Hi friends,
It's starting to look like Spring has
Sprung......and we're thrilled! Spring is a new beginning....and after
this past winter, our family is totally ready for that.
As far
as the medical goes, the past few months have actually been fairly
quiet....which is fantastic. Evie has started her 4th cycle of this
chemotherapy protocol, which has a total of 8 cycles. She is still
tolerating it well, though we have started to notice some things; Evie's
hair is thinning (on this protocol thinning is quite normal, and she is
not expected to lose her hair completely), and she is suffering the
effects of her 4 day at home meds a bit more, on a slight delay. Evie
is able to take her meds at home with ease, it really is incredible how
cooperative she is about it, even when being woken up at midnight and
constantly commenting "this medicine tastes yucky", however the week
afterwards, she is a bit grumpy, a bit tired. She seems to get through
it, and she makes it easier for us to as well.
We had an unsettling appointment a few weeks ago with a new SickKids
clinic. Upon careful review of her last MRI (Jan. 24th), it was
discovered that Evelyn suffered a small "silent" stroke. As you can
imagine, this was not easy to hear. Everyone has had so many questions,
mostly along the lines of "when?" and "how did it go unnoticed?" I'm
going to say it right now - tread lightly here people. Paul and I were
devastated to learn this news, and there have been many feelings of
incompetence and guilt that have followed. Just try and think about
this, nobody knew. The time frame we have been given, is "sometime
between MRI scans" - because the stroke didnt show up in November, but
did in January. During this time period, Evie was under the care of
many health professionals, and I have talked to all of them. The signs
we would have perhaps noticed were simply weakness in her left arm,
specifically in regards to muscle tone. Well, as many of you will
remember, when Evie came home from the hospital in November she was so
weak she couldnt sit up unsupported, and had to essentially re-learn
everything. I have gone over her records with her therapists at Holland
Bloorview as she was in therapy every day, and never once did any of
them note a weakness in her left arm, at least not any more than in her
right. This is precisely what makes it "silent". Really, it's kind of
incredible that this has happened and we really arent seeing any
effects. Moving forward, it does mean we have more to watch out for.
Evie now takes aspirin daily to thin her blood and reduce the chance of
another stroke. We now also check in with the SickKids Stroke clinic.
We are now waiting on follow ups with Opthamology (April),
Endocrinology, NeuroSurgery, Stroke Clinic (all in June), and her 11th
MRI (hopefully in April or May). With therapy, Evie sees Physical
Therapy twice a month, but has graduated to once a month for her
Occupational Therapy - incredible. Chemo is still every two weeks. In
between all of this, Evie has started swimming lessons, and in a few
weeks will celebrate her 3rd birthday! Pretty crazy how time flies.
I will leave this email by again reaching out to you, our amazing
friends and family by reminding you that Evie's Team is participating in
Meagans Walk 2013. We invite you to join our team and support a great
event - it really is a lot of fun.
You can join in the fun, or make a donation here:
Join Evie's Team
Support Evie's Team
As always, thanks for the love and support,
Paul & Kristine
