Buckle up friends, because apparently we have hit yet another bump in our road...
About
a week and a half ago we were given some news about Evie. It was not
good, and to be honest, just thinking about it causes a pit in my
stomach, and tears in my eyes. We have taken a bit of time, largely
keeping things to ourselves until we felt better prepared to publicize.
I am not saying we are ready now, I certainly don't feel that way, but I
also feel like I just need people to know what's going on.
Evie's tumour, an optic pathway tumour, has now
compromised her vision. Her eye doctor has told us that the vision in
her right eye is so bad, it is essentially non-existent. This means she
is unable to see from her right eye. Her vision in her left eye is
better, but is not perfect, and the nerve shows damage as well. Evie
will need to start wearing glasses, not because they will help her
vision, but because we need to have a physical shield to protect her
left eye (think any potential external eye injury, bumping, something
being thrown, an elbow...). We will need to monitor her closely, and do
what we can to protect her left eye from further damage (ie. hats and
sunglasses). Aside from that, there is little that can be done to
restore vision in this type of situation.
This has meant that we have also become connected with
many more people. For the past two months Evie has been connected with
Toronto Preschool Speech and Language, Low Vision Program. They have
been assessing her, and accompanied me to her appointment, and most
recently followed up with me at home to discuss what steps we need to
take now. It is very overwhelming right now because there is just so
much to process, to learn, to do, not to mention more assessments and
meetings to take place. Evie starts kindergarten in a year, and it is
important to get "everything sorted out" before she starts....believe it
or not, this makes it a
Please know that Evie can see. At three, it's hard to
get a straight answer out of her about anything, but we know she can
see. I have already caught myself being a little bit more careful with
her on stairs, and following a little closer behind when she's
playing...and we would of course appreciate the same cautions be
taken...but at the same time, please treat her the same. She's the same
little girl and it absolutely breaks my heart to think of people
treating her any differently - ever. She's sweet, and kind, and totally
adorable and she really doesn't deserve another thing to be stacked
against her favour. She is strong, but even the strongest of people
rely on the love, strength and support of others from time to time. I
am confident that the community we have built around her will be exactly
what she needs when the time comes.
What's frustrating, is that less than a week after
hearing such upsetting news, Evie had her 12th MRI, and we found out
immediately afterwards that her tumour had shrunk again. It's difficult
to express my enthusiasm here, but this is great. It was a happy
surprise. Just reflects my sentiments in my last email, you never
really know with this stuff. I guess we just take the good with the bad
- they seem to come hand in hand anyway.
Each of Evie's other follow ups have gone well, they have
been uneventful and we are on cycle 7 of her chemo protocol. I am sure
Evie's Neuro Oncology team will have something to say about the
Ophthalmology results, but I also expect them to take their time
reviewing her test results in combination with her scan results. For
now, we just keep doing what we're doing....and go buy the cutest
toddler glasses we can find.
Paul & Kristine
"...and though she be but little, she is fierce."
