Presentation for KCCFA Board of Directors Retreat

This is the presentation we had rolling on the screen during our speech this morning to the KCCFA Board of Directors.

Another Clinic Day, Beaver Camp and Sunday Trip to the Hospital

It has been a while since the last entry (probably due to the fact that life seems to be really busy) so there is a bunch of stuff to catch everyone up on.


Tuesday was a regular clinic day, but was also the start of the interim maintenance phase.  She is once again on Vincristine and is now on an increasing does of MTX by IV.  We are already starting to see some of the effects of the Vincristine already; she doesn't have the strength or endurance that she had before.  She can no longer walk to school with Ryley and has issues even going for short walks.  The MTX that she is on is now being given through her port.  The dosage of MTX will increase through the duration of this phase.  Due to this increase we are now on a 10 day rotation which results in a Friday - Monday rotation.  It is going to be interesting to see how she reacts to this new treatment.


Tuesday was also the first day Ryley started complaining about a very sore throat and pain in his ear when he swallowed.  He stayed home on Tuesday and Dad called to try and get a Doctor's appointment for him.  The earliest they had was Wednesday morning so Ryley stayed home then and went to his appointment.  When the doctor saw him he felt it was strep throat and prescribed a course of oral antibiotics.  Due to the contagious nature of this we felt it was best to keep him home for a few more days to protect the rest of the class.

Thursday afternoon we got an e-mail and a phone call from Mary with the KCCFA asking if we would be interested in tickets to the Wiggles on Friday night.  She thought of Ryley and Karlee when she saw these tickets come across her desk.  Since we didn't have anything planned and because the kids would love it we said we would take the tickets.  Thursday night was another busy night around here.  Dad went to a hockey team meeting to decide what we are planning for this year.  It sounds like we are going to have a good and busy hockey year with a great group of kids and parents.  Thursday night was also the night Mom has to bake 120 cookies for the Beaver camp.  After the meeting Dad had to run to Superstore to get chocolate chips to allow Mom to finish the cookies.

Friday we headed to the Saddledome to take in the Wiggles show.  The seats were absolutely incredible; 2nd row beside the stage and as close as you could be.  The kids loved the show and spent the majority of the 90 minutes dancing, jumping and singing.  They put on a great show for the kids and adults.  Both Mom and Dad were surprisingly impressed with what they did.  Anthony came into the crowd and was only a foot away from the kids.  Murray (the red Wiggle) had to fly home to attend to a family emergency so they had a stand-in perform for him.  Ringo was really good, but he was much younger than Anthony and Jeff.


Saturday morning Dad and Ryley were off to spend the weekend at Kamp Kiwanis for Beaver camp.  It was a great weekend with lots of fun games and activities, investiture, a camp fire and lots of fun!  Both of us could have used a little more quality sleep, but that seems to be the way camps go with 22 5-7 year olds.  Mom and Karlee had a nice girls weekend without the boys around.  They even made it to church Sunday morning.


Sunday when we returned Karlee was a little flushed so we took her temperature and the result was a trip to the hospital.  She may have picked up Ryley's strep throat.  The doctor on call didn't want to keep her overnight as her counts were good (and had even improved since last week).  He gave her a dose of IV antibiotics and instructions to call the clinic in the morning and find out what time to come back tomorrow for the second dose.  Of course this trip to the ACH resulted in another disruption to our life.  Ryley was having his hockey pictures just after they left so we had to give Grandma a call for a ride.  Tonight was also Grandma's birthday dinner at Uncle Randy and Aunt Catherine's place.  Ryley and Dad went to the celebration and had a good meal and Ryley had a good time playing with the cousins.  This is the second birthday party at Randy and Catherine's that Karlee has missed due to hospital visits.  Hopefully this will start to calm down around March once Karlee moves into maintenance.

Flu Shot and Thanksgiving

Karlee once again had a great week.  She has been enjoying the warm weather and getting to play outside again.


Tuesday was Karlee's day off this week.  She didn't need to go to clinic this week as she got a short break between the end of consolidation and before the start of interim maintenance.  We were looking forward to a full week without having to go to the hospital, but it was not to be.  Tuesday morning we got a phone call about a special flu shot clinic that was being held at the clinic on Wednesday for patients and 1 parent.  Wednesday morning after their bus run Karlee and Mom headed to the Kids Cancer Care Foundation of Alberta office to pick up some Hitmen Hockey tickets.  She got to meet Mary the camp administrator and to see the nursing coordinator.  They then headed up to the Children's Hospital and got their flu shots very quickly and were back home around lunch time with no ill effects.


Thursday afternoon we had a visit from Mike, the KCCFA Director of Camp and Community, to talk about a presentation they would like us to give.  After having met us at camp and then having found Karlee's blog he thought it might be good to give the board of directors a chance to hear from a family about the journey they are going through and how the KCCFA and their programs have helped them through a difficult time.  We are excited to do this and to share our story with others.  We will be making a 20 to 30 minute presentation the morning of Friday October 22nd to the 15 board members and directors.

Friday night we went to the Hitmen hockey game with the tickets the KCCFA provided.  We ran into Russell Murray and Connor and RJ Hewlow at the game as they have season tickets close to where we were sitting.  The game was great fun for the kids.  They ate everything in sight, went over to see the players come out onto the ice, enjoyed the music and the game.  Farley the Fox was a constant entertainment throughout the game and even spent a little time in our section. Both the kids got a great big hug from the giant fox. We had our picture taken with the Ed Chynoweth Cup; the WHL championship trophy. I think the biggest thrill of the night was getting to ride standing up on the c-train on the way home. Karlee couldn't stay out of the lap of the guy sitting beside her and Ryley thought to would be great fun to climb to pole.

Saturday Dad was off the the Longview Thanksgiving Market to sell some slippers.  The market was very poorly attended and was really a waste of 5 hours time.  If it wasn't for some Hutterite chickens, pork and bread the day would have been a write off.  When Dad got back to Calgary we were off immediately to go Aunt Dorothy's for a Thanksgiving supper.  The food was excellent and the company was really good too.

Sunday morning started out with a trip to the South Calgary lab to get some blood work done for Karlee to ensure we could start treatment on Tuesday.  Karlee did really good, but ended up with a bruise due to the technician.  The had signs up in there stating the you too could become a lab technician in just 19 weeks; really doesn't inspire a lot of confidence.  We then made a quick trip to up the hill to go to church.  We were only about 15 minutes late which was pretty good since we had our appointment at the same time as church started.  We came home and spent a little time putting up our Halloween decorations, then it was off to Ryley's first hockey practice in High River.  The practice was a really good workout.  It was a full 75 minutes of skating in a very small arena that was really warm.  Not sure if it was harder on the kids or on the coaches (Dad in particular).  Right after hockey we drove to Grandma's for another turkey dinner.  Once again the food was excellent and the kids had a great time playing with the cousins.

Karlee's 4th Birthday

Karlee has had a really good week; she has been active and playing all the time.  It is like the old Karlee is back and we will take it when we can get it as we are sure there will to tough times ahead.


She recovered from all the fresh air and activity at camp with no ill effects.  In fact the activity, fresh air and good sleep probably did her some good.  Monday she had to make a quick trip up to the Children's Hospital to get a blood match done.  Due to the trend of her numbers Dr. Singh thought she would need blood as her hemoglobin was headed down.  Monday afternoon Dad called the nurse and found out that her numbers had recovered very well and she wouldn't need a transfusion.  So far we have made it through the first 2 months of this journey with only one transfusion which we feel is a huge victory for Karlee.


Tuesday was her regular clinic day.  Mom and Karlee were up there for 9am and everything went according to plan.  Karlee even managed a smile for Dr. Singh during the exam.  She was put under around 11:30 and she was on her way home just after 1pm with a new bottle of 6MP (Chemotherapy).  Karlee rode to get Ryley every day this week and has been playing with him after school.  Ryley is definitely enjoying having his play mate back.  Tuesday night was a Beaver night and Ryley again had a great time.  Dad spent most of the night outside trying to get all the money to balance prior to giving it to the treasurer.  Tuesday was also Popcorn Kickoff night.  Ryley is really pumped about selling $600 this year and getting a marshmallow crossbow.  If anyone is interested in buying some great popcorn, helping a great organization and assisting Ryley in reaching his goal please let us know.


Wednesday night Jennifer went to lifegroup and Dad stayed home with both kids.  We had a really good night watching TV and hanging out.  Thursday night was another hockey evaluation for Ryley.  They got to play a game for most of the ice time so the kids really enjoyed themselves.  Just 2 more evaluations and the teams should be set and we can start having real practices and games.

Friday was Karlee's birthday!  She had a great morning opening all her presents.  I think her favourite present was the finger nail polish and nail art.  Both Karlee and Ryley had to have their nails painted with the new colours this afternoon.  Ryley spent about an hour going around the neighbourhood and selling popcorn.  He is doing really good so far, but can always use more sales.  We took Karlee to McDonald's for supper and then to Okotoks to go swimming.  She had an incredibly high energy level tonight and we stayed for 2 hours.  She spent a lot of time swimming with the life jacket on since she can't wear the belt due to her port.  When we got home Karlee got to have her birthday cake that she had helped make and decorate this afternoon.  She enjoyed us singing to her and blowing out the candles.

Mom has been busy filling custom slipper orders.  For anyone who doesn't know Jennifer makes slippers and sells them at craft fairs and through custom orders.  Due to the impact that the Kids Cancer Care Foundation of Alberta has had in our lives she is now donating $5 per pair of slippers to this incredible charity.  If you would like to see her slippers please check out http://www.lewislinens.ca/slippers/ or http://www.facebook.com/slippersbyjennifer.

Family Camp - Incredible Experience

Friday afternoon was a gong show around the Lewis house.  We had to drop off the dog and her kennel at Grandma's house and pick up some soup from Sandra all while trying to get everything packed for camp.  In both the spring and the fall the Kids Cancer Care Foundation of Alberta offers a camp for the families of children affected by cancer.  About 5:30 we headed off to Camp Kindle just outside of Water Valley.  Karlee was asleep before we were 5 minutes out of the city and slept until we got to Cochrane.  After a quick stop there for drinks we were on the road again and got to camp just before 7:00pm.


Right when we arrived we felt welcomed by the staff and the volunteers.  They looked after us from the moment we arrived until we left.  We checked in and handed over all of Karlee's drugs and then were shown to our room.  We had 3 or 4 people helping us carry everything to the room.  If I had let them I wouldn't have had anything left to carry at all.  We were assigned a volunteer to assist us with any questions or concerns we had over the weekend.  Kevin was very helpful as were all the volunteers and staff.


We had a light supper followed by the pie contest.  While the parents were getting to know each other the kids were in the basement playing dress-up.  Karlee was a little tentative the first night to go get in the middle of everything with all the kids so Ryley stayed with her on the stairs.  We all then headed down the hill to the campfire.  The staff running the campfire did an incredible job with the songs.  Ryley was singing along and doing the actions that he remembered from summer camp.  Karlee really enjoyed the songs and was talking about them for most of the weekend.  After the campfire we got the kids settled and then went for parent time.  Ashley and Kevin looked after all the kids in the dorm and managed to get them all to settle down.  Parent time started out with everyone sitting around and getting to know each other a little.  Many families have been coming for years so they were just reconnecting with friends they have had for years.  They made 2 presentations to us about the KCCFA.  The first one was about their bike ride to raise money and how families of children with cancer could assist by volunteering and telling their stories.  The second presentation was about the future plans for the camp.  Both were very interesting and informative.  Most people (us included) headed to bed after this to get some sleep.


Saturday morning all the kids actually slept in until about 7:30.  We had 5 kids in our room and they were all between 7 and 2.5 years old.  Karlee had 2 little girls to play with and Ryley met Ty who was about a year younger than him.  I was very surprised when I heard the first one awake and it was that late.  Breakfast was great with lots of bacon, eggs, hashbrowns and cinnamon buns.  We then had a bunch of different activities we could partake in.  Karlee and Mom went and made a beautiful wreath and then headed over to the spa.  Karlee got her nails painted and Mom got a massage.  Dad and Ryley headed down to the giant swing.  It was an incredible rush when they drop you from 53 feet in the air.  At the peak of your first swing you are 75 feet in the air over the creek.  Ryley was white and looked ready to freak out during the first 2 back and forths.  Once he realized he wasn't going to fall off he loved it and was laughing and having a great time.  Next we all went to the arts and craft building to make some bracelets.  Mom made a hemp bracelet while Dad failed miserably at his attempt.  Ryley started a friendship bracelet and Karlee made a beaded necklace.


After lunch the kids went off to their activities and the parents went on a hike with the Camp Director up to the SunSeeker cabin.  This is where the older kids get to camp during the summer.  They have done a lot of work up there and the view is just incredible.  The best part of the hike was again talking to the other parents and finding out what they have been through and how they have dealt with it.  There is really no one else that can understand what it feels like to hear an oncologist tell you "Your child has cancer."  Everyone there can at least relate to those first 4 words.  I was looking forward to the activities, but wasn't sure about the connections we would make.  After the first few hours talking to these people I quickly realized that the other parents were the real reason we were there.  We met parents and children who were going through exactly what we were, that had gone through very different cancers and that had lost children to cancer.  We gained knowledge and strength from everyone and how they had handled everything.  We are hoping that some of the connections we made there will last for a long time and will be able to help us on our journey.  Of course at some point in the future it would be great for us to be able to help another family on their journey.


We spent a little time before supper making floating lanterns for the Harvest Moon Festival.  The kids loved doing the craft and knowing they would get to see their lanterns later that evening.  Supper on Saturday was a turkey dinner with all the trimmings served to us by the volunteers and staff.  The evening entertainment was DJ Fish (the official DJ of the Kids Cancer Care Foundation of Alberta) and a dance in a tent by the camp fire.  Everyone had a great time dancing and having fun with the kids.  Karlee had a great time dancing with Taelynn and Danika.  Taelynn is the same age and has the same type of Leukemia as Karlee and just entered the maintenance phase.  Even Ryley joined in with the girls on a number of songs.  He made sure to dance with both the girls and was a perfect little gentleman.  The kids had a great time and Mom and Dad even got to dance a couple of songs.  Saturday night, once the kids were in bed, was another chance for the parents to sit and relax and talk again.

Sunday morning was another great breakfast and then off to the morning activities.  We had a bunch of mini games to complete to earn prizes to decorate Dad up as a pumpkin.  Once we finished all the games we decorated Dad up and he completed in the Pumpkin Pageant.  The kids had a great time and Dad enjoyed looking funnier than normal.  After that Dad, a few extra kids and a volunteer went for a hike up to the low ropes course.  Karlee had earlier been complaining about her legs being tired, but she hiked up the side of the mountain without any issues.  After the hike it was lunch and then packing up to leave.


After we left the camp we headed up to Bergen for a visit with Frances and Roland at their Chalet.  It was nice to see them again and to sit on the porch out of the rain.  We were on our way home around 4 and after a quick supper at McDonald's in Cochrane we got home around 6.  It was a great weekend that both the kids and Mom and Dad really enjoyed.