Evie Update #19

It's beginning to look a lot like Christmas...!

Well....the last six months have been a little crazy, but I'm finally able to sit down and share with you once again. 

Shortly after our last update, Evie's team made their 5th appearance at Meagan's Walk raising over $10,000 this year for Pediatric Brain Tumour Research.  This is a very delayed THANK YOU to our ever-growing team.  We think you're all pretty great, and are very lucky to have you in our lives....it takes a village.

Over the summer Evie got to attend her first day camp with Camp Ooch. For two weeks in July she got on a bus, traveled to camp for the day and had an absolute blast. 

The end of summer and the start of the school year....Evie is now "a Junior" (her hip short form for Junior Kindergarten - ha!).  The girls started the school year at their new school (because by the way, we also had to move over the summer and bought a house!).  The school is working out really well, we have met with them about considerations Evie requires, and they have been great about helping us where ever they can.  Currently her needs are minimal, but she does have a vision itinerant teacher who works with her once a week.  After recent assessment with her Occupational Therapist at Holland Bloorview,  and similar notes from her V.I. teacher, Evie will be receiving additional therapy to work on a few "developmental building blocks" come the new year.

Evie has also now been Off Treatment for 14 months...crazy right?  Her medical routine now is as follows:

Port Flushes: every six weeks

Endocrine, Neurology and Physio appointments: every six months

Neurosurgery: annually

Occupational: was every six months, but Evie will be starting back on a weekly basis in January.

Ophthalmology, and MRIs: every three months

MRI #16 was in October.  It's taken me a while to fully understand the results and I've had many conversations and asked many questions.  What we know is that her tumour has not grown, but it has shown a change.  It's currently unknown whether the change visible in this scan is a technical flaw (entirely possible) or a sign of tumour activity (also possible).  We'll have a better idea after her next scan, which should be sometime in January. 

Evie's last Eye Exam was in early November and though the results were the same (as previous exams in the last 6 months), she complains often about her eyes hurting.  With no real explanation, it was decided to keep the eye exams every three months to make sure nothing is missed.  In the meantime we're working with her on trying to better describe exactly what it feels like. 

Over the summer Evie, as a Wish Kid, was asked to be a part of a campaign run by Sofina Foods as a new corporate supporter of Children's Wish.  We shared with them photos, drawings and Evie's story.   A few weeks ago our family was invited to their head office where we were surprised with a party in her honour.  It was so special for the girls, and humbling for us.  Evie's wish planning is underway...

And....yep, that kind of sums up Evie in the last six months!  The rest of us, we're good too.  Isabelle is doing really well at her new school, now in English and learning the clarinet - she was both "excited and nervous to be the new kid".  Paul and I are loving having a place we can call home and somehow find time on the weekends between kids activities to paint and debate (sometimes endlessly) which projects "need" to get done.  It's all coming together....and though I love (LOVE LOVE LOVE) the holidays, we can't wait for BBQ season to have a big party!

Until next time...Happy Holiday, from our family to yours :)

Paul & Kristine

Isabelle and Evie

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