5th email

Hello again,

Once again the past few months have escaped us.  Spring has arrived and it appears that the weather may actually start to accommodate.  It has been much more of the same, kind of getting to be routine with all the appointments, but here are the highlights:

Roughly one month ago Evelyn's doctors decided that it would be in her best interest to change her drug treatments.  Despite being given 2 pre-meds, her allergic reaction just wouldnt go away.  With her new treatment plan she is now given only 1 drug (as opposed to 2), and is no longer required to take the pre-meds, and also doesn't require the anti-nauseant afterwards.  This new drug is also quicker to administer as it is referred to as a "push" (think any typical vaccine) as opposed to an IV drip - so our days at the hospital are significantly shorter.  The down side is that the treatment plan is given over a longer timeframe, an extra 10 weeks to be exact.  It is also given every week, no weeks off.  She has had 4 doses and seems to be tolerating it well.  

The new date we had been given for MRI # 2 was March 11.  Well, sadly that day came and went with nothing.  We got the call at dinnertime on March 10th - the MRI department had an emergency and Evelyn was being bumped.  To say we were disappointed (again) would be an understatement.  Thankfully it was rescheduled for only 2 weeks later, and Evie received her 2nd MRI on March 24th.  We were fortunate enough to be given the results that same day, though they were not as positive as we had hoped.  The exact words we heard were, "It seems as though the tumour is more generous than the initial scan" - a nice way to tell us it had grown.  Based on the results we were told that a change in her drug treatment would have been necessary even without the allergic reaction - so it was a good thing we had already started a new one.  Given the changes to her treatment, the plan is now essentially to wait until the third scan to see if the new drug is having a better effect.  One positive is that despite the scan showing an increase in mass, Evie is thriving as a baby.  

She was seen by opthamology on March 11th and they were happy with her progress.  She no longer squints to see things, though she sometimes turns her head.  Unless we find a reason, her next appointment isnt until August.  At 16 months I'm not sure if the eye exam will be easier or harder!

We had another trip to the ER last week - nothing serious though.  It's a bit of a shame that we need to spend an evening in the ER just to get the ok to give our little one some tylenol.  That being said, we do understand the seriousness and risk involved if she comes down with a fever, it's just unfortunate we have to put her through so much (waiting and bloodwoork) in order to provide her some relief.  

Fevers may become a bit more frequent as Evie is finally teething....she cut her first tooth a couple weeks ago, and there are about 3 more that are definitely close.  I cant tell you how excited we were about this.....I kept waiting and waiting, watching all of her little baby friends with their mouths full of itty bitty teeth, Evie with her big gummy smile - now a thing of the past.  It took 11 1/2 months, but she did it.  Otherwise she is progressing beautifully.  Though she has yet to take those first steps on her own, she is getting more comfortable walking with people, and cruises around the furniture no problem.  Monkey that she is, she is even climbing in, out and over everything.  Her eating habits and weight are essentially a non-issue.  She is still a "little" baby, but is not a concern.  

As we are already more than a week into April we are counting down the days....Evelyn will be 1 on April 13th!  I cant believe this.  The past year has gone by far too fast.  Someone I know said about 2010, they cried their happiest tears and their saddest, and I think that applies to me as well.  I think this is why we are all so looking forward to celebrating Evie's birthday - she is such an incredible little girl.

Thanks again for all the support, this is still something we are getting used to and it helps to know, months later, that she (and we) are still on your minds, and in your thoughts and prayers.

Paul and Kristine