Pirates

Ah, the resiliency of youth.

Week three of the chemo now done, Bethany's holding up well and the docs want to have another MRI to see how it's working.  Her energy level and spirits are okay overall, though she does admit that it's getting more depressing that she has to miss blocks of time in the last weeks of Grade 8 and feels tired more and more of the time.  We just pray that it's working.

On the other hand, she's such a happy child in general that it doesn't take much to get her excited about the next fun thing, whether that's the new "Pirates of the Carribean" movie or her upcoming Confirmation (and reception/party afterwards). 

It's gotten lousy reviews so far, but that doesn't seem to matter to kids who haven't developed much critical thinking yet, or "Pirates" fans like our family.

Speaking of people who haven't developed much critical thinking, I noticed that the tide turned pretty quickly in the "men who redeem the gender" category - thanks Arnie and Dom.

If you need captions to know who these guys are, you've been disconnected from all media for at least the last week - which would probably not be a bad thing.  I really regret our trial subscription to the Toronto Star for all it's horrible reporting and front page shock-stories -- I keep out the comics for the kids but chuck the rest in recycling before they get the chance to see it. 

Which also makes me wonder how much media bias there is in the rise and fall of men lately in the news cycle.  Just sayin'.

So now time for a little honest reporting on myself. 

1. Start a new blog : Done
2. Take karate lessons : Uh, not yet
3. Maintain the new blog :  Steady as she goes...
4. Start investigating how to get my PhD by age 50 : Started, need to do more
5. Get a Bb Playbook as soon as they come out (maybe even wait in line like the diehards):  Just couldn't do it.  Maybe it's what keeps me from being an "early adopter" in general, but too many iffy reports before the release date.  Still on my wish list, though - no Apples for me. 
6. Copy those videotapes of our 2005 trip to Ireland :  Kind of forgot about this one.  Step one, set up 2nd computer for all media conversion.
7. Give my kids more hugs :  Already ahead of last year (and most years)
8. Say "I love you" more :  Ditto

Winners

Winner

Winner

Winner

Uh, not so much.

Just when Charlie Sheen had given the male gender a black eye, along came three men this past weekend who really did "live the dream".  And a fourth...well, not so much.

It really was quite an eventful weekend for the news though, wasn't it?  Regardless of your affiliations and loyalties, you can't deny it was a "busy news cycle" as they say.  No need for the news broadcasts to find stories of kitties rescued by firefighters -- not that there's anything wrong with that.

In other news, Bethany's in the middle of her week-after-chemo, and this time the fatigue and lethargy are catching up with her.  Supposedly according to her oncologist last week, the chemo drug really takes effect 5-7 days after she gets it since it affects the production of new white blood cells which aren't fully in the bloodstream for 5-7 days later. 

This means that she's not only tired but very immune-suppressed right about now - and with her mom and little brother sharing the same persistent nasty cold.  Just don't share it with us, honey!


So is there anybody but me that thought that House and his crew looked a little too "made up" this past Monday?  Where was the rumpled hair and slept-in-my-clothes look?  They all looked overdone to me.

Docs III

This morning lying in bed, feeling my aging back and listening to my tinnitus, I remembered a funny bit from Louis CK on turning 40 (WARNING, PG-13 content! And this is mild CK material, so if you go looking for other clips be warned!):

Reminds me a little of getting checked out for heart palpitations a couple years ago, finding out that I have a couple of "prolapses" (mitral and tricuspid) which basically means a couple of valves can't get their act together.  I was relieved I had no heart disease, but the doc basically said, "yeah, you have these things wrong with your heart but you're fine".

Bethany update:  really nothing new to report, which is always nice.  She met with an endocrinologist earlier in the week who basically said her endocrine system seems fine - unaffected by the LCH so far.  The second cycle of chemo-for-one-week-and-two-weeks-off is coming up next week, but she managed the first cycle well so we're hopeful.

PhD update:  seems like my options in the Toronto area include U of T, Ryerson, and York.  I have til the fall to decide (since I won't be starting this year) so the next step is to ask around about the colleges and visit/meet with program reps. 

 Not being a native Torontonian I have no bias, except that I really don't want a program that only has the really dry psychology research (mice, brain studies, that kind of thing).  Probably a program that allows for the study of kids and mental health treatment, which is my forte.

A promotional video from Children's Mental Health Ontario (in honour of children's mental health week, May 2-6):

  

Awesome

I've been saving this one for a while, but it feels right to add a little AWESOME to this post:

It's the end of week two for my daughter, and other than a little tireness and a mouth sore or two, she's doing fine.  We're re-learning how to take care of her PICC line (daily flushes and weekly dressing changes) and getting support from all over. 

Actually, the amount of support we're getting is AWESOME but getting a little stressful too.  A home-visiting nurse to teach us, another nurse to network with Bethany's school and explain her disease to them, an Endocrinologist to see on Tuesday, her pediatrician wants to see her and get updated, all in addition to her ENT and oncologist. 

Yes, there can be too many nurses



And we were told that we'll be contacted by a social worker from the hospital on top of it, to offer a different kind of support.  With all the other "support" we're getting it'll be hard to say yes, though I'm sure we'd benefit from whatever therapeutic services she'd recommend.  I know I would.

So I think we've struck a deal around this "wish foundation" thing, since Beth seems to really want a dog.  She wishes for a nice trip (probably for Christmas break) and we'll consider buying a dog this summer.  That way we all get to enjoy the wish, and the dog is something we explore and negotiate. 

 Paris maybe?

 Hawaii?

 The Holy Land?

 Sound like we're being selfish parents?  You don't know what we went through with the first two dogs - the first a beagle-spaniel puppy who grew into a royal PITA, and the second a neurotic older beagle who everyone just got tired of.  We should probably have our heads examined just for considering dog #3, but for the context.

Oh and I just discovered this new AWESOME beer at the LCBO, out of Quebec - "Blanche de Chambly" - highly recommend it.  I'd try to describe it, but then I'd sound like the label, which is just not cool.  Just try it - I know I'm stocking up for the summer.

After jixing the Pats before the NFL playoffs, dare I say "go Habs"?
I can't resist, after beating the Bruins the first two games - and in Boston nonetheless.
I'll let game two speak for itself:

Docs II

Well, it's happened as we feared.

Our eldest daughter Bethany has had a relapse of her early childhood disease, Langerhans Cell Histiocytosis, which had created a tumour behind her right ear when she was 20 months old.  Surgeries, chemo, and radiation over the next two years, and she was clear, thanks to the great docs and medical care at UMass Worcester in Massachusetts. 

A shout out here to Dr. Newberger, her first oncologist there, and the awesome team at UMass who kept her from being in the 30% of kids under 2 who die from this disease.

http://www.umassmemorial.org/MedicalCenterIP.cfm?id=2201

And for the last ten years, not a sign of it - no ear infections, no nothing - go figure.  Plus we were told the risk of recurrence drops at adolescence, so we were actually starting to relax around it.

Then an ear infection started on that side last summer that wouldn't go away - dun, dun, dun.

Fortunately we had already connected with Sick Kids hospital here in TO after the move, so she had an ENT doc lined up as well as an oncologist, Dr. Sheila Weitzman, the Hematology/Oncology Clinical Director:

She had a little procedure in December to remove a polyp in her ear canal, then a longer operation in January to clear out some decayed bone and fix up the bone structure (see "Momentum" for more details).  And we thought we were done - but then we had an MRI on the 28th and her oncologist saw the signs of LCH returning - part of her pituitary was destroyed and there was "thickening of the pituitary stalk".

So last week she had a PICC line put in and started chemo injections over 5 days. 

The drug is called 2CDA and now she'll get 2 weeks off from it, then another 5 days and 2 weeks off, etc. for 6 cycles which should take us into July.  Then a little break and switch to oral chemo for months afterwards - the doc is predicting a full year of chemo at least. 

On the upside, the drug isn't supposed to create hair loss or severe nausea, and we seem to have caught it early enough that she hasn't developed Diabetes Insipidus, commonly linked with the disease.  Here's a minute on DI by a nurse in Texas (in case you're wondering):

On the downside, the chemo meds will build up in her system over time and suppress her immune system (which is how it stops the tumours) so she'll be more and more prone to infection, have potential clotting problems, and the like.  So we'll all have to be careful around the Bouchard household to keep things clean and prevent unnecessary germs and colds.

On the upside again, she's eligible for one of those "wish foundation" wishes so she's thinking about taking advtantage and wishing for something to make some part of this enjoyable.  We're trying to discourage her from pet dog attempt #3, but that's a different story.

There are already prayer chains in motion and many wishes coming in, which are great because we know they make a difference.  If you're interested in learning a little more about the disease, which isn't well known but devastating to many families of young children, see:

http://www.histio.org/

or the Canadian equivalent:

http://www.histiocytosis.ca/

And here's a link to videos from a 2007 conference on the disease, including a presentation by Dr. Sheila Weitzman, Bethany's oncologist:

http://www.histio.org/site/c.kiKTL4PQLvF/b.2904673/k.685B/Histio_101_Videos.htm

Docs

Where have I been?

Knocked on my butt the last two weeks with a flu and strep throat, that's where.

Not for 4-5 years have I been laid up like that by viruses and bacteria. 

And then the first doc (the ER doc, since I rushed to an ER when I woke up with my throat almost swollen shut) prescribed this "Biaxin", which was just awful - side effects like you wouldn't believe, including:

- increased heart rate

- insomnia

- nausea and vomiting

 

 

 

I tried to tell the guy that Erythromycin has worked for me ever since I had an allergic reaction to Penecillin when I had mono in college, but noooooo, he had to try the new popular antibiotic.

After two days I got some Erythromycin from my own doc.  Within a couple of days I felt like a million bucks.

Ah well, docs are people too I guess.

I've developed a healthy skepticism realism about most professionals in my mid-life.

So why pursue the PhD myself?

Well, first off, I think I've been extremely patient in "going the whole 9 yards" with the graduate work, considering I:

1) could easily have barrelled through it after the Master's, and

2) have put growing a family ahead of my ambitions in that regard.

On the other hand, I didn't want to be one of those thirtysomething PhD's who have little to no actual "real-life" work experience, or worse yet narrow my options to testing, researching, and/or teaching psychology since I wouldn't have been good for much else.

Now that I have some years of experience (close to being able to say "decades"), though, and want to be taken more seriously for my expertise, it seems to fit.  It could also parlay into teaching or writing in the future, which would not be bad pre-retirement gigs. 

Followers

I remember hearing the term this morning, and although I'd heard it before it actually registered this time -- bloggers or tweeters want "followers".  Like friends on Facebook or something, it creates this feeling of importance, doesn't it?  What an age we live in, that we can all be international publishers and broadcasters from our home computers. 

Used to be that only religions and cult leaders had followers.  Not sure I like the idea of anyone following me.

Anyhoo, this past weekend I actually interrupted all of the "screen time", got myself and the kids bundled up and went into the backyard to build a snowman.  Well actually, the 4-year old didn't want to wait for the finished product, so we ended up with 3 large snowballs toppled on the ground that we turned into a snowfort.  Another snowfort later, and we were off to the snowball fight races. 

An hour of getting soaking wet and rosy cheeks, and it felt like childhood.

I think what got me off my butt was a psa that my wife found online about childhood obesity being linked with screen time - can't find it now, but the statistic was sobering.  Some ad with a child's head on an obese adult's body in a doctor's office? 

The best I could find with a little searching was:

In 2004, over a third (36%) of children aged 6 to 11 logged more than 2 hours of screen time each day.

These children were twice as likely to be overweight/obese as were those whose daily viewing

totalled an hour or less (35% versus 18%), and about twice as likely to be obese (11% versus 5%).

A little lame I know since it's from 2004, but I always say that Canada's about 5 years being in everything.

http://lifestyle.ca.msn.com/family-parenting/health-safety/ymc-article.aspx?cp-documentid=24825106

http://www.obesitycanada.com/