Hi there,
It has been another couple months of change around our house! Since I last wrote to all of you a lot has happened - life is ever-changing I suppose. Just about 9 months into the process, next Friday July 29th marks the 35th Chemo Dose...Evie's treatment is scheduled for 70 weeks, which means we will officially be half way there! This is a milestone we have very much been looking forward to, and we will celebrate by taking off to the cottage for a few days. We cant wait!
We celebrated Evie's 1st Birthday on April 13th and were once again overwhelmed by the love and generosity of our friends and family. So in case you didn't hear it then, we Thank You. As many of you know, we participated in Meagan's Walk this past Mothers Day. Not only did our participation result in $1,200 in funds raised, but it provided me an outlet I didn't know I greatly needed. This event really touched me, so much in fact that I felt compelled to write them an email of gratitude. This started a chain reaction: my email and a few photos of Evie and our team were then published in a Meagan's Walk newsletter, and once that was sent out I heard from a family whose son has a story remarkably similar to Evelyn. In fact, step by step it is almost identical - this is pretty amazing as the kind of tumour they have is very rare, especially in children their age. Their son is now 5 and is thriving. This is just what we needed to hear, and it restored any hope that may have stagnated over the months.
In May Evie was given the go-ahead to start "Express Chemo". While there is no change in her actual chemotherapy, our hospital visits are significantly sped up. This is basically because she is given the ok for chemo each week based on the previous week's bloodwork results. In the past they would take a CBC (Complete Blood Count) each week and we would wait out the results and see Doctors for approval to get chemo that day...if the counts were too low, chemo is a no go. So now she gets the CBC each week but we use the previous weeks results and basically go on good faith - that is as long as we have no concerns. We then check in with her team every 6 weeks. This has been working out really well, Evie tolerates the chemo like a champ, she is doing great.
In late June Evie met with her Endocrine Dr. They have no concerns with her hormone levels, which once again clears us for another 6 months! We also had MRI #3 on June 29th. Cautiously optimistic as we have noticed Evie's nystagmus seemed to be getting better, the results were a mixed bag of sorts. Evie's tumour has grown again, an additional 3mm, however the growth from MRI #2 to MRI #3 has slowed (compared to MRI #1 to MRI #2). This, along with the fact that we feel she is doing well, is a good sign according to her team. It is very common for a tumour to progress before it starts to regress. We also need to keep in mind that as Evie is on a low dose/high frequency treatment plan, it takes time. Her doctors have decided that they would like to give her current chemo drug a few more months, as results can be delayed (she started this one 4 months ago). The plan is to do the next MRI in 2 months as opposed to 3, and if there is no improvement, a new treatment will be decided. We are currently waiting for MRI #4 to be scheduled, should be the end of August. This will be around the same time she sees the Opthamology team again.
Medical news aside, Evelyn is quickly approaching toddlerhood. She is up to 6 teeth, and she has more and more words every day. She is sooo close to walking...we get a few steps at a time every now and then - more often in the last few days! She clearly knows we are encouraging, as she often drops on her bum and giggles when we ask her to show us her walking! She is growing like a weed - has almost tripled her birth weight (she is holding at 20.5lbs), and has grown over 10 inches since she was born! With summer in full swing she has a genuine love for the public wading pools - and with the weather lately, who can blame her!
We hope you're all enjoying the summer....it might be hot but it will be over before ya know it!
Paul & Kristine
