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
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:
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:
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