Email # 8

Another email long overdue...

It's St.Patrick's Day...which means that since our last email update we have enjoyed Christmas, New Year's Eve and Day, Groundhog Day and Valentines Day....not to mention countless birthday celebrations, school events/activities/breaks/registrations, and of course, wedding planning.  Overwhelming would be a great word to describe the past three and a half months!

Evie has had appointments with each of her caring departments in that time as well.  In December we had a check up with Endocrinology, who again confirmed that hormone wise she is developing well and there are currently no concerns.  Early January brought an Opthamology check up, and happily her vision also remains on track.  As Evelyn gets older the process of vision testing changes, and they are able to do a more thorough exam.  This is great because it gives the doctors more information to go on to actually confirm results.  Evie will also be able to better communicate what she can/cannot see, etc.  However, I imagine the whole eye drop part will get a little trickier as she not only grows stronger, but also a will to resist!

MRI #6 was on February 6th. As usual, Paul had booked the day to come with me and Evie to Sick Kids.  MRI's remain the one thing I really dont want to do on my own.  It's a lot of waiting, and it's  also the only appointment where I ever have to leave her.  I'm thankful that Paul is able to come, and that his work is so understanding with our situation.  Despite my own discomfort, Evie goes through the process like a pro, and a short while after we drop her off, we get to meet her, all drugged and drowsy in the Recovery room.  The 6th was a Monday, and though everyone says "No news is good news"......Paul and I would much rather a phone call with results.  It never came, and I went to our weekly Friday chemo appointment looking for answers...and got them.  Dr. Bartels confirmed that Evie's tumour is stable, again.  This means there has been no growth throughout the last two scans, essentially a six month period.  This is the positive news.  

It would appear as though Evie's tumour stabilizing coincides with when her treatment plan last changed - which is great.  The new drug that was added however, was only supposed to be given short term.  We were also under the impression that Evelyn was still on a 70 week protocol, which would mean her end date would be the end of March (now). This however is not the case.  We currently have no set end date for chemo.  Our guess it that when her team changed her treatment last september, they established that Evelyn is not necessarily on a protocol anymore.  Paul and I didnt realize this, we assumed we were continuing on, but in retrospect, it makes sense....change the drug, change the plan.  We wish we put that together a little sooner.  So, as far as chemo goes, our plan is now more of a day by day, or MRI by MRI.  Doctors are happy with the results right now, and are hoping to see further stabilization, or better in the months to come.   This has been a hard concept for me to accept...I very much enjoy routine, and timelines.  However, I am now at peace with the idea of "not knowing".  Think about it, there's a lot more we dont know about what is going to happen in our lives, than what we do know....Paul and I now have no countdown, no pressure.  We go through chemo one week at a time, one scan at a time, and in the days between, are enjoying the fact that Evelyn is thriving, and happy.  We do still have moments of anger and frustration, but that's ok...we are confident that we are doing what we need to do, and what is best for our daughter long term....and if that takes a bit more time, so be it - she's worth it. 

One more thing....I wanted to invite everyone to participate in Meagan's Walk 2012.  "Evie's Team" did great last year, with only 5 members and two days to fundraise, we raised over $1,200.00!  Incredible.  Meagan's Walk supports Paediatric Brian Tumour Reasearch, and happens every year, usually on Mothers Day.  It's a 5km walk, from Ontario Place to SickKids Hospital, and ends with a big BBQ/Party!  Registration is not yet open, but I will  be letting everyone know when it is......we'd love to see "Evie's Team" grow!  This year's walk will be on Saturday May 12th.   

We hope you are all well, and again thank you for all your kind words, thoughts and prayers.


Paul & Kristine