Saturday, April 23, 2011

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):

  

Sunday, April 17, 2011

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:

Sunday, April 10, 2011

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:


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