Last Treatment of Interim Maintenance

Today was a pretty important day in Karlee’s treatment, but before we get to that we should let you know what else has been happening.

It was a pretty quiet week around here.  Karlee can’t go to preschool until April due to her exposure to chicken pox.  We found out today that she is quarantined for 21 days after getting the shot to prevent the chicken pox from being too severe.  She has also been fighting a cold and using Kleenex like it is going out of style.  She seems to be starting to feel better now and if definitely coughing and sneezing less.

Friday afternoon we dropped Karlee off at Grandma’s and took Ryley to see a movie.  We went to the cheap theatre and saw Narnia: The Voyage of the Dawn Treader.  Ryley loved the movie and he seems to really like to get to spend a little time alone with Mom and Dad.  It is really nice to go to see a movie and get food for 3 for under $25.

Saturday morning we headed to the zoo as a family for the first time in a year.  Last summer was a little bit of a mess with Karlee having her episodes and the being diagnosed so we didn’t make it there a all, and then we didn’t get around to renewing the passes over the winter.  Karlee had been dying to go back to the zoo since sometime around October and has been bugging us fairly regularly.  We did get there for Zoo Lights at Christmas, but that isn’t the same as you don’t get to see the animals.  We were there about 9:20, but it took a while to get our new passes.  We met Uncle Randy and Cousins Everett and Oliver and the 4 of them had a great time running from exhibit to exhibit.  We saw almost everything except the Canadian Wilds before Uncle Randy and the boys left.  Once we say them to the exit we headed over the see the elephants where they were also doing face painting.  Ryley ended up being a tiger and Karlee got flowers all over her face.  They also had a great interpretative area with people able to answer questions about tigers and let them touch skins, skulls and teeth.  After lunch we headed home.

Sunday morning Dad took the kids to the wave pool for a swim.  They both had a great time and got some exercise.  Karlee is getting much more independent in the pool, but she still wears a life jacket.  Hopefully she will lose that soon and start to swim on her own.
 
Monday (today) was clinic day again.  It was the last day of treatment for the interim maintenance phase of treatment.  Technically this phase isn’t over until April 11th, but all that is left is a few CBCs (Complete Blood Count) at the local lab.  Starting April 12th she will be in the maintenance phase.  Today they were stuck in an isolation room, but thankfully it was a short day and they were done just after 11:30.  Dr. Singh is back, but it looked like he was on the unit today instead of being in the clinic.  We got a little more information on what to expect in the maintenance phase.  Karlee will not get a bed unless she is having a procedure, but the visits should be shorter.  We will do the CBC the day before and the visit should only involve being accessed, seeing the doctor, getting some chemo and then going home.  Basically it is everything we do now, just with the blood work done the day before and hopefully everything moving a little quicker.
 
This past week both Mom and Dad read the book Letters To God.  The book was a great story about faith and the journey through cancer.  It was an incredible book that we would encourage everyone to read.  We also watched the movie, and while it was a good movie, it was not as moving as the book.  If you want to borrow the book or the movie let us know and we will get it to you.

Clinic Day in Isolation and A Busy Weekend

Thursday was a regular clinic day with an added little twist; since Karlee was potentially exposed to chicken pox on March 6th they have flagged her as needing to be in isolation until any chance of her getting them has passed.  This means that they are stuck in a small room by themselves for the entire visit.  It also means that when Karlee needs to go to have her procedure she needs to wear a mask and travel in her bed the long way around to the procedure room.

This week Mom and Karlee got to see Dr. Struther.  He seems to be Karlee’s favourite and one of very few she will talk to.  He commented that he saw us at the KCCFA Quest for the Cure Gala and then spent some time admiring Karlee’s beaded journey.  Everything is going well according to him and he didn’t seem to think Karlee was going to get the chicken pox now.  He did give us a prescription for a bigger jug of ondansetron (the anti-nausea medication) and gave us a bunch of refills.  This is nice as asking for  a prescription each visit seems to be a hard thing to remember and we have issues whenever Walmart tries to make it up. 

Karlee got to go last for her procedure because she was on isolation.  If there is no one on isolation they go with the youngest first.  That can be kind of scary when they tell you that and Karlee is still near the end of the line.  Some days there are a lot of very young kids in their fighting cancer and living their own journey’s.  Thankfully they started almost an hour early so she wasn’t too late.  This time they had to let her wake up in the procedure room since she couldn’t be out with the other kids.  It took a while for her to wake up, but that isn’t too unusual.  They were back in the isolation room just before 1, but had to wait for the chemotherapy.  By the time if finally showed up and they got everything into her it was just after 2:30 so they weren’t home until after 3:30.  Clinic days have become fairly routine, but sitting around doing nothing seems to be very draining and leaves you feeling exhausted and wiped out.

Friday night we took the kids swimming in Okotoks.  We were not sure Karlee was going to be up to it, but once we got there she had a great time and really enjoyed herself.  Saturday morning it was obvious that Karlee was coming down with her first cold since starting treatment.  She has spent most of the weekend sneezing and with a runny nose.  She seems to be hanging in there pretty good, but definitely has a few more cranky moments than normal.

Saturday morning we also had an appointment for Mom and Ryley to give blood.  Ryley has been sick a lot this year and the doctor wants to rule out anything in the blood and Mom was getting blood work for her yearly physical.  Ryley did a great job this time; there was no fussing before hand and one little yell when the needle went in and then he was fine.  They took 5 vials of blood and a pee sample from him.  I guess they want to rule out everything.  Saturday afternoon we went to  Christian’s birthday party at the Deerfoot Inn and Casino.  It is amazing what a few hockey and soccer teams can do to a normally quiet pool.  We still managed to have a great time with all the kids and didn’t lose anyone.  Birthday parties there are always fun!

Right after the party we took off for Drumheller and the Royal Tyrrell Museum for a sleepover with the Beavers.  It was a quick drive as we had to be there by 7:00pm.  We managed to make it there with 2 minutes to spare and still beat a lot of other people.  The plan was similar to the last time we were there.  We dropped our gear, but didn’t set up, and then headed off to 4 different activities.  Our first activity was making plaster casts of fossils.  Ryley enjoyed this one the most.  Next we picked through the extra goodies they get from dig sites and found fossils, petrified wood and shells.  This was very interesting and the kids enjoyed finding the different types of items.  Our 3rd activity was Dad’s favourite; we got to learn about and hold Brittany,  a 6 foot long boa constrictor.  Brittany was there 2 years ago and is still a big favourite.  This year Ryley wanted to hold her in his arms to feel how heavy she was and Dad still put her around his neck.  Our last activity was a trip into the museum to look at some fossils and talk about dinosaurs and everything about  them.  We then had snack and headed to bed.  We got to sleep in the main exhibit hall with all the dinos.  We all could have used more sleep, but it wasn’t too bad.  Sunday morning we had a good breakfast, watched a few movies and then wandered the museum.

Saturday night was also the windup party for Ryley’s hockey team.  Mom and Karlee went and had a great time.  It was a potluck at the barn this year and it sounds like it was a great time.  Coach Joe got Karlee a trophy for “The little girl with a lot of heart.”  Karlee was so excited to get a trophy and had fun at the party.

Sunday afternoon was the final game of the year for the team.  They played a team of pyjama clad, oven mitt wearing Mothers with Barney in net.  The kids had a great time playing the Moms and the Moms did an incredible job out there.  Ryley’s Mom had never played hockey before, but gave it a great effort and did really good.  It was a good thing there was boards for her to stop against or she might still be going.  Coach Joe put on the Barney outfit after stressing to the kids that we didn’t want any big slow moving dinosaurs on the team all year.  This was definitely the best way to end the year with an incredible group of parents and kids.  Hopefully we will run into a lot of them again in hockey or soccer in the years to come.  After the game Coach Joe presented Ryley and Dad with their trophies for the year.  Ryley “The Hitman” Lewis got a trophy saying, “This kids is amazing, he baffles the other team with his amazing skills.  Truly the best Canada has to offer.”
 
We are going to miss the hockey season and everyone associated with it, but it will be nice to get some of our time back again.  Coach Joe really is incredible and does a great job with all the kids.  We also had a great pair of managers, Lee and Connie, and excellent assistant coaches.  Add to that good kids and excellent parents and you have a hockey season that all others will be compared to.


As always if anyone would like to be added to the distribution list when we add a new entry let me know at ronlewis@telusplanet.net.

Hockey, Clinic Day, Hockey and a KCCFA Gala

I can’t believe it has been almost 2 weeks since the last blog.  I guess that goes to show everyone how busy we have been, but at least now it was a good busy and not a busy spent at the hospital.
 
The weekend of the 5th and 6th Ryley was in a hockey tournament up at Crowchild Twin Arenas.  We started off with a Saturday morning game which was a great battle with us losing 1-0 due to an incredible goalie on the other team.  After the first game we went out for a team lunch and everyone had a great time.  The kids all got along and hopefully did a little more bonding as a team.  We had another game in the afternoon which we won.  Saturday night the parents decided to go out for a few drinks and a great time was had by all.

Sunday morning we had an extra league game added to our schedule.  Ryley got to play goal for this game so he was very excited to get to up early for the game.  When we got to the arena there was a mix up with the schedule and the times.  Four teams showed up and the first 2 to get ready were the ones that got to play.  Fortunately one of them was us… unfortunately the other team was a division 3 team (3 divisions higher than us).  Our team played an incredible game of hockey and Ryley made a lot of good saves.  We did end up losing the game, but we were very impressed with the effort our team put out.  It was incredible to see that we were losing 18-0 to division 5 teams and we were able to hold a division 3 team to 8-0 by the end of the year.

Sunday afternoon we had another tournament game up at Crowchild.  It was an epic battle and with 2 minutes left we were down by 2 goals and short handed.  We managed to get one being a man down and then tied the game with under a minute left.  We held on for the tie and the players, the bench and our fans all went crazy.  It really showed that the kids had understood some of what we had been teaching them about not giving up and doing their best.

Monday was a clinic day for Karlee.  It was a pretty typical clinic day and they were out of there around 1:30.

Tuesday night we had the consolation  final of the Crowchild Tournament at 5:15.  It was a rush to get up there, but we had a great game and won.  The players all got a great trophy and enjoyed the tournament.

Wednesday night we received an e-mail from a team member letting us know that one of their kids had come down the the chicken pox.  They thought he had probably started coming down with them on Sunday when he was around Karlee.  Chicken pox in most kids are very minor and rarely cause any issues, unfortunately chicken pox in kids with a weakened immune system can have very serious complications.  Thursday morning Dad called JoJo and let her know what had happened.  After a few back and forth phone calls it was determined that Karlee needed to come in ASAP for a VZIG (varicella zoster immune globulin) shot.  This injection is given into the large muscle in the leg and is supposed to help minimize the effects if she is to come down with them.  It was supposed to be a quick in and out procedure, but it took a long time to get the injection.  It had to be ordered from the blood bank and took over 2 hours to get there.  Once Karlee got the shot she needed to stay for another hour to be observed to ensure she didn’t have a reaction.  Karlee was very upset after the shot because she cried.  She likes to keep proving to everyone how tough she is and finds it upsetting when she isn’t.  Mom and the nurse both had to reassure her that she is tough and there are some things that are going to hurt and it is ok to cry.  Now we are just hoping that her vaccinations worked and that she doesn’t come down with them.

The next weekend brought another hockey tournament; this time it was our own I Am Novice Tournament.  Saturday morning we had a great game and ended up with a tie.  Saturday afternoon Ryley was in goal again.  This game was a little boring for him and he didn’t end up playing well at all.  He seemed bored and wasn’t into the game at all.  Unfortunately every shot they got on him went in.  Thankfully the rest of the team had a great game and we still managed to win.

Saturday night was the KCCFA Quest of the Cure Gala at the Westin.  We had been given tickets by another family whose daughter had also battled and beaten cancer.  Having never been to anything like this it was an incredible experience.  The theme of the night was “the everyday superhero”.  They had a bunch of survivors and kids battling cancer greeting everyone at the door and thanking everyone for coming.  There were also a lot of the volunteers and staff members from the KCCFA there helping with everything that needed to be done.  The table we were at was sponsored by Savanna Energy and was all people who’s life had been touched by childhood cancer.  It was great and therapeutic to hear about everyone’s journey through this awful disease.  One of the couples at the table had lost their son at 18 months to infant leukemia.  It was very interesting to hear about their journey and how quickly things can go wrong.  It was also encouraging to see how strong they were to make it through the experience.

The Gala was incredible; it started with valet parking.  The valet looked at us a little strange when we showed up with a Focus, but they did park it.  The gala started with a champagne reception.  It was almost like you see on TV with people walking around with trays of champagne and wine and other people walking around with the trays of appetizers.  Ian White (from CFCN) was there in his tux as the MC for the night.  We met Corbin’s parents from camp and had a nice chat with them about Corbin and how incredible camp has been for him.  Someone from Avenue magazine was there and took our picture for the magazine.  If anyone sees this could they please let us know.  The formal program for the night was great with lots of entertainment and lots of speakers.  Rose and Savanna spoke about Savanna’s journey with cancer.  It was an incredible story and Rose can tell a story as well as anyone.  They played the 2011 video for the KCCFA.  When the video was over I don’t think there was a dry eye at our table as we knew how much the KCCFA meant to everyone.  You can see the video here: http://www.youtube.com/watch?v=sIZzw6ofBvI.  After the formal program they had dancing, which was nice to do again.

Sunday we had 2 more hockey games.  Ryley had an awful game in the morning and his best game of the year in the afternoon.  We won both games and the kids had 2 good games.  It was a great way to end the year!

Lightning Bolts Skate-A-Thon

This is a hard blog to write because of all the emotion involved in this weekend and all the support that was shown for our family.

Friday night we all went over to Lee and Connie’s and helped get all the bucket draw prizes together, wrapped up and labeled.  It was incredible to see all the great prizes  that had been donated.  We had a really nice evening and for the most part the kids played together well.

Sunday morning we got a phone call from Lee just a little after 10am telling us that Global TV wanted to come down to the arena at noon to do a story on the Skate-A-Thon and Karlee.  We very quickly got ourselves organized and headed down to the rink.  It was a whirlwind of getting everything setup and ready for the big event.  Lee and Connie were absolutely incredible organizing everything and making sure everything went off without a hitch.  Lee had sent out an e-mail to get everyone down there for noon so we could have video of all the kids for Global.

Global was there a little after noon and did an interview with Mom and then got some footage of the team skating around the ice and Dad carrying Karlee around the ice.  Here is a link to the Global story... not sure how long it will be up there but... http://www.globaltvcalgary.com/video/index.html?releasePID=MR1SvGkPVgHnQXYUd_d4cig9pkTVJI_C.  Karlee really enjoyed going for a ride and getting to skate fast.  They then did a short interview with Dad.  Most of the team then got a break and went home, went to get lunch or headed down to the library.  A few of us stayed and sold tickets on the bucket draws and chatted with people.  The people were all great to talk to and were all interested in hearing about Karlee’s journey.  We had one boy about 7 or 8 go home and come back with his piggy bank and donate everything he had.  His only requirement was that he be given back his piggy bank.  It was a really touching experience to see how Karlee can touch other kids.


Everything got crazy about 3 with lots and lots of people showing up and then the special surprise guest arrived.  Harvey the Hound came in, in a whirlwind.  He went straight to Karlee and gave her a huge hug.  Karlee took to Harvey and had a great experience.  Harvey gave her a Heritage Classic jersey and an autographed stuffy of Harvey.  He couldn’t hug Karlee enough and then gave Dad a huge hug.  When Harvey hugs you at an event like this you can tell that Harvey is emotionally attached.  It definitely wasn’t the hug of a mascot out to have some fun, but of a very special dog who was there to make our families day special!  Mom got a couple of big hugs too and then we took a bunch of pictures with Harvey and the team.  Harvey and Karlee made a special connection.  Later that night Karlee said, “Mascots are like stuffies that move.”

Just before Harvey’s arrival the Herald showed up with a photographer and CTV also showed up with a camera.  Mom got to do another interview and Dad took Karlee out on the ice to skate around.  It was incredible to see the number of people there.  Ryley’s entire hockey team was all there, there were members of a bunch of other teams from Shaw Meadows and Midnapore (even some players coach Joe previously coached), there were friends & family, scouts, church members, people I haven’t seen since high school and a ton of other people.  Hockey Calgary was there handing out hats to everyone, Tucker Hockey showed up and made a big donation and there was even a friend of ours who made a donation on behalf of his Novice team in Crowchild.  At one point there was over 100 people on the ice, the stands were full and the lobby was packed.  It was very humbling to see the number of people who came out to see us.

It took a while to get Karlee out on the ice as everyone wanted to get a picture of us with the KCCFA staff, Hockey Calgary people, Coach Joe and Lee and Connie.  Once Karlee got on the ice she had a great time skating around the rink.  She enjoyed being out there with her brother and her cousins.  It was great chatting with all the people on the ice.  One player on another novice team came up to Karlee and said, “I’m sorry you got cancer and I hope you get better.”  That was a pretty moving moment for me.  It really summed up what lots of players on her team had been saying for a couple of months to Karlee.  There is something very special hearing kids offer their support.
 
After we skated we did a huge team picture on the stairs with the kids at the bottom and all the parents standing above.  It is a great picture and shows an incredible group of parents and kids who went way above the call of duty.

Ryley and Dad stuck around while they drew some of the bucket draws, but we had to run off to the Flames game with some members of the team.  Lee drove us down to the Saddledome and we headed up to our seats in the 300 Level (the nosebleed section).  We had great seats in the first row with Lee and the boys a row above us and other members of the team way above us.  Mike walked up and told us these were pretty good seats and then told us there was a suite that wasn’t sold and asked us if we were interested in moving.  Before he had finished asking we were all on the move.  It was an upper level suite, but it was incredible.  All the members of the team who were there were able to hang out together in the suite and watch a great hockey game.  As Lee said, “It was a perfect ending to a perfect day!”

There are so many people to thank for the Skate-A-Thon, but I will give it a try.  If I forget anyone please do not feel slighted as it was not intentional and I know there was a ton of people helping out everywhere.  The first huge thank you needs to go to Coach Joe for coming up with the idea and contacting the KCCFA.  Lee and Connie did an incredible job of organizing everything and making sure it all went off without a hitch.  Dragan did a beautiful job with the poster and the sponsor list.  We are looking into getting the poster laminated and putting it up on the wall.  Leona & Cindy from the team and Tanya did a great job of selling tickets and working behind the counter.  Mike did a great job talking to Harvey and arranging to have that great dog show up.  All the members of the team were incredible helping where was needed and getting the great donations for the bucket draws.  Finally and most importantly we want to thank all our friends and family who showed up to the event and made it so special for Karlee and our family.  As Dad said in one of the interviews, “The support is there when you need it!”