I can’t believe it has been another 2 weeks since I wrote a blog, but we have been so busy and everything has been going really well. Oral chemo every night has been going really well. Karlee knows she isn’t allowed to eat after 6pm and if someone offers her food Ryley will quickly let them know that Karlee can’t have anything.
On Saturday April 30th, Mom, Tanya and Chris told me we were going to Muse for supper. When we went to drop the kids off at Grandma’s to look after them there were a bunch of people there yelling Surprise! Everyone managed to pull off a surprise party for my 40th birthday. There were lots of friends there and we had a great night. I was definitely surprised and had a great party visiting with everyone. Rumour has it that Karlee might have had some knowledge of the party, but Ryley knew as much as I did. Karlee was a little scared when everyone yelled surprise, but recovered and both kids had a good party!
Sunday night we went to see Travis’s band, But We Digress, play in the Axe Music Weekend Warrior gig at the King’s Head. There were 4 bands playing and Travis was up first. Their band was excellent playing a bunch of great 70s songs. Who knew Travis could actually sing? Travis had a great showing of support from the scout group and from his work. The second band wasn’t that great, but the 3rd band was excellent too. I used to work with the guitar player at EDS and they did a great selection of 80s songs. It was really nice to get out an listen to some live music.
The first week of May was the start of the soccer season. Ryley is playing on Tuesday and Thursday nights with a core group of players from last season. They have managed to not have any games not rained (or snowed) out yet this year. Ryley is enjoying himself this year more than last year I think. Karlee has started her first season of soccer and plays Saturday mornings. She has already had one game rained out. It really cuts the season short when you only have 9 games and you miss a few due to weather. Karlee is enjoying herself, but is still a little timid around the ball. I’m sure she will get over that pretty quick and she will be fine.
Thursday was the Astral Day of Caring Radiothon. I took the day off and we all went up to Market Mall to see people and support the KCCFA. Grandma came with us. We had a fun time visiting with other families and the KCCFA staff. The radiothon raised $225,000 for the Kids Cancer Care Foundation. Thank you to everyone who came out to support us or pledged money!
The Saturday before Mother’s Day I got to see Travis’s band play again, this time way up in the northeast. They were playing in a pretty small little pub, but once again they did a great job and had the place rockin’. They added a couple of new songs which they performed very well.
Mother’s Day we did something completely different this year. The Kids Cancer Care Foundation put on a Rock and Roll Mother’s Day at Camp Kindle, because “Our Mother’s Rock!” Grandma came out to camp with us and we had a nice drive out taking in some beautiful scenery. We had a nice brunch and then the kids went off to do a craft for their Mom’s while the adults mingled and worked on our air band routines. We all headed down to the music room where they had a band playing rock and roll. We then went up one group at a time and did a little air band routine. We did You Really Got Me by Van Halen. It was fun and everyone had a good time up there with the band playing. On the way home we stopped in Cochrane for some ice cream. It was a really nice Mother’s Day.
Tuesday was Karlee’s first clinic day during the maintenance phase. She did her blood work on Monday and her counts came back great so we were good to go on Tuesday. Karlee didn’t have to be up there until 1pm which was a nice change. She was supposed to go in, get accessed, see a doctor, get the chemo and be on her way home within an hour. Of course, as always, nothing goes according to plan. It took longer to see a doctor than normal and then the chemo was late. They didn’t get out of there until 4 in the afternoon. It was nurses week this week so Jennifer took up a bunch of slippers for the girls. It is nice to be able to recognize the nurses for all the incredible stuff they do for Karlee and for us all year long! They are really an incredible group of people who are the most caring, competent and loving people out there. They have made this journey so much more bearable by looking after us and Karlee.
Karlee is again on the steroids for 5 days after clinic day. The first 2 days after chemo she seems to wake up regularly at night crying. We are not sure what is causing it, but is appears to be a side effect she suffers with Vincristine. She has also started eating more due to the steroids. With all the extra eating she did last month she only managed to gain 1 pound. Hopefully she puts on a few pounds so we can get her into a booster seat for the car.
Friday night the A Cappella Fellas did a fund raiser for the Kids Cancer Care Foundation at MacEwan Hall at the University of Calgary. They donated 30 tickets to the KCCFA and we were fortunate enough to get 4. When we got there the kids favourite volunteer, Ashley, was there so they were both happy. They had 3 local artists opening for them and they were all great. It was the first time I have ever seen an electric ukulele. After intermission where Ashley put our kids to work handing out flyers the A Cappella Fellas took the stage. They were excellent and did a wonderful job entertaining everyone. They did a very eclectic set spanning the 60s up to now. If you ever have a chance to catch these guys live (or buy their CD) do it as they are worth it!
We are getting pretty excited about some upcoming events. We are going to Kanaskis this Wednesday with Jamie’s Preschool. We are going to take Ryley out of school that day so he can join Karlee. Mom is going to stay back and work and paint the bathroom. Dad is taking a vacation day and gets to spend a little alone time with the kids. The long weekend is the KCCFA family camp so everyone is excited about that!
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.
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.
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.
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.
On Saturday April 30th, Mom, Tanya and Chris told me we were going to Muse for supper. When we went to drop the kids off at Grandma’s to look after them there were a bunch of people there yelling Surprise! Everyone managed to pull off a surprise party for my 40th birthday. There were lots of friends there and we had a great night. I was definitely surprised and had a great party visiting with everyone. Rumour has it that Karlee might have had some knowledge of the party, but Ryley knew as much as I did. Karlee was a little scared when everyone yelled surprise, but recovered and both kids had a good party!
Mother’s Day we did something completely different this year. The Kids Cancer Care Foundation put on a Rock and Roll Mother’s Day at Camp Kindle, because “Our Mother’s Rock!” Grandma came out to camp with us and we had a nice drive out taking in some beautiful scenery. We had a nice brunch and then the kids went off to do a craft for their Mom’s while the adults mingled and worked on our air band routines. We all headed down to the music room where they had a band playing rock and roll. We then went up one group at a time and did a little air band routine. We did You Really Got Me by Van Halen. It was fun and everyone had a good time up there with the band playing. On the way home we stopped in Cochrane for some ice cream. It was a really nice Mother’s Day.
Friday night the A Cappella Fellas did a fund raiser for the Kids Cancer Care Foundation at MacEwan Hall at the University of Calgary. They donated 30 tickets to the KCCFA and we were fortunate enough to get 4. When we got there the kids favourite volunteer, Ashley, was there so they were both happy. They had 3 local artists opening for them and they were all great. It was the first time I have ever seen an electric ukulele. After intermission where Ashley put our kids to work handing out flyers the A Cappella Fellas took the stage. They were excellent and did a wonderful job entertaining everyone. They did a very eclectic set spanning the 60s up to now. If you ever have a chance to catch these guys live (or buy their CD) do it as they are worth it!
