This weekend was a little crazy, but overall a great time for everyone.
Friday after work we headed down to Turner Valley for the Diamond Valley Christmas Market. We were set up and ready to go in time for the start of the market at 4:30. Dad and the kids headed to the Turner Valley Inn and had a nice supper while Mom stayed and manned the table. Later Ryley and Dad went for a nice walk around town until the wind became a little much. We finished off the night selling one pair of slippers in 4 hours.
Saturday morning was another total crazy day. Ryley had hockey at 8:30, but we had to be there early as they brought in a skate sharpening machine and were doing all the kids, siblings and families skates. Dad dropped everyone off at the arena and went over to Grandma's to drop off everything for the Willowridge Craft Fair. Grandma was going to set up and spend some time running the show in the morning. Dad then headed down to Turner Valley for the second day out there. Between Grandma and Mom Willowridge went pretty good with a few sales, but Turner Valley was a bust again.
Sunday night was Cool Yule at Theatre Calgary with the Kids Cancer Care Foundation of Alberta. We started out with some kid friendly appetizers; jelly, tuna, egg sandwiches, slider burgers and corn dogs. We then headed upstairs so the kids could spend a little time with Santa. They had a wonderful visit with the big guy and got a stuffed meerkat. We then went down to get a family picture taken and then the kids wanted to get their faces painted. While they were waiting for the face painter Dad went and grabbed us seats for A Christmas Carol. We were in the first row of the balcony so we had a great view.
The performance of A Christmas Carol was incredible. The show was well done, but also very exciting with lots of effects and fun. Ryley loves live shows and can't wait for the next one. This was Karlee's first live performance and she behaved very well. There were many kids a lot older than her who were a lot more disruptive (including some adults).
This week is one of Karlee's off weeks but that doesn't mean she gets off without a trip to the hospital. Today was a couple of test to get a baseline for her heart. The next round of chemotherapy can damage her heart so they want to have something to look back on to allow them to determine if there has been any damage. She had an ECG, an Echo Cardiogram and her weekly CBC (Complete Blood Count). The ECG involved hooking up a bunch of electrodes and monitoring her heart. The Echo is basically an ultrasound on her heart. They are hoping that with the low dose that Karlee is getting that there will not be any damage, but it is important to have a baseline to compare future tests to.
Ryley was a little concerned that Karlee had to get a poke in her arm today instead of having her port accessed. We had to explain to him that having her port accessed is more traumatic than just getting a poke in her arm. It is tough for someone who hates needles to understand that Karlee doesn't mind getting poked in the arm or in her port.
Monday was clinic day for Karlee and another sick day for Ryley. Clinic day started out normal enough with everyone running around trying to get Karlee and Mom out the door with everything they need. Once again we had to put on the Amitop as they were leaving to numb the skin over Karlee's port. They were out of the house at 7:40 as we knew it would take longer to get up there due to the snowy roads and the cold weather. Mom called home at 9am and was only on 14th Street at Heritage (not even half way there). There were a couple of accidents that backed up the entire south end of the city. Finally at 10:00 they made it to the hospital, an hour late for their appointment.
Fortunately it was a slow clinic day so they still had a bed left for Karlee. When they saw Dr. Singh he had some interesting news for us. They have changed the protocol for standard risk acute lymphoblastic leukemia. Through clinical trials and research they have determined that an additional 2 month of interim maintenance is beneficial. So instead of a 6 month treatment protocol and 2 years of maintenance we will now have 8 months of treatment and 2 years of maintenance. Hopefully this will decrease the chance of a relapse once she is done treatment. At first Dad was a little disappointed in the extra time, but once it sunk in that this was all for Karlee's benefit he realized it was for the best. An extra 2 months of treatment is nothing compared to a lifetime of health.
Jennifer made sure the paintings and beads that were donated got to the correct people at the hospital. They will use the beads for the kids in unit 1 and the clinic to do crafts and to make jewelry and they will hang the paintings somewhere in the hospital.
Karlee had a very routine clinic day and was out of there about 1:30pm. Of course the drive home was another experience with another accident backing up Crowchild Trail. The trip home was a little better, but was still well over an hour.
Ryley was home sick both Monday and Tuesday. He seems to have a headache and some body pains and just not feel good. He needs to get healthy and stay there for a while.
Tuesday we called and got Karlee a dental appointment since her counts were still good. Dad took her down and she was incredible. She behaved so well and did everything the assistant asked her to do. Of course the fact that Treehouse was on right above her head might have helped. Her teeth are in great shape with very little plaque on them. She got to pick out 2 toys since she was so good. The dentist office has been great to us allowing us to call when her counts are good and they will try and get her in the same day and allowing us to cancel with no notice when she isn't feeling good.
This weekend is a craft fair disaster. We are booked into Turner Valley on Friday night and Saturday and another one at Willow Ridge on Saturday too. Still trying to work out how that is going to work with hockey and everything else, but I'm sure we will figure something out.
This weekend was a lot of craft fairs and some good times with the kids. Friday Jennifer had a craft fair at the Church ministry centre. It was a fairly small craft fair but Mom had a good time and sold a few pair of slippers. We bought a very nice wreath from Allison to hang on our front door and to replace the one that went in the garbage last year. Mom had a good time staying to help clean up and visit with the other vendors.
Saturday morning we dropped the kids of at Grandma's and headed over to the Lake Bonavista Rec Centre to set everything up for the Craft Fair. Grandma brought the kids over and Mom left to take them to Kulinary Kids. The Kids Cancer Care Foundation was doing another great event for cancer patients and their siblings. Both kids had a great time making smoothies, pizzas and decorating a cake. The food must have been good because when Dad picked them up they both had food all over their cheeks.
Sunday morning Dad dropped Mom off at Grandma's and took the kids to the wave pool for a little R&R. We are trying to get Karlee out as much as possible during this protocol as she is still in good shape. The next protocol is supposed to knock her for a loop. After an hour or so of playing in the pool we headed out to spend some of the kids birthday money. Last week Grandma found a plastic castle in the alley that was in great shape, but a little dirty. Both kids have been playing with knights, princesses and fairies with the castle and have been looking for more. Ryley bought 3 knights and a horse and Karlee got a huge dragon and a fairy on a horse. A big thank you to Ingo and Melissa for the Toys R Us gift certificates.
Dad took the kids to Brewsters for lunch and had a very nice meal with both of them. They coloured and played with their new toys and actually ate a very good meal. I'm not sure how butter chicken in pub fare, but it sure was good. Dad then went and relieved Mom at the craft fair for the afternoon.
On of the ladies who was buying slippers had a nephew in Halifax who was diagnosed with leukemia about a month ago. We again realized that Karlee is pretty lucky. This little guy has been in the hospital for a full 36 days and is finishing up the induction phase of treatment. He has downs syndrome and diabetes so they need to be very careful about the effect the chemotherapy has on him. It was nice to be able to give her a little hope in telling her the next 3 months were easier on Karlee than the first. It is amazing some of the unique connections this disease lets you make.
Mom also had another vendor at the market who was very touched by Karlee's story. She donated 3 very nice paintings to the ACH and a bunch of beads for the kids to make jewelry with. Mom is going to take this all up to Unit 1 tomorrow. Hopefully the hospital and the unit can make good use of the donations.
Tomorrow is another clinic day and will be the last day of the interim maintenance protocol. She will receive her largest dose of MTX tomorrow so it may end up being a longer day due to her needing additional fluids. Assuming her counts stay high she will start on the delayed intensification protocol on Tuesday December 7th. We have been told this is the phase where Karlee will lose her hair and will probably be sicker and potentially in the hospital for part of these 2 month. We are hoping that Karlee is able to deal with the next and intensified drugs, but we are also trying to prepare for a rough couple of months.
Thank you everyone for keeping us in your thoughts and prayers and for all the support we have received in meals, phone calls, messages and everything else.
Last weekend was pretty quiet with not a whole lot getting accomplished. Jennifer is getting ready for the Lake Bonavista Craft Fair this weekend (November 20th and 21st) so has been cutting out a bunch of slipper bottoms. Hopefully it will be a good one and she will sell a bunch of slippers and raise lots of money for the Kids Cancer Care Foundation of Alberta.
Late Monday night the snow started; I think we can now say that winter has arrived. We have had snow pretty steady from Monday night through until now (Thursday night) and the temperature has been heading steadily down. Tonight the low is -23 without the wind chill and -29 with the wind. Of course the kids have loved the fact that we now have snow and have been out playing in it lots. Ryley is building snow caves and forts and Karlee loves going for sled rides to take Ryley to school. Mom isn't so excited about this weather as the roads are not in good shape and most people in Calgary don't know how to drive. The first morning she left the bus yard 15 minutes early and was over 30 minutes late getting to her first stop. Then it took over an hour to do a 10 minute drive down Deerfoot. Each day have gotten a little better, but the roads are still a mess and with the City of Calgary snow removal policy, will be until there is a chinook.
Tuesday night Ryley's team had another hockey game. It was a homecoming for Dad as they were playing at Lake Bonavista where Dad played all his hockey. The locker rooms haven't changed, but they have made a few upgrades to the benches and time keepers box. This game was a much better match up and the two teams had a very close battle through the entire game. Ryley's team got their first win of the year with a hard fought 4-3 victory. The team also got their jackets Tuesday night and all looked very sharp in the new garb.
Wednesday afternoon Karlee seemed to want to see if she could run a temperature. After several higher than normal readings everything started to come back down on its own so we didn't have to call the hospital. Wednesday night Karlee had to go for a walk; not sure why, but she was very adamant that we go out for a walk. So in -23 degree weather we bundled everyone up and headed over to the wetlands for a short walk. There were about half a dozen ducks at the north end of the wetlands, in the storm water outflow, looking very, very cold. Hopefully the water coming out of the drain stays warm enough to stop that end from freezing or the ducks get smart enough and fly south soon. Karlee had a good ride in the sled and did a little walking just to prove she can still do it.
Thursday morning Karlee was again trying to run a fever. Finally at 9:30 and 10:00am we got two consistent readings of 38.3 which means it is time to call JoJo, our primary care nurse. Of course she told us to come up and have it checked out. Dad took Karlee up there and it only took about 90 minutes to do the 30 minutes drive. They were out of room in the clinic so we got an isolation room. Dad was always a little leery about being separated and ignored, but these rooms give you a ton of room and your own private bathroom.
Of course by the time we got to the hospital her temperature had come down. They accessed Karlee and took blood for a CBC and cultures and then started a slow flow for fluids just to keep the port running. After almost 2 hours they came back and told us that her counts were normal and they weren't concerned about her about the small spike in her temperature. They told us to keep an eye on her and make sure her activity level stays normal and that her temperature doesn't climb back up. Hopefully everything is going to stay normal and we can have a weekend at home and she can go back for her normal clinic day on Monday to get her chemotherapy.
Wow... I need to find time to blog more often as a lot has happened in the last week. Of course with the last week being so busy there isn't time to blog. This seems like an interesting catch 22.
Saturday Ryley had his first hockey game. It looks a lot like the coach was right and we are seeded in the wrong division. We were defeated 18-0, but the kids had fun. Our coach is very upbeat and manages to keep the kids motivated and enjoying themselves. In the new year we will hopefully be in a more appropriate division.
Sunday was a great day for slippers. There was a craft show in Canyon Meadows and Jennifer had a very busy day selling 10 pairs of slippers in a very busy hour or so in the morning. We are hoping the Lake Bonavista Craft Fair on November 20th and 21st will be even busier. Sunday evening we went over the Keith and Sherry's for some excellent curry and some fellowship. It was nice to see them again and spend some time with visiting. Ron had to run off early and go to a Scout Group Committee meeting that evening.
Monday was family fun night for Ryley's class at school. Both Karlee and Ryley had a wonderful time playing with the toys in the gym. Karlee's energy level is excellent right now. She managed to run and play for the full hour without once complaining of being tired. Tuesday Ryley got to stay at school over lunch to take part in Spanish Club. By the time the end of the day rolled around Ryley had managed to forget everything he learned over lunch hour except how to count.
Wednesday night Ryley's hockey team had a full 90 minutes at the Hockey Skillz training centre. They have a small indoor ice rink, a shooting station and 2 skating treadmills. The kids all had a great time and hopefully learned something. Ryley came off the "ice" literally dripping in sweat; it may have been his best workout ever.
Thursday was Remembrance Day and our Scout Group put on our first, hopefully annual, ceremony. We met at the Burnside Cemetery and had a very nice ceremony at the cenotaph. The Scouts did several reading and the Beavers and Cubs placed wreaths and a cross on the cenotaph. Ryley got to be a sentry and stood holding the Beaver flag for the entire ceremony. Karlee even stayed still and quiet for most of the time. She did want to be held a little as she was having a hard time standing because her legs were getting sore. That is one of the side effects of the chemotherapy that Karlee seems to be very susceptible to.
Friday was a busy day for all of us. Just before 8am Jennifer and Karlee headed up to the Alberta Children's Hospital for another clinic day. This was one of the busiest clinic days Karlee has been to yet; they had 22 kids in there for treatment. Fortunately Karlee was getting a procedure so she got a bed. They only have 8 beds and they normally leave one of them for recovery so there were a lot of kids without beds. Karlee's counts are on the upswing with her ANC now being up to 2400 and her hemoglobin having risen to 116. 2400 is a great number as it shows that her immune system is working properly and she should be able to fight off some infections and viruses. 116 is the highest her hemoglobin has been since she was diagnosed. Both these numbers mean treatment should be able to continue without and interruption and she shouldn't need a blood transfussion any time soon. Karlee ended up being the 3rd and final procedure of the day as she was the oldest. Karlee met a new friend (Chloe) who has the same type of Leukemia and the same risk level as Karlee. Chloe is ahead of Karlee in treatment as she in now in maintenance and Karlee has another 3 months or so until she gets to that level. It was nice for Jennifer to get to talk to other parents who have gone though what we are going through. It also prepares us for the next phase which is going to be much harder on Karlee and the whole family. Chloe also has a blog for anyone who is interested in reading about her journey (http://www.caringbridge.org/visit/chloedavidson). Karlee received her chemotherapy and they got home just after 4pm. This was one of Karlee's longest clinic days yet.
Friday morning Ryley, Dad and Grandma went to Chinook Centre to assist the Kids Cancer Care Foundation with a little fundraising. Kiehl's (http://www.kiehls.com/) is a Skin Care company that is new to Calgary. When they move into a new market they like to find a way to give back to the local community. Friday Kiehl's was donating 100% of the days sales (not profits, but actually sales) to the KCCFA. We started off the morning meeting Leslie from Global TV in Calgary. They were there to do a little story about Kiehl's and the KCCFA. We did a quick interview which aired on the noon news. You can see the video here http://www.globalnews.ca/video/index.html?releasePID=wiit9fjLsYtgZrzQfPwo_4vWQz0NaxMi and we are at about the 35:30 mark. We then walked through the mall handing out flyers and telling people about the great donation Kiehl's was making. We returned to the store to get some more flyers and got busted by the mall cops. We were only supposed to be handing out the flyers in the store. Ryley did a great job keeping one toe inside the store and managing to hand out a bunch of flyers. We had a great time and hopefully managed to raise some money for the KCCFA.
Friday night Grandma came over to babysit so we could go out to a parents hockey get together. We had a really good time eating and chatting with the other parents (and Dad maybe having a few beers). Mom was really tired after the long clinic day so she was ready to leave pretty early.
Both Dad and Ryley have been fighting a cold and cough all week long. Ryley did make it to school every day, but the cough just won't let go. We are keeping him home from hockey this weekend as he has a hard time with the coughing when he is skating hard. Hopefully they will both be able to shake this bug and we can all be healthy for a while.
Next week Karlee has the full week off and doesn't have to go back until Monday the 22nd. We are going to try and get her in for a dentist appointment next week. In order to go see the dentist her ANC need to be over 1500 and this is the first week in a while she has been there.
Ryley started complaining about being really sore and stiff Tuesday morning so he stayed home with what we thought were some of the after effects of the flu. By Tuesday afternoon he was feeling better and running around the house with his sister so he went to the Beaver Halloween party. Wednesday he was stiff and sore in the morning again so we took him to see the family doctor who felt that he had the flu. Basically we were to keep him home, give him lots of fluid and let him rest.
Friday morning Ryley woke up with his hands and feet swollen and very sore. He even had trouble opening his door to get out of his room. We decided to take him down to the South Calgary Urgent Care clinic and see what was going on. They did an excellent job of getting us in quickly and we saw the doctor almost right away. She was worried that it was possibly a reaction his kidney's were having to his strep throat the week before. She wanted an x-ray, blood work and a urine test. Almost as soon as she left we were off to x-ray and when we got back the lab tech was there to take blood. Ryley is not near as brave as Karlee when it comes to needles. We had to wrap him in a blanket so he couldn't move and he still cried like a little girl before they even poked him. Once the needle was in he was kind of interested in what was happening and started watching and asking questions. As soon as she left we were off for a pee. I was rather nervous holding the bottle for a kid who can't hit the toilet to save his life, but somehow he managed to hit the bottle without any issues. After a short wait for the results she let us know that everything had come back normal. She also let us know even if there was something wrong they don't treat it, but just monitor blood pressure. We went home and Ryley got another day off of school.
Saturday the KCCFA but on the Halloween Howler in the gym at the Alberta Children's Hospital. Since Ryley probably didn't have the flu and was otherwise healthy they both dressed up and had a great time. They had a huge contingent of volunteers and staff there to ensure the kids enjoyed themselves. We dropped them off and headed over to Nick's Steak House for some appetizers and a drink. When we got back the kids had enjoyed going through all the stations and got a bag of candy. Half way though the event they all went outside and released balloons for a young boy who just lost his battle with cancer. The memorial service was starting at the same time the kids released the balloons. I'm not sure the kids understood, but it definitely reminded the adults that not everyone wins their battle. After the party we stopped by Grandma's and had some Swiss Chalet.
Sunday was Halloween and we went over to Jay and Carlynn's about 3:30 in the afternoon for a little pre-trick or treating festivities. There were 10 parents and 10 kids there. They hung a piñata in the garage and all the kids took turns taking a swing or two at it. The kids loved it and we quickly saw how giving kids a big stick and a blindfold could very quickly result in a $10,000 cheque from American's Funniest Home Videos. When if finally split open the kids seemed more excited about it finally breaking open than about the candy flying out of it. We all enjoyed a spaghetti supper and then headed out trick or treating with the kids. They all had a great time going out as a group and running from house to house. There were several excellent scary houses that we went to and the kids were a little scared at some of them. Around 7:30 our 2 decided they had had enough and were ready to go home for the night.
Monday was a clinic day for Karlee, but it was an early clinic day. They had to be at the hospital for 8:30 instead of the normal 9am. Ryley made it to school for the first time in a week. Karlee had a pretty routine clinic day with nothing special. She did get to see Dr. Lucy instead of Dr. Singh this week. Dr. Lucy has a special way with kids. She seems to always get a positive reaction from them. Karlee has an ECG and echocardiogram scheduled for November 22nd. They want to establish a baseline before the delayed intensification phase starts in December. They are concerned that some of the chemotherapy drugs can affect the heart. They are confident that the low dose that Karlee will be receiving will not affect her.
Tuesday was another Beaver night, but this night we were making and erupting volcanoes. The kids really enjoyed building them and then adding the ingredients to make them "erupt". Wednesday night we decided to take it to the next level and tried the Mentos and Diet Coke experiment. It was very disappointing as the pop only exploded about 7 feet in the air. We have been told that we need to use only regular coke... none of that diet stuff. Maybe we will try again on the weekend.
Wednesday night Mom headed out to a jewelry party and Dad and the kids stayed home and watched a movie. Mom bought a nice necklace with a Believe charm, a Life, Hope, Love charm and the birthstones of both Karlee and Ryley.
Friday we did a little yard work, took down all the Halloween stuff and got up all the outside Christmas decorations. Jennifer decided we should wrap some of our large tree this year instead of doing so many lights in the back yard. We had a minor issue with the inflatable Santa. He is going to need some minor surgery to repair a torn boot, but should be as good as new very soon.
Ryley made it through a whole week of school which was a nice change from the past couple of weeks. He is still having some issues with the skin on his hands and feet now peeling off. It almost looks like they are healing after a minor burn. Hopefully this will pass quickly and they will stop bugging him. Karlee is doing very well, but she is starting to tire a little more rapidly. The next few weeks of chemo may start to wipe her out again as they keep increasing the dosage. Her counts have started to head down over the last few visits. Her ANC is now down to 800. At this level she is more susceptible to catching colds and other infections. We are not on house arrest yet, but we do need to careful about where she goes. She can't be in close contact with other people who could be carrying viruses.
This week is one of Karlee's off weeks but that doesn't mean she gets off without a trip to the hospital. Today was a couple of test to get a baseline for her heart. The next round of chemotherapy can damage her heart so they want to have something to look back on to allow them to determine if there has been any damage. She had an ECG, an Echo Cardiogram and her weekly CBC (Complete Blood Count). The ECG involved hooking up a bunch of electrodes and monitoring her heart. The Echo is basically an ultrasound on her heart. They are hoping that with the low dose that Karlee is getting that there will not be any damage, but it is important to have a baseline to compare future tests to.
