Evie Update #17

Well...six months since my last update seems a little inexcusable doesn't it?  Let me take a minute and rewind...

At the time of my last email I let everyone know that Evie's most recent MRI was good news, her tumour appeared smaller, however her vision had been affected.  We were dealing with the reality of her vision loss, picking out glasses and trying to enjoy the ends of summer, all while on cycle 7 of her chemotherapy protocol.  

There are a few updates since then, and the one I would like to share first is the happiest:  on October 11th Evie finished her TPCV Chemotherapy Protocol.  This means, she finished chemo...and has been officially off treatment for three months now.  Incredible right?  I understand that many of you know this, but as I had never emailed, I really wanted to make sure this news was in the forefront.  It was a bit of a surprise to us, we had been told to expect to start another protocol, so I was definitely not prepared.  You need to understand, after going to the clinic every week for three years, it's an adjustment to just stop going....but a pretty great one!  

The end of chemo means that we now only go to clinic every 6 weeks for a port flush (as she still has the port in her chest, and it needs to remain clean and infection free).  Around those 6 week appointments, we still have follow ups with all other clinics, and she still remains on all medications that have been prescribed.  In November we saw Neuro Surgery, and they are happy with her progress.  In December we saw Endocrinology and they said Evie is growing wonderfully and have no concerns currently - she is still taking a thyroid medicine every morning.  We only see the stroke clinic once a year, but for them she is on aspirin daily.  She had an MRI on December 20th and her tumour is stable - as the first one since the end of treatment, this is great news!

With her recent vision loss, we have seen Ophthalmology a few times since the summer in an effort to stay on top of her vision changes.  Evie picked out two pairs of glasses in August, and though it took me a bit of time to cope with it, she actually loves wearing them....not surprising, the girl loves to accessorize.  Also not surprising, she prefers the more expensive pair (Ralph Lauren - ha!).  Our most recent eye appointment was this past Friday.  It was a three week follow up to an appointment she had just before Christmas.  These two appointments revealed and confirmed a bit of bad news.  On top of having no vision in her right eye (what we found out in the summer), there has been a decrease in vision in her left eye.  We were given a prescription, and Evie's (once protective only) glasses are now corrective.  She actually smiled very big when she put them on yesterday with her new lenses, which is great, but this has been another big pill to swallow.  Evie is still taking a medicine that aims to protect her optic nerves ("it tastes horrible") so hopefully it's doing something.  Outside of SickKids, we are still working with the CNIB, and the Low vision program, and we are expecting much assistance in the next few months as we register Evie for Kindergarten!

Evie's PT and OT are also going really well.  She has been cleared to visits just once every two months.  I have found support from her PT, more than I ever expected.  She is a great insider to Evie's health care, but outsider to her SickKids team.  She is great to talk to (even if only for an hour every two months), and is always happy to see Evie.  We have seen Evie's improvements ourselves too.  She is now running, and jumping - though anything but graceful.  She can swing on the monkey bars, and last week surprised me a lot by her active participation at a Circus School birthday party.  

The past few months have also been full of things other than appointments - believe it or not!  We have been connected with so many wonderful organizations.  Our family was invited to Great Wolf Lodge for a holiday party, we got to stay overnight and enjoy the madness of that place....we all had a great time! Evie is almost old enough to participate in Camp Ooch events too, and this morning I filled out paperwork from the Children's Wish Foundation of Canada - Evie get's a wish! 

I want to say thank you to all of you.  It's very humbling to write these emails and realize that at update 17, and over three years, we have all of you around us.  Our  community is constantly expanding, from family, friends, coworkers, acquaintances, other cancer families, medical health professionals...and friends I had long lost any contact with.  Please know that it the darkest of times, when the tears flow, and things seem horribly wrong - it is this community, that keeps us strong....well, that adorable squinty smile helps too.  We are terribly grateful for both.  

One last note....Evie's Team is up and running...by now you know the deal, so if you want to come join us or donate, just click the words!

xoxo,
Paul & Kristine

Isabelle, Evie

"and though she be but little, she is fierce"