Monday, June 20, 2011

Random Musings

School
On Friday we went in and met with the principal and the kindergarten team at Somerset School.  We had contacted the school to discuss some of the challenges and opportunities the teachers would have with Karlee next year.  We had also contacted our social worker and our primary care nurse to ask what we should be talking about.  The school did a great job working out a time that was convenient for us and would allow us to meet with all the people we would need to.

The principal and the teachers were both great; they listened to our concerns and discussed ways they ware already dealing with some of these issues.  We talked through all the concerns we had and all the concerns they had.  They were incredible and are willing to work with us and with the social worked and our primary nurse.  It sounds like we should have very little to worry about next year which is a huge relief to us.


Jamie’s Preschool
Tomorrow Liz Mackie is going to be featured in the Calgary Herald.  Mrs. Mackie is Karlee’s teacher this year and has been the teacher at Jamie’s Preschool for the past 19 years.  She has done so much for the kids and the families and it is great to see her getting the recognition that she deserves. 

Next year Jamie’s Preschool might be down to one full-time student, which is good and bad.  In one way it says that there aren’t as many kids who need a preschool for immune supressed kids, but more than likely it shows the word isn’t getting out.  If you know anyone who could benefit from Jamie’s preschool let me know and I can make sure you get in touch with the correct people.


KCCFA Summer Camps
This year the Kids Cancer Care Foundation is offering a free week at camp for kids whose parents have cancer.  It is exciting to think about these kids having the opportunity to get away for a week and forget about all the stress at home.  I think it is great that the KCCFA now has a camp where they can offer programs like this.  If you know someone who would benefit from this let me know and I will put you in touch with the correct people.


Head Shave for the KCCFA
As a way to give back to the KCCFA we would like to organize a head shave next June.  We are still in the very early stages of figuring out what we will do, but we have several people and kids who are willing to shave their heads.  I like to dream big, and I see a big party with bouncers for the kids, live music, bucket draws, auctions and lots of fun.  Of course somewhere in the middle of this there would be people getting their head shaves while raising money for the KCCFA.  We think this group offers the best balance between the different facets of cancer care.  They give money to research, clinical care, camp and community and scholarships.

We are looking for people who are willing to shave their head (and collect pledges) to raise money.  We are also going to be looking for donations of prizes and auction items as well as supplies (big bouncers, BBQ and food, etc) and finally volunteers to help with everything and anything.  We are hoping by starting early we can ensure we have lots of great stuff and fun activities.

I am even going to grow my hair for a year to raise money.  I know there are lots of people who would like to make fun of me in a skullette and to see what colour my hair comes in.

If you are interested in doing anything e-mail me at ronlewis@telusplanet.net.  Also if you would like to be added to our distribution list for next blog updates please drop me an e-mail!

Thursday, June 16, 2011

Calaway Park with Jamie’s Preschool

We have been trying to get to Calaway Park with Jamie’s Preschool since June 3rd, but have been rescheduled several times due to weather or other circumstances.  Finally on Monday we got an e-mail saying we are going Tuesday instead of Wednesday as the forecast on Wednesday wasn’t very good.  We quickly made some arrangements to switch vacation days and change days off and were ready to go.
 
Grandma joined us and we were out there at 10am.  There we a fair number of alumni there as well as 3 of the current 4 students.  Some of the older alumni was there to help out with the younger kids.  It is incredible to think that Jamie’s has been around for 26 years and Mrs. Mackie has been the teacher for 19 of those years!

Once everyone was there we went into the park and met “Awesome Austin” who would be taking us around to the rides.  It was strange being in the part with 20 or 30 other people and no one else.  Everything was closed until we got to the ride and then Austin turned it on, we went and he locked it up again.  We went on the cars the kids pretend to drive, the carts that go up and around, the little ship, the bouncy cars, the train and then the carousel.

After that there were enough helpers to look after the kids while all the parents got to go on the rollercoaster.  It was nice for all the parents to get to go on a ride too.

We went on a couple more rides and then headed over to the BBQ they had prepared for us.  They had some of the biggest hot dogs we had ever seen, veggie burgers, chips, juice, salads and ice cream for dessert.

When we were done eating we participated in Noah’s rebirthday ceremony.  June 3rd (our original Calaway Park day) was the anniversary of the day he received his new heart from an anonymous donor.  They release balloons with message of thanks to their donor and this year they invited everyone to take part.  We all wrote messages of thanks or of hope or just drew a picture and tied them to the balloons.  We then released all the balloons as a group and it was a very special ceremony.

We need to say a huge thank you to Calaway Park and Jamie’s Preschool for a fun filled day and an experience that the kids will not soon forget!

Tuesday, June 14, 2011

Clinic Day

It still seems strange only having clinic day once a month, but I think we are starting to get used to not being at the hospital all the time.  Monday June 6th Karlee went for a CBC (Complete Blood Count) at the South Calgary Lab.  They once again got one of the techs who wouldn’t listen so they got help in there to get the blood sample which of course wasn’t needed.  Karlee just sits down and flops her arm out and waits; she really is a dream patient for them.  We got the call Monday afternoon that her counts were all good and she was a “Go” for Tuesday.

Each phase of maintenance is broken into 3 – 4 week blocks.  The first block is a procedure day, but the start of the 2nd and 3rd block are just supposed to be quick in and out days for chemo.  Mom and Karlee don’t have to be at the hospital until 1pm which is a really nice change.  They saw Dr. Singh and he was happy with the way everything was going and then the waiting game started.  You have to see the doctor before they will order the chemotherapy.  Chemo can take a while to show up.  They were thrown in an isolation room because Karlee coughed once when they first walked in.  Isolation rooms aren’t much fun as there is no one to talk to and sometimes there isn’t a TV depending on the room you get.  Of course they were in a room with no TV and chemo didn’t get there until almost 4pm.

Mom had forgotten freezy cream so Karlee had to be really brave and get her port accessed with nothing to numb the pain.  It was kind of funny since the next day at school Karlee met the new teacher for next year.  Karlee told her all about Mom forgetting the cream and how very brave she had to be.  Mrs. Howe seems like a really nice person and that she will do a great job.  She does have a very, very big set of shoes to fill since Mrs. Mackie has been there for 19 years and is incredible with the kids and with the families.

Friday June 10th was kindergarten orientation day for Karlee.  She was excited to get to go to Ryley’s school.  She met both the kindergarten teachers for next year.  She liked them both and had fun playing at the various stations.  She did comment that the puzzles were too easy.  It sounds like she is going to enjoy herself.  We have set up a meeting for Friday the 17th with the principal and her teacher for next year.  We would like to give them a head’s up about Karlee’s leukemia and discuss some of the concerns we have about everything.  Or course one of the issues we are running into is we don’t know what we are supposed to be concerned about.  We have asked Jo, our primary nurse, and Laura, our social worker to give us a hand with what to talk about.  They have both given us some great information and have offered to come out to the school and talk to Karlee’s class at a level that is appropriate for them.  It is great that the school is willing to meet with us and that the health care workers are willing to do whatever we need.

National Cancer Survivor Day

A year ago I wasn’t even aware there was a National Cancer Survivor Day and now it is a very important day in our lives and in the lives of so many of our friends.  Survivor Day is the first Sunday in June every year.  The Kids Cancer Care Foundation put on a Country Carnival at Camp Kindle.






We arrived just before 11 and were greeted by some great volunteers and some of the staff.  We reconnected with a few of the families we have met at other events.  Ryley and Corbin seemed to bond a little more this time and enjoyed spending time together before the program started.  They served up a huge BBQ for all the volunteers and families.  This weekend was their training weekend for all the volunteers so there were over 100 volunteers there.  They cooked up burgers, hot dogs and even veggie burgers with chips and salad.

After everyone was fed the activities started.  Our kids took off to the 2 lane racing bouncer right away.  After a few races they were off again to the big blow up that had a bunch of different ball games on each side.  Ryley really got a kick out of almost hitting me in the head with a plastic baseball.  One of the volunteers had built a photo booth for this event so we all went in and got dressed up and pushed the button to get our 4 photos.

We then headed over to the petting zoo.  Petting zoos are technically off limits to Karlee, but we made sure she used lots of hand sanitizer.  They had puppies and kittens so the more typical petting zoo animals were partially ignored.  The puppies were adorable, but they are going to end up as big dogs.  They had 3 horses that the kids got to feed.  Both of them enjoyed giving them oat and grass and anything else.  The horses were very gentle and good with the kids.  They also had a baby chick, some baby ducks and roosters.
 
One of the mother’s of a young cancer survivor was there doing face painting.  She was incredible.  Ryley and Karlee both had dragons painted on their face.  Dad even got a Camp Kindle bug painted on the back on his head!  We played some mini golf, ate some ice cream and went on more bouncers.  Mom and Dad even got in one of the bouncer races.  It was quickly determined that bouncers are designed for smaller kids as it was a lot of work for a big person to get from one end to the other.
 
There were a couple of special guests there to talk about hope and the difference that bonding with people can make.  It was a nice story and showed some very inspirational moments.  If you get a chance to check it out take a look at http://wrongwaytohope.com/

Survivor Day was a great celebration of beating cancer and showing what is possible with the right support.  We had a great time and enjoyed all the staff, volunteers and other families there!

Monday, June 6, 2011

Heritage Park & Calaway Park

June 3rd was supposed to be the day that Jamie’s Preschool went to Calaway Park, but due to scheduling issues it has been postponed until Wednesday June 8th.  Since Dad already had the day off he decided to head to Heritage Park with Karlee.  We invited Grandma to come along and enjoy the day with us.  It was a nice morning and the weather was cooperating a little better.

When we first got there Karlee wanted to head straight to the midway and go on the rides.  We went on many of the rides when we first got there.  Karlee went on the little Ferris wheel by herself and loved it!  We then pried her away from the rides and went over to the wagon ride.  They did an excellent period tour of the park with both the guide and the driver playing their roles perfectly.  We then toured a couple of buildings and Karlee had a great time going through the trains.  She was running from train car to train car and pointing out everything inside them.  We had a quick lunch and went back to the midway.  Karlee wanted to go on every ride so we did them all, except the swings.  When we had finished on the caterpillar Karlee said she wanted to go on the swings.  I wasn’t sure she was tall enough, but she wanted to try.  We went over and they measured her and she just came in tall enough.  She had a great time!
 
We hit the ice cream shop and the bakery and then headed out.  As we were leaving the skies opened up and the rain started.  There was pouring rain, hail and everything in between as we did the long walk from the park to Gasoline Alley.  Thankfully when we got to Gasoline Alley we could get out of the rain.  Karlee looked at a few old cars and then found the tricycles and the road course.  She had a great time playing there.

Friday night Mom was doing a charter for her old school to Calaway Park so Dad decided to bring the kids and make it a night.  The drive up there was absolutely awful taking about 80 minutes to get to Canada Olympic Park and only getting above 30 once on Sarcee Trail.  We got out there around 5:30 and quickly hit the rides.  We went on a few before Mom showed up and then kept right on going.  Karlee & Ryley loved the log ride and most of the other rides.  Karlee is still too short for some of the rides while Ryley is now able to go on more and more of them.  We went on Free Falling (you go up in the air and then drop) and Karlee didn’t know what to make of it.  The attendant even asked us once at the bottom if she was ok and when we asked she said she was good.  When we got off the ride she said she loved it.
 
It was a great night and the kids enjoyed themselves.

Another Busy Weekend

This is another entry that is pretty late in finally getting posted.

On the Monday of the long weekend, after we got back from camp, we went to Heritage Park for a few hours.  It was very wet and many of the rides were closed due to the weather, but we still had fun.  We went on the ship, the train, the carousel and the whip.  We also went into a few buildings and toured around a little.  Fortunately Grandma got us passes for Christmas so we can go back as often as we like and not feel like we need to see everything each trip.

On Friday May 27th we went to the Spring Fling at Somerset School.  The parent council did an incredible job of putting on a fun event for the entire family.  They had a Goop Mr. Gosling booth where the kids got to throw a whip cream pie at the principal and assistant principal.  Both our kids managed to get a pretty good shot in.  Times sure have changed since when we were in school; the administrators are now fun guys who are friends with the kids.  This is great for the kids and they really enjoy them.  They also had a cake walk with a chance to win a cake or some candy and a bean bag toss.  They also had a great dance going on.  I’m not sure how much the kids danced, but they sure did run around a lot and played with the other students and siblings. 

Saturday was a bottle drive for the Scouts so Dad spent most of the morning there collecting bottles and chatting with the other parents and leaders.  It was a reasonably successful bottle drive, but most importantly we were done right around noon.  Saturday afternoon Karlee got her bike out and started riding again this year.  We tried to get her to learn without her training wheels.  She went over to the park and went down the hill without the training wheels.  We figured this would work since it was so successful with Ryley, but Karlee just didn’t get it and we quickly realized she wasn’t ready yet.  We did move her up to the bigger bike, but left the training wheels on.  It looks like she is going to want to ride everywhere this summer.

Saturday night we went to Freemason Hall to see the Stampede Chapter of the DeMolay’s installation.  One of Dad’s lodge brother’s son was going in as Master Councillor of the Chapter so we were there to support him.  Each term the Master gets to choose a charity to support during their term.  During the installation they do a silver drill where they collect coins to donate to the charity.  This year due to everything Karlee has been through and the way cancer touched their family Caleb decided to support the Kids Cancer Care Foundation.  Ryley was very interested in the ceremony and Karlee was very interested in the tiaras that the Job’s Daughters were wearing.  As a surprise to Mom and the kids they also called us up for a presentation of a $5,000 cheque for the KCCFA.  Dad said a few words about the KCCFA, the support they have offered us and the difference they are making in so many lives.  It was a very fun event and they ended up donating almost $5,100 to the Kids Cancer Care Foundation.

After the installation we dropped the kids off at Grandma’s and went to the Scout’s year end leader party.  Travis had his guitar, amp and mike out and was playing some great music.  Dad tried his hand at the bass and showed how long it has been since he last played.  It was a great time and we had fun.  Rumour has it the Dad had a little too much to drink, but he doesn’t remember that happening.  In fact he doesn’t remember a whole lot of that night…

Sunday night the Scouts had their early registration and the final committee meeting before the summer.  It was a mildly successful registration followed by a pretty good meeting.  Next year should be another great year, this time with both kids in Scouts.  Karlee will be starting Beavers and Ryley will be moving up to Cubs.

Family Camp

Note: This blog was started just after family camp, but took a little longer to complete than planned.  Family camp was the weekend of May 20th – 22nd.

We were all very excited on Friday to head to Camp Kindle for the Kids Cancer Care Foundation’s Family Camp weekend.  We didn’t get a lot of information about what was going on this weekend, except it was a Wild West theme, and we knew there would be a lot of great families out there.  The last family camp was an incredible opportunity for the kids to enjoy camp and for us to make some great connections and get the support we didn’t know we needed.



We left for camp earlier than we planned.  That was a bit of a shock to us as we are almost always running late when we try to load up the car and the kids.  We stopped for supper in Cochrane and made it to camp just before 7pm.  We were greeted by some of the Calgary KCCFA staff and some of the great volunteers.  They quickly got us settled into the new dorm and we found out that Blair was going to be looking after us this weekend.  Blair was Ryley’s counsellor last summer at camp and is a cancer survivor himself.  He was great all weekend making sure we were looked after and that the kids had a great time.

Shortly everyone started showing up including the bus from Edmonton.  It was great seeing and reconnecting with all the friends we had met at the last camp, at other events and at Jamie’s Preschool.  There were also a few staff members from Calgary there as well as all the camp staff and the volunteers.  We had a light snack and then went down to the field to play some soccer and other games as we couldn’t have a fire due to the fire ban.  All of us had a great time running around and having fun.  Once we thought we had tired the kids out we put them to bed with the volunteers looking after them and we went to adult time.  We had a great time learning stuff about the other parents (and grandparents) at camp.  It was interesting to hear some of the fact about the other people that had nothing to do with cancer.  Found out there is another Dad there who is a Group Commissioner for scouts, coaches soccer and used to work for HP… it was a little creepy.  When we went to bed the kids were asleep, but we found out the next day that they just beat us to sleep.  They were up until midnight playing and talking.

Saturday morning at breakfast they set up the theme of the weekend.  The evil mayor had been taking everything from the townsfolk including teddy bears and blankets for years.  The cowboy was going to help us all train to rob the bank and take everything back that was rightfully ours.  We had all day to work through a number of stations to learn skills and collect items to assist us.  Ryley wanted to start at archery so we headed down the hill to the archery range and waited while they set up.  Ryley was one of the first few kids and did pretty good.  He was getting the range, but not the aim yet.  We then headed over the the team pull and the Flying Squirrel.  Karlee was in front of Ryley in line and was hooked into the harness and ready to go.  The Flying Squirrel is a pretty gentle ride, but a lot of fun for the kids.  They have a harness on and are hooked up to a rope going up to a pulley attached to a cable suspended between 2 poles about 25 feet up.  The kids run towards the pullers as they pull the rope.  The kids end up soaring up 25 feet and swinging back and forth.  We were a little worried about Karlee and if she would enjoy it, but she loved flying as did Ryley.  We then went over to the climbing wall and Mom made it all the way up.  This was her first time climbing so it was pretty exciting.  Both Dad and Ryley also had a quick climb too.
 
After lunch we headed up the hill to get the gold out of the snake pit and to make some snake oil tonic.  The snake oil tonic was fun.  There were 3 ropes attached about 20 feet up a tree attached to a central point.  We each got on a rope and pulled to get a cup into 3 buckets placed on poles of different heights in the middle.  It was great fun and required us to work together.  We then went down to the old time photo studio and had some pictures taken in western garb.  Finally we went to the theatre and played charades.  Ryley loved acting stuff out and guessing and thankfully there were some great volunteers to help Karlee.  We then headed back to the archery and flying squirrel as the kids wanted to go again.
 
Afterwards we returned to the main camp and helped “rob” the bank.  The kids loved chasing the volunteers around and finding the gold.  After supper the kids went to their specific activities and the adults went down to try the high ropes course.  Mom did a great job getting up 25 feet in the air and walking around all the obstacles.  She was a trooper stepping outside her comfort zone and having a great time trying something new.  Dad did a great job climbing up to the top and hanging onto the pole unable to move any further.  On the plus side he did get some good pictures from up there.
 
Once the kids were in bed another great night was had bonding with all the parents.  The next morning was a chance to share some of the great memories that we had made this weekend during the Magical Moments.  Some of the parents, volunteers and staff got pretty emotional during this, but it was a great time to share with everyone.  They also presented the new Family Camp beads to the kids for the beaded journey.