Chemotherapy- Course 1.1

On May 14, 2014 we headed back up to Primary Children's Hospital to get Rylie's first follow-up dose of Vincristine. This was the first time her port was going to be accessed while she was awake so we were a little afraid of how she was going to react. She has been very cautious about showing people, adults mainly, her port and she is super sensitive about people wanting to look at it. When we explained all of that to the nurse up in oncology she decided we needed to spend some time with a Child Life Specialist so Rylie would not be so scared and anxious. 

So Rylie got to play doctor with her baby...

She got to color...

We took lots of selfies (She loves to look at pictures of "Rylie")

Ate lots of cookies...

Played with some medical supplies and tried to get use to the idea that like it or not were going to have to get familiar with them... (She is NOT a fan of the masks)

And of course we had to play restaurant while we waited for the pharmacy to bring up her chemotherapy. 



She did really well with her second dose. We were in and out of there in about 3hours (pretty short since we average on the side of 4+ hours). This chemo is pretty mild so we did not have any immediate side effects, just some exhaustion. 

Unfortunately by about saturday her blood counts were low and we started to get a glimpse of just what our year was going to look like. Up until that point Rylie has did very little complaining. But Saturday you could just tell she was miserable. Saturday night she started complaining her mouth her, that's when we noticed all of the mouth sores. The poor little thing was just covered in sores. We tried everything we could to help her get comfortable but nothing seemed to help. he just wasn't feeling well and who could blame her.  She also started to run a fever which made for a long night of worry. Finally by Sunday night we were able to get her "comfortable" enough to get some sleep. 

It was our first smack in the face as to just how much our lives have to change. Brett and I have always been "on the Go" type people and Rylie has always been right there along side of us. She pretty much goes every where with us... if we can't take Rylie we typically don't go. She has always been right there with us and this weekend it became incredibly clear that her little body just can't keep up anymore. You know, I have sat here for months wondering why this is happening to us... and after a good long cry last night it has become apparent to me this is a lesson in slowing down and enjoying the little things... a lesson I really needed to learn