment carved into my soul with pure and raw realism was April 1st of this year, days following my last post.

I was in a surprisingly good mood while Kim was being put through a series of ultrasounds. We were part of a prenatal screening clinic which would help determine the cause of the mysterious calcifications spotted throughout the abdomen of our little one. Having been told only days earlier to 'enjoy the weekend', I truly believed we had nothing to fear. I even found myself looking at the other mothers in the waiting room and feeling a sense of wholesome/well meant pity as their babies must have something wrong - as I 'knew' we were there merely as a precautionary follow up.

We had gone for lunch as we had several hours to wait before speaking with the panel of specialists. Beeper in hand (as they were going to page us when we were due up) we even crossed paths with our family physician as we left the restaurant. Kim exchanged hugs and tears of relief as the worst had been feared days earlier.

Within the hour, we were called in to a room with a panel of doctors sitting across from us. Files in hand and awkward introductions out of the way, one doctor, female, mid thirties, took the lead. She began by reviewing what we already knew - mentioned to us by a doctor in an earlier ultrasound that morning. Calcifications were found on the liver and throughout the abdomen, likely caused by a minuscule tare in the bowel which caused irritation and ultimately the calcium deposits to form.

She continued... "what (the doctor this morning) didn't mention to you was a likely cause of the tare..." my heart jumped and the solemn eyes of the fellow doctors looked away as my eyes darted around the room... "this is typically found in babies with, ugh-hem, Cystic Fibrosis. Do either of you have reason to suspect Cystic Fibrosis...?"

"Cystic Fibrosis"

"Cystic Fibrosis"

"Cystic Fibrosis"

The two words that have haunted me for years leading up to this very moment.

I was completely blindsided. Though I knew.*

I just knew.**

My world changed in that moment. I have not and never will be the same.


* There is no such thing as coincidence. Things not only happen for a reason, but if we are willing, we can use happenstance for what it's intended for - a warning of things to come, a guide to help us prepare for the events in our lives that will define who we are and the path with which our lives will follow.

** Years earlier, while working on a more humane way to extract DNA from mice, Kim was working on a technique which would use hair follicles in preparation for a PCR. A colleague of hers was working on a Cystic Fibrosis project and inquired if the same technique could be used on her Delta F508 primers (most common genetic mutation of CF). Kim didn't see why not and hair samples were collected from all the lab mates and used to test the technique. An odd thing resulted. Kim's sample was a little different from the others. When Kim inquired (knowing in her heart what the result meant), she was told in the most informal of ways that she was a carrier of Cystic Fibrosis.

It was also at this time we had recently become pregnant and had a miscarriage. I couldn't help but think this was somehow related (even if not directly, but indirectly as I saw this as an opportunity to further explore CF and the possibility I too was a carrier. Things happen for a reason.). Shortly thereafter, we again became pregnant, this time with Gord. Cystic Fibrosis was on my mind constantly, even though I had not been tested.

When Gord was born, I recall feeling slightly embarrassed at the short time interval between his birth and the moment I first asked our Doctor about any possibility of CF. Minutes. I had followed Gord while Kim was getting stitched, and as he was getting weighed for the first time, I brought up CF. Our doctor dismissed my concerns and stated we would tackle that bridge if and when any symptoms presented themselves. (For the next two plus years I was constantly tasting Gord's skin (for saltiness) and worrying every time he coughed. Over time the worry lessened, but always remained, only to peak again when I least expected.).

Gord was born in early December. Three weeks later I started my new/current job. My first week on the job was attending the sales conference in San Diego. The conference consisted of attending short sessions on the various subjects/texts I would represent. My first day, first session, 8am was Organic Chemistry. The session began with the presenters stating that for this textbook, the established author was donating his royalties to charity... The Cystic Fibrosis Foundation. I recall having to take several deep breaths and hard swallows. There is no such thing as coincidence.

I sat through a 15 minute video demonstration on the devastating affects of CF and the importance for continuing research in this area. Again, first day, first session. You bet your ass I sold this book like no other.

A series of other 'coincidences' resulted from this, but too tangential to delve into now...

These incidents, be them distinct nodes in my life line, are so vivid in my mind that it gives me chills to think of them. (Kim has her share of them as well.)

Not even a week prior to our ultrasound that got us in to this situation, I was channel surfing and came across a documentary. What I remember was seeing a child running/playing in a field as I moved along to the next channel. Something caught my attention and insisted I revisit it. It was, of course, a documentary on Cystic Fibrosis and the lives of those affected. I 'knew' I needed to watch it. I learned more from that documentary than I have in the years leading up to it. Good or bad, I became educated.


... "this is typically found in babies with Cystic Fibrosis. Do either of you have a reason to suspect Cystic Fibrosis...?"

I snapped back following the flood of indicative 'memories' that had rushed through my being. We tripped over our words as Kim and l turned to each other and shared a look that I will not even try to explain. We knew.

We explained Kim's situation and their humbled faces confirmed their 'diagnosis' without saying a word. They sent us both for blood work to determine if we were both in fact carriers.

The 'coincidences' continued, for the most part, in our favour.

A colleague and friend who I had recently been working more closely with was informed of our situation the following day. His wife as it may, was the nurse in charge of the Cystic Fibrosis Clinic here in London. She helped answer some of our immediate questions and concerns.

It was going to be several weeks before we received our official test results which was going to determine my carrier status. In that time, I can't begin to explain the range of emotions I experienced. The most profound of which came the second night following our day at the clinic.

I couldn't sleep. I was a chronic case of the Kubler-Ross model... with the exception of acceptance. I found myself one moment stirring with frustration and anger that this was happening to us and within the same breath losing control at the thought of both our children potentially having the disorder.

What had hit me so hard was that this was not simply a diagnosis which affected the pregnancy, but something that had much larger consequences. I couldn't help but think of Gord, the little man we had come to know and love somehow now affected by this and finding out that he may only have a decade or two left in his life. It killed me. Moreover, not only could Gord be affected, but this put the brakes on our family 'plan' of having more children. We went from having two 'healthy' children with plans on having at least one more, possibly two, to now having to deal with a life threatening disorder that could have Kim and I alone and childless in a decade.

What had comforted me only hours earlier now enraged me. I had learned the life expectancy of those with CF had increased from 3 years old 40 years ago, to 37 years old today. This initially gave me hope and relief that we would not lose our 'baby'. That night I couldn't help but realize the consequences of this. 37 years old!! What kind of life is that??!! 37 years! I contrasted that with our recent retirement plans discussion only days earlier where we had mapped out our future and realized that instead of enjoying the lives we had taken years to build together, we would be burying our child (or children).

My mood started to turn around when days later Gord's sweat test revealed he did not have CF. Moreover, the ultrasounds that Kim was going in for inititally every few days showed improvement - the fluid in the abdomen was lessening and there were no additional calcifications. The baby's condition was stable.

As the weeks progressed, getting closer to obtaining my genetic screening results, we had began to accept what we felt was an inevitable conclusion. Or so we thought.

May 1st, first day of Cystic Fibrosis Awareness Month, we got the call that confirmed our fears. Both Kim and I were carriers of Delta F508. A 1 in 625 chance.

I was at a work event talking with customers when Kim called. Her tone and the whimper in her voice told me what she had called for long before the words left her mouth. Another moment that has been etched into my psyche. In my attempts to inform my colleagues that I would have to be leaving I got cornered by a customer who began telling me her problems and needs... straight out of an acid trip, her words were chinese to me. I cut her off mid sentence, babbled a sentence or two that attempted to convey my utter lack of interest in what she was talking about (in the most professional of ways, actually no, I just didn't care) and walked out. Flustered doesn't begin to explain those 3 minutes.

Again I say, denial is pretty powerful state of mind. As much as we tried to prepare ourselves for that call, we just weren't prepared. It took some time to come to terms with the news, but with May being CF Awareness Month, we saw this a great opportunity to do SOMETHING. I, as do most men, like to fix things, and it drove me mad that I was utterly helpless. I saw the upcoming Great Strides for a Cure Walk as my way of helping. We put all our energy in to raising funds for that walk (not to mention a sizeable donation by ourselves in a vain/naive attempt to feel like we could buy our happiness back). I don't think people understand how important that Walk was to us. It gave us an opportunity to grieve and come to terms with what we were dealt by physically doing something. It also allowed us to receive support from those around us in a way that avoided straight up sentiments of condolences.

As the weeks again passed, we tried once again to accept the finality of this diagnosis. However... in the back of our minds that 1 in 4 held us back. (See, the statistical genetics behind it says that there is only a 1 in 4 chance that any child of two carriers will end up with CF. If you don't get it, just trust me.) Though we ultimately face the 1 in 4, our odds were much greater as our child showed symptoms in utero. Meconium Peritonitis (the calcifications in the abdomen) are an indication of CF, though not strictly dependent of CF. All said and done, while the odds were heavily stacked in CF's corner, there was an underdog chance that it was just a coincidence.

But, there is no such thing as coincidence.

In the weeks leading up to Kim's due date, we had met routinely with Pediatricians and NeoNatal Intensive Care medical practitioners who were more focused on the blockage then the chance of CF. Our concern changed gears from CF and we began fearing the complications of any potential bowel obstruction. The result of such a blockage would mean surgery along with a variety of other outcomes.

All the while, we kept 'preparing' ourselves to meet our baby, our baby with Cystic Fibrosis.

On July 8th, Kim delivered Oliver Armand, naturally as she had hoped. She was able to share the precious first minutes of Oliver's life with him in her arms, chest to chest. All the while the NICU was lurking in the shadows, waiting to take our boy away.

We were relieved to see Oliver pass some meconium, a positive indication that there may not be a blockage. Nonetheless, the NICU needed to run their tests as we were not out of the woods yet. We were also weeks away from an official diagnosis of Cystic Fibrosis.

I have plenty to say about what has happened between the day Oliver was born and today, but it pales in comparison to what we have been through up to then and why I wrote this in the first place. That story will come.

I'm writing this first and foremost for selfish reasons. To help me deal with what I'm going through. So far, I've accomplished that even though I have yet to write about the culmination of all these events and what they were preparing me for.

As I've stated several times so far, denial is a pretty powerful state of mind. Both Kim and I somehow managed to convince ourselves, as hard as we tried not to, that the test results were going to come back negative. Though we never admitted it to each other.

Perhaps it was a result of all the good news we had been receiving since the day he was born. He had no blockage, he had no reason for surgery, he was even gaining weight. I wouldn't admit it, but I couldn't accept it, though the signs were there and presenting themselves more and more each day.

I found myself tasting his skin more each day, thinking the previous salty lick was all in my head. His stools, becoming greasier and greasier and more foul smelling was easily explainable as 'normal'. His congestion, sneezes and wheezing, while common in plenty of non CF babies, was explained as just that.

Though I told the everyone around me that I had accepted it long ago, I hadn't. But I do now - I have no choice. It kills me. It. Kills. Me.

...Or maybe I don't "accept" it, cause at this VERY moment I want to punch a hole in the fucking wall (as I wipe the tears from my eyes). Deal with that K-Ross.



Ughhhh, so yes, today we got the call confirming Oliver has Cystic Fibrosis.

I didn't know how to deal with the news. I had convinced myself for so long that I 'knew' he had it, that I almost had myself fooled. Not knowing how to feel, I went into auto pilot (and for all I know, I'm still there)... I tried to convince Kim of all the reasons we have NOT to be sad and then spread the word to family and friends that were waiting to hear. I put the best positive spin on the 'update' emaiI I could (in what I now feel was an attempt to convince myself I'm ok with it all), all the while screaming inside. I then called the wife of my co-worker (CF Nurse) again in an attempt to 'fix this'', and made the necessary connections to get Oliver's appointment at the CF clinic as soon as possible (which will likely be next Wednesday).

Gord was great at keeping my mind as far as possible from having to deal with it all. That little man... is... just, amazing.

Gord's bedtime approached and the sinking feeling (I can't explain it any other way) became more and more distracting until I just needed to write.

And so I began...


At Monday, July 28, 2008 11:55:00 p.m., Anonymous Anonymous said...

Dear Steve and Kim,

I just read your news long past my bedtime which I now fear will be filled with your grief and frustrations. My face is wet with tears for you. I do know however that Oliver is so very lucky to have the two of you as parents. Please get all the support you can not only for Oliver but for Gord also. So many parents with a sick child spend so much time with that child at the expence of the healthy one. I'm sure much is written about this. I'm also sure you will not consciencly let this happen. Please know you are in my prayers.

Love Mary and Bill

At Saturday, August 23, 2008 9:57:00 p.m., Anonymous Andrea said...

Hi guys

I think that Oliver is very lucky to have you as his mum and dad. You were meant to be together for a reason and I think this team is a strong one:)I can't even imagine what your family will face over the next few years but I do know one are a strong, loving environment for Oliver and you can do it. He will thrive because of the energy you and Kim...and Gord will send to and positivity. xx

At Friday, November 16, 2012 11:26:00 a.m., Blogger David zhao said...

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