Miscellaneous Updates

There have been a few things we have wanted to update everyone on for a while now, but there always seems to be something more important to blog about.  While tonight is the night to play a little catch-up with a few things.

First we are going to start with a little Ryley update.  Today was not a good day for him.  He woke up about 6am complaining that he wasn’t feeling good and shortly there after he started vomiting about every 15 minutes.  By around 9am he was down to every hour which was a great improvement and around 2 or 3 it seemed to settle down and mostly stopped.  The poor little guy spent the entire day laying on the couch in a fair bit of discomfort.  He was sore and stiff from the flu as well as from snowboarding all day yesterday.  He had a soak in the tub and was in bed by 7:30 tonight.  Hopefully he makes it through the night without any major problems.  We also managed to get the Christmas lights down today.  We still have all the blow-ups stuck in the middle of the yard that are frozen in the ground.  That will be a challenge for another day once it has warmed up a little more.

Karlee’s Beaded Journey

In one of our earlier posts we talked about Karlee’s Beaded Journey.  This is where she gets a bead to represent all the different parts of treatment and events that happen.  The KCCFA supplies all the beads to the Child Life Specialists at the hospital who them give them to us as we request them.  Karlee’s journey has grown to almost 5 feet, 6 inches long and is a great way for us and her to look back and remember everything we have gone through already.  Today we did a quick count of all the beads she has so it seems to be worth sharing.


42 visitor beads (this would be higher, but she hasn’t spent much time in the hospital)
42 clinic and hospital trips
41 doses of chemotherapy
35 port access beads
27 poke beads (normally blood tests)
10 lumbar punctures
9 tests (x-ray, ultrasound, ECG, echo)
7 holiday or special events
6 episodes (before diagnosis)
5 KCCFA events
4 admission beads
4 season beads
3 emergency room visits (before diagnosis – now we just go to the unit)
2 day passes while admitted
2 blood transfusions
1 surgery (not a procedure, but actual surgery)
1 port insertion
1 hair loss
1 dental visit
1 diagnosis


It is really shocking when everything is put into numbers as it lets you know how much Karlee has been through just under 6 months and how positive she has been through the entire process.  Ryley is also keeping a beaded journey about the various visits he has to the hospital and the major events that happen to Karlee.  His isn’t near as long, but is still a great reminder of everything he has gone through too.  It is important for us to remember that Karlee might be the one with cancer, but this journey is just as hard on Ryley in many ways.

Treatment protocol and phases


When Karlee was first diagnosed they did a number of test to determine what type of leukemia she had, acute lymphoblastic leukemia, and to determine her risk level.  Everything came back favourable as there was no blast cells in her spinal or cranial fluid and the chromosomal analysis was also favourable.  At this time we were told Karlee would undergo 6 months of treatment and 2 years of maintenance.  We started the induction phase of treatment and Karlee was a rapid responder, meaning she went into remission very quickly.  This determined the course of treatment for the next 5 months.  The next phase of treatment was 1 month of consolidation, followed by 2 month of interim maintenance and finishing with 2 months of delayed intensification.  During our interim maintenance they informed us that the protocol had been changed and that standard treatment was now 8 months.  Since we were still in treatment they would be adding 2 additional months of interim maintenance to the end of her 6 months.


One of the factors in Karlee’s favour was that she is a girl.  Boys have 3 years of maintenance instead of 2 years due to a higher risk of reoccurrence.


KCCFA (Kids Cancer Care Foundation of Alberta)


The KCCFA has been an incredibly supportive organization throughout our entire journey.  They got Ryley into a week long camp only a few days after Karlee was diagnosed, provided numerous pizza nights in the hospital, provided family camp for all of us and have provided numerous events to try and make us feel like a normal family.  Jennifer decided early in this journey to donate $5 per pair of slippers to the KCCFA.  During the numerous craft fairs we were at we had several people give donations to the KCCFA when they heard Karlee’s story.  Jennifer also made bracelets that we sold for a donation to the KCCFA.  After all that was said and done this year Jennifer will be donating $540 back to this incredible organization.


We are thrilled that a portion of the proceeds from the Skate-A-Thon for Karlee will be going to this organization.