I can’t believe how long it has been since I posted anything. I guess that means we are starting to fall into “The New Normal.”
Karlee has been on Maintenance for a little over 2 weeks now and everything is going very well. She takes oral chemo each night at least 2 hours after eating. We are doing this at night about 8pm. It is difficult telling Karlee she can’t have anything to eat after 6pm, but she is starting to understand. She gets 1 6MP pill each night and Tuesday nights she gets an additional 5.5 MTX pills. We haven’t pushed her to start swallowing the pills, but she just chews them up and follows it up with a drink of apple juice. She still gets Septra twice a day 3 days a week and she is now on steroids for the first 5 days of each monthly cycle. It is nice only going to the hospital once a month, but taking the meds at home is a different challenge.
One of the interesting issues we ran into was the lack of Septra at the hospital pharmacy. We have always had this prescription filled at the hospital as we were told it was a compound prescription and can be difficult to find the components at other pharmacies. Last time Karlee was in we tried to get it filled and were told they had been out for a few weeks and didn’t have an estimate of when it would be back in stock. We had a couple of weeks supply so we figured we would wait it out and hope they got more in. This week we knew we didn’t have enough to make it through the week so we called the hospital again and they were still out of stock and suggested we just try phoning around and maybe someone had some old stock. Fortunately the third pharmacy we called had some stock and we had the prescription transferred down there and managed to get her some antibiotics for this week and the next couple of months.
The kids are getting excited about soccer season. Karlee was supposed to start tomorrow, but with the snow Thursday and Friday they have closed the fields and are postponing the season for another week. Ryley is still hopefully going to start on Tuesday assuming they reopen the fields. Ryley has several players from his team last year on his team again so we should have another great year. We had the kids put on their cleats and shin pads and went out last weekend to give them a little practice. They both had a great time which will hopefully translate into a good season.
Karlee has been enjoying preschool again now that she is healthy. Her teacher is retiring this year after 20 years of running Jamie’s Preschool. It will be interesting to see how they replace Mrs. Mackie since she is great with both the kids and the parents and has been such and integral part of the school for so long. Thursday’s seem to be Karlee’s favourite day since she gets to go to Gymnastics first and then goes to school. The people at Star’s Gymnastics do a great job with the kids. Having such a small group and one of the students having an aide means that the kids get almost one-on-one attention. Dad got to take her one week and it was fun to watch her enthusiastically attack each element.
We have started going for nightly walks again now that the weather is a little better. Karlee loves the wetlands just at the end of our street. The geese have started to nest so we will have little goslings very soon. We also saw 3 muskrats swimming around the other night. We have looked for years and have only ever seen one at a time. It looks like she had a couple of little muskrats. Now we take the camera when we go for walks and try and get a picture of the young ones.
We have a pretty full and fun weekend planned with dinner out tomorrow night and then a friend’s band is playing at a pub on Sunday night. Grandma is going to have a busy weekend with a couple of kids.
Friday, April 29, 2011
Tuesday, April 12, 2011
Start of Maintenance and a Hospital Mistake
Karlee was finally able to go back to preschool after her 3 week quarantine due to being exposed to chicken pox. Tuesday morning when they got back from the bus run at 9am Karlee wanted Mom to make her lunch so she could be first to school. It was great to see her so excited about getting back to school. She had a great day back a school!
Wednesday Mom went to the Telus World of Science with Ryley and his class. They went to Titanic: The Artifact Exhibition and had a great time. They were both 3rd class passengers who perished with the ship. While they were playing on the ship Dad got to take Karlee to preschool. We were early and Dad was a little concerned as no one else was there until exactly 12:15. It was fun to see where Karlee gets to go to school.
Saturday morning Mom headed to a safety class with work and Dad, Grandma and the kids were to the Loose Moose theatre to see Robin Hood with Jamie’s Preschool. It was nice to meet some of the families of the kids that Karlee goes to school with and some of the alumni. Mom actually managed to make it to the theatre before the play started so we all got to enjoy it together. It was a very good play with some excellent local actors. Both the kids love live theatre and thoroughly enjoyed Robin Hood. After the show the actors all sat down and signed the programs for all the kids.
Immediately after the play we headed down to Lethbridge to visit Marlene and Titus and family. It was a very long drive down this time. We ate in the car to save time and still managed to stop 3 times for bathroom breaks and to get stuff from the trunk. We finally got there at 2:30. We had a good visit with everyone and the kids enjoyed playing with their cousins. It was a late drive back with us not getting home until almost 11pm. Ryley, of course, had to be a trooper and not fall asleep until 10:45.
We also had an issue with the pharmacy today. Karlee takes Septra 3 days every week, twice a day. Dad called in to request a refill and everything seemed fine; about 20 minutes later they called back and said they didn’t have one of the drugs needed to make the compound prescription and had not had it for the past 2 weeks. We called our primary nurse to see what we could do and if she could get a better update. She let us know that they could get us tablets, but not liquid and they did not have an ETA on the drug arriving since it was a supplier issue. We are going to use what we have and hope they have new stuff by the time we need it. JoJo also gave us the go ahead to get Karlee’s ears pierced. She has wanted to get them done for a while now and we figured that the end of active treatment and the start of maintenance would be a great time to do that!
Tonight was the start of Karlee taking her oral chemo each night. She took a tablet and chewed it up and swallowed everything with absolutely no issues. That was a huge relief for us and should make the next 2 years much easier for us.
Monday, April 4, 2011
Radiothon
Tuesday Ryley got to go to The Royal Tyrrell Museum with Uncle Randy, Aunt Catherine and the cousins. Everyone had a good time and enjoyed seeing all the dinosaurs again.
Thursday morning we were off the the Kids Cancer Care offices to record an interview for Astral Media’s National Day of Caring for Kids Radiothon. You can check out their website at http://www.astral.com/en/social-responsibility.
We arrived a little early and spent some time visiting with all the great staff who work there. We also dropped off the money from the Skate-A-Thon. There is some additional money still to come, but so far we raised over $12,700. Thank you to everyone who made donations, showed up to support us or helped with the Skate-A-Thon. I was not allowed to post this earlier as we had all the money in our house. Now that it has been deposited in the bank and given to the KCCFA Jennifer will let me tell everyone how great they did! We also completed the kids medical forms for family and summer camps.
They were running a little behind, but we still got in about 15 minutes late. We had met the family before us at the KCCFA Gala and have read their entire blog about their journey. It is a long journey they have been through, but they have come through the other side and are doing great. If you are interested in reading about their journey you can find their blog here: http://www.caringbridge.org/visit/shainelynn.
We met with Fuzzy from Virgin 98.5 and chatted with him and a couple other radio people for about 45 minutes. Fuzzy is going to put us in one of his upcoming blogs: http://calgary.virginradio.ca/blog/fuzzy/home.aspx. I’m not sure if they got anything good with the kids talking over us and making strange noises. It was fun to tell our story and talk about everything great the Kids Cancer Care Foundation has done for us. The formal interview was probably about 25 minutes and then we just chatted with them. As we were leaving I was chatting with Fuzzy and he said they got some of the best stuff when we were just talking. I guess that is why they leave the recorder going for the entire time. Afterwards we met the next people to be interviews, Rose and her daughter Savannah. It was really neat to see people we have seen at the events and at camp in the office and get to chat with them again.
The Radiothon is going to air on May 5th on Cjay, Virgin and Classic Country 1060. It is an all day event and everyone is also invited down to Market Mall where they will be broadcasting live. They are going to take our interview and sound clips and do some promos for the 2 week before the event and then should air some of us during the event itself.
The KCCFA is looking for books, for children of all ages, to have at Camp Kindle so the kids have books to read. If anyone has any books they would like to donate please let me know at ronlewis@telusplanet.net and I will arrange to get them to the KCCFA.
Friday evening we went down to Okotoks to go swimming. Jennifer had told both the kids to get their swimsuits and put them in the bag. When we got in there are were getting dressed Ryley and I hear Jennifer’s voice in the men’s locker room telling us they are not going swimming. It seems Karlee hadn’t listened to her Mom and hadn’t bothered to tell anyone that she didn’t get her suit. Ryley and I had a good, but short swim.
Early Saturday morning the snow started and didn’t stop until Saturday night. We ended up with a little over 10 inches of very heavy, very wet snow. We did a lot of shovelling and trying to drive through this mess. Saturday morning because of the weather we decided to drive downtown and give blood since it wouldn’t be busy. We were there at 9am with one appointment between the 2 of us. Everything went great and the kids even behaved for us. Jennifer had some issues with one of her arms so they ended up poking both of them to get a pint from her. When we got home the kids went outside an played and then had some friends over. Dad went to lodge on Saturday night for the first time in a while. It was great to see everyone again.
Sunday we finally made it to church again and did supper at Grandma’s with everyone. Monday the KCCFA dropped off a bunch of meals for one of their new programs, Cooking and Caring. It was great filling up the freezer with great meals.
Last blog I mentioned that Karlee will be getting a little chemo in the maintenance phase, but I guess I should have explained that a little more. This is all kind of on a little bit of rumour, a little bit from talking to other people and little from the doctors and nurses, but we don’t have a firm plan yet. We should only be at the hospital once a month for the next 2 years. Once every 3 months she will get a procedure to inject chemo into her spinal fluid as well as get vincristine through her port. The other months she will only get vincristine. She does her blood work the day before and then on clinic day she only goes in, gets her port accessed and gets the chemo pushed. Hopefully those days will be under an hour. The new challenge that we are going to face is that Karlee is going to get oral chemo every day. Once a week she will also get a different oral chemo and 5 days a month she will be on steroids again. The biggest challenge (we think) is that it needs to be taken on an empty stomach. She can not have anything to eat 2 hours before or 1 hour after the chemo. Karlee likes to eat as soon as she gets up, kind of grazes all day and needs her bedtime snack. We are still debating between last thing at night and first thing in the morning. We would welcome any suggestions on this one: ronlewis@telusplanet.net
Today was also a blood test day for Karlee. We got the counts back this afternoon from our primary nurse and everything is great.
Thursday morning we were off the the Kids Cancer Care offices to record an interview for Astral Media’s National Day of Caring for Kids Radiothon. You can check out their website at http://www.astral.com/en/social-responsibility.
We arrived a little early and spent some time visiting with all the great staff who work there. We also dropped off the money from the Skate-A-Thon. There is some additional money still to come, but so far we raised over $12,700. Thank you to everyone who made donations, showed up to support us or helped with the Skate-A-Thon. I was not allowed to post this earlier as we had all the money in our house. Now that it has been deposited in the bank and given to the KCCFA Jennifer will let me tell everyone how great they did! We also completed the kids medical forms for family and summer camps.
They were running a little behind, but we still got in about 15 minutes late. We had met the family before us at the KCCFA Gala and have read their entire blog about their journey. It is a long journey they have been through, but they have come through the other side and are doing great. If you are interested in reading about their journey you can find their blog here: http://www.caringbridge.org/visit/shainelynn.
We met with Fuzzy from Virgin 98.5 and chatted with him and a couple other radio people for about 45 minutes. Fuzzy is going to put us in one of his upcoming blogs: http://calgary.virginradio.ca/blog/fuzzy/home.aspx. I’m not sure if they got anything good with the kids talking over us and making strange noises. It was fun to tell our story and talk about everything great the Kids Cancer Care Foundation has done for us. The formal interview was probably about 25 minutes and then we just chatted with them. As we were leaving I was chatting with Fuzzy and he said they got some of the best stuff when we were just talking. I guess that is why they leave the recorder going for the entire time. Afterwards we met the next people to be interviews, Rose and her daughter Savannah. It was really neat to see people we have seen at the events and at camp in the office and get to chat with them again.
The Radiothon is going to air on May 5th on Cjay, Virgin and Classic Country 1060. It is an all day event and everyone is also invited down to Market Mall where they will be broadcasting live. They are going to take our interview and sound clips and do some promos for the 2 week before the event and then should air some of us during the event itself.
The KCCFA is looking for books, for children of all ages, to have at Camp Kindle so the kids have books to read. If anyone has any books they would like to donate please let me know at ronlewis@telusplanet.net and I will arrange to get them to the KCCFA.
Friday evening we went down to Okotoks to go swimming. Jennifer had told both the kids to get their swimsuits and put them in the bag. When we got in there are were getting dressed Ryley and I hear Jennifer’s voice in the men’s locker room telling us they are not going swimming. It seems Karlee hadn’t listened to her Mom and hadn’t bothered to tell anyone that she didn’t get her suit. Ryley and I had a good, but short swim.
Early Saturday morning the snow started and didn’t stop until Saturday night. We ended up with a little over 10 inches of very heavy, very wet snow. We did a lot of shovelling and trying to drive through this mess. Saturday morning because of the weather we decided to drive downtown and give blood since it wouldn’t be busy. We were there at 9am with one appointment between the 2 of us. Everything went great and the kids even behaved for us. Jennifer had some issues with one of her arms so they ended up poking both of them to get a pint from her. When we got home the kids went outside an played and then had some friends over. Dad went to lodge on Saturday night for the first time in a while. It was great to see everyone again.
Sunday we finally made it to church again and did supper at Grandma’s with everyone. Monday the KCCFA dropped off a bunch of meals for one of their new programs, Cooking and Caring. It was great filling up the freezer with great meals.
Last blog I mentioned that Karlee will be getting a little chemo in the maintenance phase, but I guess I should have explained that a little more. This is all kind of on a little bit of rumour, a little bit from talking to other people and little from the doctors and nurses, but we don’t have a firm plan yet. We should only be at the hospital once a month for the next 2 years. Once every 3 months she will get a procedure to inject chemo into her spinal fluid as well as get vincristine through her port. The other months she will only get vincristine. She does her blood work the day before and then on clinic day she only goes in, gets her port accessed and gets the chemo pushed. Hopefully those days will be under an hour. The new challenge that we are going to face is that Karlee is going to get oral chemo every day. Once a week she will also get a different oral chemo and 5 days a month she will be on steroids again. The biggest challenge (we think) is that it needs to be taken on an empty stomach. She can not have anything to eat 2 hours before or 1 hour after the chemo. Karlee likes to eat as soon as she gets up, kind of grazes all day and needs her bedtime snack. We are still debating between last thing at night and first thing in the morning. We would welcome any suggestions on this one: ronlewis@telusplanet.net
Today was also a blood test day for Karlee. We got the counts back this afternoon from our primary nurse and everything is great.
Monday, March 28, 2011
Last Treatment of Interim Maintenance
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.
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.
Sunday, March 20, 2011
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.
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 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.
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.
Monday, March 14, 2011
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!
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.
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.
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!
Wednesday, March 2, 2011
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!”
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.
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!”
Subscribe to:
Posts (Atom)