January 23

These last couple weeks have been pretty quiet. We've had three clinic visits since last post - things have gone well. The nurses have kept a close eye on Evelyn during treatment to see if they can find a cause for the rash that appeared a few weeks ago. Since then nothing has come up so at this point we aren't too worried about it. Despite Steve, Charlotte and I having colds Evelyn has managed to stay healthy - we are so thankful for that and continue to pray Evelyn stays healthy - she has been doing really well lately.
Last week I was able to talk to our nutritionist about Evelyn's appetite while she is on steroids - lately she's been picking one food (pretzels, chips, anything of the salty variety) and eating only that in excess for about four days straight. She suggested we supplement with Pediasure on those days and not worry too much as long as she is eating healthy the two weeks off steroids. On a regular basis we also meet with the physiotherapist, social worker, occupational therapist, child life worker, and Evelyn receives check-ups every three weeks - there are a lot of people involved in her treatment to make sure things are going well and Evelyn is developing despite her treatment. Today they have increased one of Evelyn's chemo meds so we may notice the side effects increase also - tonight she seems to be doing okay besides a being a little nauseous. This med will keep increasing slowly over the next 20 months. We are back on the steroids today and hibernating for the weekend :).
I thought I would make up for the lack of pictures in the last post and show you what's been going on around here :).

Enjoying their Christmas presents

Clinic days - always fun when Daddy comes

One of our amazing nurses, singing songs to keep Evelyn distracted while she gets her blood pressure taken

The day the rash appeared - it was a long morning :)  

 

Our wonderful Child Life worker doing crafts with Evelyn

Evelyn threw up her tube so she was Tubey-free for a whole week!

 

 

The couple days in January when it wasn't freezing cold we got out with the girls 

 

 

Evelyn got a new baby doll for Christmas so we did a quick NG tube procedure on her

 

 

Hanging out at Nana and Papa's last steroid round, it had its ups and downs

 

 

 

Steroids were a little rough last time

 

 

But in between we are blessed with a funny, energetic, full of life little girl whose smile lights up our hearts every day

 

 

Evelyn's hair is growing pretty fast :) :)

 

 

Lindsey and Stephen

Ps 86:5 “For you, O Lord, are good and forgiving, abounding in steadfast love to all who call upon you.”

 

 

 

 

 

 

 

 

 

 

 

 

 

January 7

Happy New Year to all! Our Christmas was a busy and eventful one. Evelyn stayed healthy and her immune system was up so we were able to attend all our family events. Unfortunately I'm having trouble uploading my pictures so this post will just be a quick update :).
In between the celebrations we had a couple clinic visits. The day after Boxing Day was clinic day - we were told to come bright and early, it was suppose to be busy since they had been closed the previous two days. We must have got there just at the right time because we were in and out in under an hour - our fastest visit yet! :). Evelyn's blood work showed she was neutrapenic that day - there's a certain point (or number) they go by to tell where her immune system is at. This means she was at a greater risk of getting an infection or sick. Our nurse told us it should start to go up over the week. Until then we stayed home and away from people to ensure Evelyn stayed healthy.
Unfortunately the next week proved our longest visit. Because of the crazy snowstorm that hit on Thursday we made it two minutes down the road before realizing we would never make it to Hamilton safe so we went in Friday instead.
Every other week one of the chemo drugs Evelyn gets is a bit of a longer process - a needle is inserted into her port and an IV hooked up, the chemo runs through for an hour then her blood pressure gets checked three times after it's done. This drug is called Oncaspar. On the other weeks she doesn't get hooked up to an IV - her port is accessed, chemo pushed right through her needle then she is de-accessed and we go home. This week Evelyn was scheduled to receive her Oncaspar. It was really busy so Evelyn was one of the last ones to get taken care of. The chemo was going smooth but over the course of the morning Steve and I noticed a few spots making their appearance on her legs and belly. The doctor checked her out and prescribed something for a yeast infection (she had a bit of a rash on her bum so the doctor figured it must have been travelling up a little since there were only a couple other spots). Once her chemo was finished and nurse was taking out her needle I noticed a bigger spot on her neck. The nurse suggested we take off her shirt so the doctor could get a better look - we then noticed the rash had spread to her arms, most of her stomach and cheeks. The doctor was called in again to take a better look - between her and the three other nurses they figured it might have been an allergic reaction to the Oncaspar. They weren't 100% sure so in two weeks they will try the drug again and if Evelyn gets the same reaction her treatment might have to alter a bit since she can no longer use that drug. This makes us a little nervous but we will cross that bridge when/if we come to it :). The nurse gave Evelyn some Benadryl and we were told to wait it out for a little bit - see if the rash changes at all. We hung around for about two more hours - the rash was less red but still very much there. Because she wasn't experiencing any other signs of a reaction (trouble breathing, etc) we were able to go home and advised to come back if the rash got worse. Thankfully by dinner time the rash was pretty much gone.
Evelyn was also sick for about 24hrs over the holidays so of course that tube came out again. The tube was put back in on that same clinic day so needless to say it was a long morning for Evelyn and she was wiped by the time we rolled in the driveway at 3:00pm.
We are knee deep in steroids and colds right now, symptoms turned up to the max and someone's asking for more chips right now, so until next time :).

Lindsey and Stephen

Romans 8:28 "And we know that for those who love God all things work together for good, for those who are called according to his purpose."