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!”
Sunday morning we had an early morning hockey practice at Erin Woods. After the practice the entire team decided to go out for breakfast. It was nice to go out with everyone and enjoy a nice breakfast with the team. The kids both had a good time with all the players. After breakfast we went swimming at the Southland Leisure Centre. It had been a long time since she had been allowed to go out to somewhere like a pool. She had a great time playing in the waves and going down the slides.
Sunday afternoon Ryley and Dad headed to the Heritage Classic. For anyone who doesn’t know the Heritage Classic was the outdoor hockey game between the Calgary Flames and the Montreal Canadians in front of 41,000 people at McMahon Stadium. We had special seats through Hockey Calgary with a limited view on the ice. We were in row 4 which was too low to be able to see most of the ice surface. The opening ceremonies with incredible; Paul Brandt sang the national anthem, the Snowbirds did a flyover and there were lots of fireworks and flames. The game was very cold and the crowds in the concourse were insane. You could not move and everyone was pushing and shoving. The lines for the washroom and food were incredibly long and slow. We made it through one and a half periods and then decided that we should go home and get warm. Overall it was a great experience and Ryley enjoyed the atmosphere and the fun; best of all the Flames played a great game, Kipper got a shutout and Montreal lost!
Monday was family day in Alberta and another outdoor game. We got better tickets to the WHL Outdoor Game. It was a lot warmer and the game started much earlier so it was warmer. The seats were on a very cold metal bench, but we had lots of warm stuff to sit on so it wasn’t too bad. We got to see a friend’s son do the pregame skate with the Hitmen and then enjoyed a couple of periods of hockey. Once again everyone started to get cold so we all headed home.
Karlee went to preschool both Tuesday and Wednesday and is starting to fall into a routine. She was at the front door on Tuesday dressed and ready to leave 30 minutes early. She is having a great time doing crafts and learning music. Hopefully we don’t have too many clinic days that interfere with her preschool days.
Thursday was clinic day and this time it was Dad’s turn to head up. Clinic day was really smooth and we left the hospital around 1pm. Mom didn’t tell Dad how much fun clinic day is now. The nurses were all having a great time joking around, we played a little DS, did a craft and watched some TV. Karlee and Dad both had fun and we got all the drugs and fluid into her without issue. Once again today reminded me of how lucky we are. There was a little girl just younger than Karlee. It took about 10 minutes of her yelling and screaming just to get her accessed. Karlee just sits there and talks to the nurses while they access her.
Thursday night we went to the final Skate-A-Thon meeting. We went through all the prizes for the bucket draws and got a few things finalized. We are going to have some great prizes packages. Now we need to makes sure we get lots of people out to support the event. If you have any questions about the Skate-A-Thon let me know at ronlewis@telusplanet.net.
Thursday was a quick day at the hospital… well as quick as can be expected. We left home and dropped Ryley off at school after lunch, made a quick stop and then headed up to the hospital. Parking was a little better Thursday, but the telethon was still going on so there wasn’t much to pick from. After a couple of loops around the lower level we managed to find a spot and were in the clinic on time for our 2pm appointment. We played a little Mario on the DS and chatted with another family in there and were in the back about 2:25 or so. They didn’t feel she needed to be assessed so they just deaccessed her and sent us on our way home. It was a nurse we had never had before, but like the trooper she is Karlee had no problems and the nurse was great like all the nurses in the clinic and on the unit.
On the way home we stopped by the KCCFA office to drop off some scrubbies and pick up some slipper money. Everyone was great there and was excited to see Karlee without her hair. They were excited about the upcoming skate-a-thon for Karlee and the KCCFA. We had a really nice visit, but unfortunately Mary was out of the office that day sick. Jennifer will have to stop in again to say “Hi!” to Mary after another clinic day.
Friday night was the unparented Beaver sleepover. We had 36 Beavers for pizza, crafts,a movie, sleepover and breakfast. Most of the parents were a little nervous about leaving their 5 to 7 year olds overnight, but overall the night went excellent and I think everyone had a wonderful time. I know Ryley enjoyed himself and I did my best to leave him alone so he would get the benefit of not having a parent hovering over him all the time.
Saturday morning the story about the Skate-A-Thon ran in the Calgary Herald so we had to stop on the way home from the sleepover to pick up a couple papers. Here is a link to the story: http://www.calgaryherald.com/health/Girl+cancer+fight+inspires+Lightning+Bolts+skate+thon/4270962/story.html. Ryley’s hockey team really is an incredible group of kids and parents. I have heard from a number of different people who will be skating and some other teams who are handing out pledge forms to their teams. We are really looking forward to this event and enjoying the support from all our friends and other people we do not know.
Saturday evening we dropped the kids off at Grandma’s and headed to Jennifer’s cousin Danny’s 30th birthday party. It was a great time and was a special night for Danny and his girlfriend Eva. They announced that they were engaged and would be getting married this summer. It sounds like they are going to have a wedding in Indonesia and another one in Calgary when they return.
Sunday morning we went to Church for the first time since before Christmas. Karlee was finally feeling up to going out and Ryley didn’t have hockey. It was nice to see everyone again and catch up with some people. Hopefully after hockey season we will be able to get to a normal schedule. Sunday evening we went to Grandma’s for dinner with the family. It was nice to finally see everyone there again as we have had to miss the last 3 weeks due to hockey or sickness.
Sunday evening we called about getting Karlee into Jamie’s Preschool for kids with cancer and other supressed immune systems. Mom had a nice 30 minute chat with Liz from the preschool and it sounds like this may be a great fit for Karlee. We are thinking of starting her on Wednesday so she has a day to recover after Monday treatment. Karlee would go 3 days a week – Tuesday – Thursday from 12:15 to 2:45. It sounds like they offer an excellent program with lots of diversity. Wednesday’s are music day and Thursdays they start out at the Gymtastics location and then go back to the school. Tomorrow Mom is going to talk to Karlee and make sure this is something she wants to do and they we will see what happens.
The last blog I forgot to give everyone an update on Ryley. He got his first hockey goal of the year on Sunday night. Of course this was the first game that Dad missed this year as he was attending a Scout meeting and Mom was taking Karlee to the bathroom. He seems to have forgiven us and is still revelling in his first goal.
Tuesday we got an e-mail from Jo asking us to bring Karlee in on Friday to see where her numbers are and to, hopefully, continue treatment. We asked if we could bring her to the lab on Thursday and get her CBC done and come to the hospital on Friday only if she is able to start treatment. Since Karlee needs to have a lumbar puncture (and needs to be put under) we don’t want her to fast until they decide if she can start treatment.
So it looks like Thursday is now on hold as Karlee was up at the clinic today for a CBC and some IV antibiotics. Tuesday night Karlee was up just before midnight vomiting and complaining about her tummy not feeling good. She wasn’t up for too long, but didn’t have the best nights sleep. She was up a couple of times and just didn’t seem to be comfortable most of the night. Wednesday morning she stayed home with Dad since Mom was doing the bus run and then was going into Ryley’s school for home reading. She was a little warm most of the morning and a couple of times was running a fever. We called Jo around noon and finally go through to her about 1. We were instructed to bring her up just to get everything checked out and make sure she was ok.
While Mom was talking to Jo we were also talking to a reporter with the Calgary Herald. They want to do a story about the Skate-A-Thon for Karlee and the KCCFA. Dad spent about 30 minutes talking to the reporter on the phone and gave her some other people to talk to and sent her a few photos of the team and Karlee. The Skate-A-Thon is looking to be a huge success and will be a fun time for everyone. There is still room for more skaters so if anyone is interested let me know and I will put you in contact with the correct people. We are also still looking for prizes for both kids and adults. Again if you can help with that drop me an e-mail at ronlewis@telusplanet.net. Ryley is still looking for pledges so it you are interested you can drop of cash or cheques to us or give us a call and we can pick them up. It is sounding like there are going to be some great door prizes or bucket draws so hopefully lots of people can come out on February 27th at 3:15 –4:15 at the South Calgary Rec Centre.
Karlee and Mom were up at the hospital on the unit this afternoon and got her CBC and some IV antibiotics. Her counts are looking better, but are starting to get too high which can mean other things. We have seen her counts spike before and they have gone down again rapidly so hopefully this is another short abnormality. The unit is on lock down right now due to some of the stuff that is going around. That means that only one parent is allowed in and everyone has to stay in their rooms. Fortunately they were out of the unit just after pizza time and didn’t have to deal with the restrictions for too long. Ryley had a great workout tonight at Skillz with his hockey team.
After the last blog entry with all the links and other interesting information I was given more information about another great cycling fund raiser this summer. The KCCFA has their own tour which is one of very few allowed on the Icefield highway. This tour is also stopping at Camp Kindle this summer for one of the nights of camping. This is a great event with 100% of the money raised going to the KCCFA. Check out www.tourforkids.ca for more information.
Tomorrow Dad is going to take Karlee up for an assessment and maybe another dose of IV antibiotics. They should also let us know if we are going to start treatment on Friday or Tuesday. Hopefully we have a nice quick day tomorrow and are home in lots of time for Mom to go to Yoga and relax.
This has been a pretty boring week with Karlee not being allowed to visit anyone or go anywhere. Today was her CBC at the South Calgary Lab and, of course, a nice little snow storm. We got about 6 inches of snow overnight and this morning. Mom’s bus run took a little longer than normal, but was still home in enough time to take Karlee for her blood work. When they came in the volunteer at the front desk greeted them for the 3rd week in a row. When they left she said, “See you next week.” Maybe that was a sign of things to come…
Once they returned it was again the waiting game – waiting for the phone call from Jo to tell us if she gets to continue treatment or if she is still delayed. Karlee really wanted to go with Mom on the bus run this afternoon so she was waiting patiently for the call. Of course the call didn’t come in time so she had to stay home again. We got the call around 4:30 and Karlee’s counts are still too low for her to start the next phase. Her ANC has come up to 600, but she needs to be over 750 to start the next round. Jo also wants to make sure she is well over 750 if we can get her up there. In this round they increase the dosage and challenge her with more drugs each session so she needs to be good and ready or will end up delayed in the middle of the phase.
Karlee is now off house arrest, but still can’t be out in close contact with other people. She was going to go to Bring A Friend Night with the Beavers tomorrow night, but now has to stay home again. We have booked another CBC for next Monday; hopefully that will be the last blood work at a lab for a little while.
I thought I would share some of the links and stories that have inspired us. Just so everyone understands not all the stories have happy endings, but in some ways these are the most inspiring. To see how a family can come through something as tragic as loosing a child to this awful disease and at the same time remain positive and help other people, is just as incredible as a family that makes it through their battle successfully.
We came across this video recently that was posted by the nurse at the Kids Cancer Care Foundation on Facebook. Megan McNeil was a childhood cancer patient who lost her battle with cancer about a week ago. She wrote a beautiful song to help patients in their battle and the cause was taken up by producer Garth Richardson. The result is a very moving and inspirational song that is raising funds for childhood cancer research and to support families going through this. All the singers in the video are childhood cancer patients which makes it even hard hitting. Please check out the video on YouTube and the Website. It is a great song and well worth the 99 cents on iTunes.
Megan’s Video:
http://www.youtube.com/watch?v=Y9pHISnIj2Y
Will to Survive Website:
http://www.willtosurvive.org/
When we were at camp there was a little boy, Alexander, who we saw several times. At the KCCFA kids Halloween party they let balloons go as a celebration of his life as he had recently lost his battle with cancer. Recently we found his web page on the internet and were very moved by his story and what his family is doing to help other kids with terminal cancer. This is another story of a family that has suffered more than anyone should ever have to, but has come through with a desire to help others going through similar events.
Alexander’s Quest – Little Wishes for Little Warriors
http://www.alexandersquest.ca/
Chloe is another little girl we met at the Alberta Children’s Hospital. Her story is fairly similar to Karlee’s and reading her blog is a nice way to know that there are other people going through the same thing as we are.
http://www.caringbridge.org/visit/chloedavidson
There is also a website that lists blogs and webpages for other kids who are battling leukemia, some who have lost their battle and many who have beaten this ugly disease. Reading these is very therapeutic in various ways. Many times it lets us know that we have it pretty easy compare to some; it lets us see the light at the end of the tunnel by reading so many of the success stories and reading about all the similar experiences we have all been going through.
http://www.acor.org/ped-onc/hp/leukpages.html
We have a friend who has been very moved by Karlee’s story and has decided to ride in the Enbridge Ride to Conquer Cancer and raise money for the Canadian Cancer Society. Please take a look at his website and his blog:
http://web.me.com/kelsomurray/RTCC_2011_-_Russell/About_Me.html
These are some of the links and resources we are using to stay positive and informed through this journey. We did a Q&A type of blog entry a while ago, but if anyone has any questions let us know and we could do another one as many people enjoyed it. E-mail your questions to ronlewis@telusplanet.net.
This morning Karlee had her CBC at the South Calgary Lab. The lab was empty this morning so she actually got in early – first time that has happened! JoJo was off today so Greg called us with the results around 1pm. Karlee is still neutropenic as her ANC has dropped down to 300. All her other counts were in the normal range. Due to the low ANC Karlee has now been delayed as she is not allowed to start the next phase of treatment until her ANC is over 750. There isn’t much we can do to get her ANC up other than encouraging her to sleep and rest enough and eat a balanced diet; basically everything that she should be doing anyway. So instead of starting the 2nd interim maintenance phase tomorrow she is now waiting until next Monday to again have another CBC. If her counts are up at that point she will start on Tuesday February 8th. This now pushes us to starting maintenance into April. It is hard to believe that we wound now be in maintenance if they hadn’t added 2 months to the protocol late last year.
With Karlee being neutropenic she is again under house arrest. Thankfully we don’t have a lot planned this week so staying home shouldn’t be a big deal. The one issue we are going to run into is the weather is supposed to start to warm up and Karlee is going to want to get out and play.
Karlee seems to be developing a little bit of a cough and it looks like she might be coming down with a cold. It will be interesting to see what happens now since she is allowed to have almost no medicine. If she spikes a fever we will probably be headed for admission to the unit. Hopefully she can fight this off and stay out of the hospital!
The Skate-A-Thon is still going ahead strong. We are looking for additional kids to get pledges and come out and skate. We are also looking for donations of prizes for both kids and adults to be used as give aways for the top fund raisers and for draws. If you are interested in skating or donating let us know (ronlewis@telusplanet.net). You don’t need to be from the community to participate in the fundraiser. Thank you to everyone who is getting behind this and making it an incredible event.
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.
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.”
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!”
