Email # 7

Hi Everyone,

I will first apologize and say that I have been meaning to write this email for about 2 weeks now, but somehow time has escaped me.  Though I know you will all understand that, I still feel guilty, as I know many of you are thinking of us, praying for us, loving us, and waiting for the day where we are all given some good news about Evelyn.  Well.....it has finally happened, and we couldnt be happier.

On November 3rd Evie had her 5th MRI.  Paul and I took her to SickKids, and are quite used to the routine of the MRI department.  This time we didnt really know what to think.  MRI # 1 was her diagnosis, so we knew nothing.  #2 was our first check in, we expected good news, but accepted the growth when the doctors explained it to be normal to progress before regress.  #3 was a kick in the gut, still growing. #4 was when my heart basically dropped.  I did not want to be let down once again, so I tried to not even think about it as it was approaching.  It was scheduled a year (to the date) after her first dose of chemo.  We all really needed some good news.  Immediately after her MRI her doctors reviewed the scans and told us they thought it looked promising, potentially stable, but would not officially know until they went through with a technician and reviewed everything.  The following Friday I was able to call Paul and tell him that it was confirmed.  Evie's tumour was stable, at least for now.  Stable is the best news we have been given in a year of treatment, and is the first step in the right direction.  We are thrilled. 

Evelyn began a new treatment in late September.  A fairly new drug, more commonly used in adults with aggressive tumuors, more commonly other cancers.  It is "thinking outside the box" as the other "typical treatments" have not been working.  The drug is used only when other options have not been successful.  Evelyn is administered this drug on a bi-weekly basis, via IV infusion...which basically means every other week we are at the hospital the majority of the day, similar to when she first began treatment.  This drug is given in conjunction with a drug she has been on since March, given weekly.  It is undecided how long she will remain on this treatment, initial hope was that it would kick start the primary drug into working, and then she would be taken off.  I assume she will stay on until the next MRI and then they will decide what the best path to take will be. 

There are clearly concerns with any treatment, this one is no different.  Her vitals need to be taken every 15 minutes throughout the infusion, and I often am asked to obtain a urine sample.....not always easy!  As always, Evie's size and age are big concerns.  That being said, or little girl is growing up.  Evie is now 27lbs, getting taller and taller.  She is a full on toddler, and quickly becoming quite the little girl.  Her blonde hair is getting thicker and longer, and is hinting at a bit of a curl as it wisps away over her ears.  Her nystagmus (shaky eyes) is settling down, and is hardly noticed.  Those who see her regularly, and even those who dont, are happily surprised by how much she has grown lately.  Every day she is looking plumper, a little toddler belly hanging out over her pants.  She runs around the house, climbs on the furniture, often falls off of it.  She finds purses and sorts them for me (um, thank you?!).....she carries around my cell phone and has in depth conversations with Dada (even when he is sitting in the same room watching her).  She likes to do things her way, even if that means keeping her winter hat on in the house for a good half hour after we've come inside.  She runs away often to the park next door, insisting on more "yides" (slides)...no wonder it takes forever when Paul is out doing yard work.  This morning she even gave me quite the look when I suggested she have Cheerios for breakast....."Mama, unt oop boops peeeeeese" (translation, Mama, I want Fruit Loops please!).  Please is always said with a giant grin and shoulders raised....makes it hard to say now!  Wrapped around her little finger, yes we are. 

Otherwise we are all moving forward.  Isabelle is adapting to life as a 2nd grader, slowly realizing that school isnt all fun and games as it has been in previous years.  It's tough, but she's working hard, and doing a good job.  In case word has not spread to everyone, Paul asked me to marry him in October!  Wedding planning has begun, and I think my experience in tv is greatly easing the process.  It's very similar to planning a special event or one night show.....except I'm used to doing it on someone else's dime!  Either way, we're having fun with it, and are very much looking forward to the wedding. 
As we are in our last days of November, we realize that the Holiday season is just around the corner.....we hope that we will see all of you, or at least most of you, in the near future.  Evie has appointments coming in December and early January, so we wont have any other news until at least then.  So for now, enjoy the build up of Holiday Cheer!

lots of love,

Paul and Kristine

ps.  to my lovely loyal friends and family......Air Farce New Year's special is airing on NEW YEARS DAY this year.....crazy eh?  Watch it. 

A little for you, a little for me...

November 25

"So a funny thing happened today....." 

Ever notice how when people say that, it doesnt necessarily mean that the "thing" that happened was actually funny?  Well imagine me saying that, but adding "at the chemo clinic" to the end of that sentence....I bet you're thinking, there is no possible way this story is actually funny....but just wait...

Evie and I were at the hospital, just like any typical Friday.  It was a "long" day, and by 10:30am Evelyn had been accessed, and hooked up to her IV, and we were placed in our room for the duration.  Now it was time to wait for her chemo to actually arrive.  Sometimes this takes an hour, sometimes 2 or 3.  It's actually a little frustrating at the discrepencies week to week, but when it's totally out of your control.....you just get comfy, bring more snacks, more toys, more books. 

Evelyn is much more active now....in fact she is more active with each passing week, be it at the hospital or at home.  This is a good thing of course, except it means that I have to chase after her with her IV pole close behind so that it doesnt pull too tightly, otherwise her needle could pull out.  This has happened before, and if can be quite serious, especially if it happens during the chemo infusion.  It stresses me out to be honest, so much so I've often found myself trying to figure out a better way to get this done.  At the same time, I'm sure it is hilarious to watch.  This woman running around a small hospital room, or worse the hallyway, after a toddler who's new trick is not only walking, but "unn" - arms waving hysterically in the air, an stricking resemblance to ET the extraterrestrial.  

So there we are, taking a break from "unning" and sitting nicely on our hospital bed, quietly looking at some books.  Finishing the stack I had brought, Evie quickly stood up.  She quickly turned to look at me, horror in her little face, and then tears and cries.  I looked frantically to try and figure out what had upset her.....and that's when I saw it. Evie's line was pulled very tightly, she had stood up on it, and it was yanked right out, the needle in her port falling out of her shirt.  As this was not the first time, I knew that it was not good, especially as her chemo drip was not yet finished.  I immediately lurched forward on the bed and grabbed the "CALL" button, paging the nurse to our room.  I could hear them in the hallway coming to see what was needed...I snuggled Evie so she would settle down, which is when I noticed....Evelyn's needle, still connected to her IV drip, was in my shin.  I was now hooked up to the machine, getting my very own dose of chemo.  Without even thinking I pulled it out.  Almost instantly a nurse was in the room, and as I attempted to explain the situation I saw the confusion and likely a bit of hilarity hiding somewhere in there too. 

Within about 20 minutes everything was back to normal; Evie had been checked out, cleared to go home, and I had a chat with one of the neuro-oncologists to ensure me that my tiny dose of chemo would leave me generally unscathed....still shaken up, coming down from a bit of an anxiety attack, and slightly mortified, I couldnt wait to leave.

I guess it's more one of those, funny now that it's over.......so it's over, and it's fine....we can all share a laugh.....god knows the nursing staff at 8D likely are.