July 16

A few weeks ago we had the opportunity to go to Camp Trillium again as a family, this time for five days. Charlotte has been waiting since last fall to go back. We were excited knowing what camp was all about this time around. We didn't have to be at camp until 4pm on the Monday so I thought I had lots of time to pack and clean house before we left but lately Evelyn likes to surprise us and this day was no exception. We noticed some spots on Evelyn's legs and one on her face that hadn't been there the night before, we thought they were mosquito bites but over the course of a couple days more had appeared. I called clinic that Monday morning - they were really uneasy and wanted us to come in to get them checked, especially since we were headed to camp. We were quite nervous because over the phone our nurse said it sounded like chicken pox - this would have been a huge road block. We were put in an isolation room and the doctor was able to see us quickly. Once she was examined it was determined she did not have chicken pox because no other symptoms were present and the spots weren't typical to pox - praise God! We were given the go ahead to go to camp so we rushed home and finished packing our bags.  We arrived around 4pm, was shown our cabin and met the girl's special friend for the week. Like I've mentioned in a previous post Camp Trillium truly is a magical place - the whole week was packed full of activities and fun stuff for the girls and lots of relaxing, coffee and conversations for the parents :). It's so nice for all the cancer kids and their families to come to a safe environment to relax and be just be kids, putting treatment and the daily grind on the back burner for a few days. Here are few pictures from our week:

That week Annalise Carr came and everyone who wanted swam across the lake with her.

Steve and I enjoyed the views for most of the week

 

Lots of crafts, dress up, swimming and playing at the park

 

We were there on Canada Day so we enjoyed fireworks too!

At the end of the week Camp puts on a talent show where every child has the chance to go up on stage and showcase a talent. Our girls loved the idea, even Evelyn. We were skeptical that Evelyn would go up on stage seeing as she can be quite shy sometimes. Charlotte was set on singing a Camp song about diarrhea but quickly changed her mind when she saw what the other kids were doing - Steve and I were VERY relieved :). Instead they sang along to Let it Go, Evelyn all dressed up as a unicorn. 

 

The week flew by too fast but we are so grateful we were able to go. Lots of fun was had, new friendships were made and we now look forward to next time we get to go.

Another opportunity we had was to go to Marineland. Evelyn was on steroids on the specific day of the tickets but we thought we would try since we knew she would enjoy herself. We even ran into a few other cancer families and had lunch with them :)

 

Last week Thursday we overcame a huge milestone! Evelyn had her very last lumbar puncture! This is one of the first "lasts" as we count down till the end of treatment. Lumbar punctures were probably one of the harder things of treatment - Evelyn had to fast overnight and throughout the morning, there's always risks with sedation and it's often a long tiring day with lots of waiting. We also realized quite quickly that Evelyn gets very nauseous when she doesn't eat and drives in a vehicle; also from the sedation itself. We learned lots of tips and tricks to help the morning go more smoothly such as nausea meds, hiding all the snacks (because she will find them), and always always have a bowl and a change of clothes in the van :). She's had roughly 15 lumbar punctures (if I counted correctly) and we are so grateful that overall, despite the lousy side effects, the Lord has watched over Evelyn and every procedure went well. It feels good to say we are done that part!

Trying to get a good picture :)

A small change that we've been experimenting with the last couple steroid rounds is tapering the end of her dose. The last couple rounds the withdrawal from the steroids seemed to be worse then the days that she was actually on them, resulting in a very rough, angry and exhausting day. Our doctor suggested to extend the steroids two days and taper them the last 3 days. Usually her dosage was Thursday-Monday and Tuesday being the worst day but now we've done Thursday-Wednesday, the last 3 days tapering doses. We have done this for two rounds and think we have noticed a difference. Even though the effects last a couple days longer they aren't as severe. Its hard to say for sure if its working because some rounds are a breeze and others are a struggle doesn't matter what we change. The countdown is on in this area too - only 3 more rounds!! This may be a bigger celebration then the end of chemo since it's where we experienced the worst side effects. And 70 more days of treatment!! :)

Lindsey and Stephen

Psalm 86:10,12: "For you are great and do wondrous things; you alone are God. I give thanks to you, O Lord my God, with my whole heart, and I will glorify your name forever."