Friday, October 12, 2012
End of Treatment
Wow!!! It didn’t feel like we would ever get here when this journey started over 2 years ago. We spent lots of time in the Clinic at the hospital, a little time on Unit 1 and lots of time taking medication at home. Now Karlee has had her last procedure, taken her last chemo through her port and last night took her last oral chemo at home. She is officially done treatment, but the journey is not over.
She has an appointment on November 22nd to have her port removed and has 3 doses of IV antibiotics remaining. These will be given during her regular clinic visits which will continue monthly for the next year and then will slowly decrease in frequency until finally it is yearly. From what we have been told she will have yearly visits to an oncologist forever to ensure that everything stays normal.
Karlee was very excited to finally finish up the chemo at home. Tonight was the first night without an medication and no restrictions on eating. She spent all night running to the kitchen and getting snacks. She was so excited being able to eat after 6pm. Hopefully this excitement wears off before she gains a bunch of weight.
Last Friday Karlee had her birthday party at Lloyd’s Roller Rink. She had 7 friends with her as well as Ryley and one of his friends. She had a great time skating and doing girlie things with everyone. They ate and were having a great time until it all went wrong. The girls were going skating before we did cake and presents when Karlee had a good wipe-out at the step onto the rink. She put up her arms to protect her face and we could see something wasn’t quite right with her arm. We called the on-call oncologist and he said we could just go to the emergency department at the Children’s and see what was wrong with it. After a relatively short wait and some x-rays it was determined that she had broken her arm. She got a very pretty pink cast and we were home by about 10pm. Today she had her recheck appointment at the hospital and they took off the cast (by having her pull her arm out) and gave her a splint to wear. The doctor told us this was not the way to put on a cast and we were lucky it stayed on. She is now in the splint for the next 3-4 week, but can take it off to bath and sleep.
Ryley also managed to spend the last week at home with a case of pink eye. Unfortunately for him it was the painful version so his eyes were pretty sore and he had a headache for a couple of days.
Hopefully we are done with all this funny stuff and can get back to normal.
Tuesday, August 7, 2012
Stampede!
Ryley and I went on a simulator while Karlee had a nap in Jennifer’s lap in the shade. After the ride we thought we would watch the start of the Recycled Percussion show. Ryley loved the drums and the incredible energy that the group had. Of course they got the crowd involved in several of their songs. I got picked to come up on stage and help them with the Monkey act. We got to make have lots of fun playing with the bananas. At the end there was a dance off and I was the best Monkey dancer in Calgary!!
Afterwards we bought some tickets on the 5th wheel and truck and grabbed some mini donuts for the walk to the train. We decided to walk downtown as the Stampede station was very busy. We had a great walk and chat all the way downtown and got seats for the ride home!
Sunday, June 24, 2012
Head Shave and Camp Kindle
We also had lots of family (including some from out of town) and friends come out and help us with all aspects of what we were doing. It was very neat to see some people who we haven’t seen in years. Christine (the CEO of KCC) and Ric McIvor (the Transportation Minister) both showed up to lend their support. There are too many people to thank in a blog, but if I didn’t get to say Thanks at the event please know you effort and support were greatly appreciated!
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This past Thursday (June 21st) Kids Cancer Care put out the call for volunteers to help with building bunk beds at Camp Kindle prior to a health inspection on Monday. They needed volunteers to help get 30 bunk beds built in a day. Several friends stepped up and offered to come out to help. A huge thanks to Roland, Brad and Chad for coming out and building. Another thank you to all the people who said they would have come had it been another weekend or if there had been more notice.
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Camp Kindle looks like a completely new place. The 2 new dorms are beautiful inside and out. All the rooms have a great view of the valley and only have 4 people in each room. It is such a nice place that I can’t wait to go out there for family camp. The new dining hall and staff quarters look beautiful too. There is still a lot of work to do for the landscaping as it was a big mud bog this weekend, but I am sure that they will get that all together. I know all the kids who have been affected by childhood cancer are going to love the new camp and really appreciate all the work that has been done.
Wednesday, March 14, 2012
Worms, Ski Day, Gala and KCC 2012 Video
Karlee started the dewormer on Wednesday and Thursday morning (really early) the very rare side effects started. She was vomiting and had diarrhea. It took 3 days for her belly to calm down and start to feel better. Of course Thursday morning I was supposed to volunteer in Ryley’s class at 8:30 in the morning to help with some science experiments. I was a little late getting there, but we had fun learning about sounds and pitch and music.
That evening was the 2012 Kids Cancer Care Parents Quest for the Cure Gala. The KCC had given us tickets this year due to the work we did on the video that they were going to preview at the Gala this year. Both kids were volunteering at the Gala to greet guests and carry in the sponsor’s banners. We arrived early at 5pm so the kids could be there on time. We found Blair and Amber and the kids were gone. We went and sat around and waited for the start of the event to start. Jennifer had a nice new dress and looked great! The theme of the night was A Night With the Tzars. They had a vodka, caviar and chocolate room. The caviar was a very interesting experience; it was actually pretty good. The chocolate was created by Papa Chocolat specifically for this event. It was chocolate with a raspberry vodka infusion and it was incredible. After we looked around at the silent auction items we went back out to see the kids. They were wearing Russian hats and having a good time.
Sunday was the last day of Ryley’s hockey tournament. We went up to Cardel Place for a 9:30am game. The kids played well and we won the game. The final was at 12:30 so we went out for a quick sub and were back to play again. In a very, very close game our team managed to pull out a 5-4 win playing the last 90 seconds down 2 players due to penalties. The kids all loved winning the tournament and it was a nice way to wrap up the weekend.
Tuesday, March 13, 2012
Long Weekend and Eye Infection
Last week was a write off for Karlee. She didn’t make it to school Monday or Tuesday due to hospital trips or Wednesday due to her continued fever. Thursday and Friday were teacher’s convention so she didn’t have school those days either.
Karlee had a fever on and off Thursday and Friday so we didn’t do a whole lot. Thursday morning she hadn’t had a fever since the night before so she went to gymnastics with Jamie’s Preschool. It was the first time she had managed to get there since the school started in September. Jennifer was hoping to take her most weeks, but between sickness and other commitments they have not made it. This was an exciting week since siblings are invited when they are off school. Both kids enjoyed themselves and got to do some gymnastics.
Saturday afternoon we all went down to Fish Creek with the dog to look for a couple of geocaches. We went for a nice walk and found a couple of caches fairly easily. We then headed the wrong way to find the bridge and by the time we realized it we were better off heading back to the car as Karlee was starting to get tired. Sunday we went to check out the penguins at the Calgary zoo. The new exhibit is incredible and well worth the wait. We were there just after 9am and the wait was only about 45 minutes to get in. There are 4 breeds of penguins there and they are very entertaining to watch. We spent a little time wandering around the zoo, but again Karlee wasn’t up to too much. Monday, after hockey, I took the kids down to Fish Creek to find the other 2 caches we were looking for. We found the first one fairly quickly, but the 2nd on was a little more challenging. We looped around the long way and got within about 30 yards and the GPS batteries died. Of course I went to the pack to find the extra batteries and found that Jennifer had put them in the drawer… so we will have to go back to find that one another day.
Karlee made it to school on Tuesday and Wednesday, but we noticed her eye was a little bloodshot both days. Wednesday I took her to the eye doctor and we found out she had a viral eye infection. Of course this resulted in a steroid eye drop and another day off of school. Karlee is having a hard time getting to school this month. Hopefully the rest of the year will be al little better. Friday Jennifer took Karlee back to the eye doctor as her eye wasn’t clearing up as fast as they would have liked. Once they looked closely at her eye with their fancy tools they were sure the drops were working, just a little slower. Monday she went back to the eye doctor again and they were happy with the progress her eye had made and said we could go down to once a day for the drops.
Just to make everything a little more miserable, the hard drive in the new computer has crashed and we have lost 2 months worth of pictures and a bunch of Jennifer’s scrapbooking. I have started to play with it to see if I can recover any of the data, but it looks like it might be a tough, long process.
Karlee had a fever on and off Thursday and Friday so we didn’t do a whole lot. Thursday morning she hadn’t had a fever since the night before so she went to gymnastics with Jamie’s Preschool. It was the first time she had managed to get there since the school started in September. Jennifer was hoping to take her most weeks, but between sickness and other commitments they have not made it. This was an exciting week since siblings are invited when they are off school. Both kids enjoyed themselves and got to do some gymnastics.
Saturday afternoon we all went down to Fish Creek with the dog to look for a couple of geocaches. We went for a nice walk and found a couple of caches fairly easily. We then headed the wrong way to find the bridge and by the time we realized it we were better off heading back to the car as Karlee was starting to get tired. Sunday we went to check out the penguins at the Calgary zoo. The new exhibit is incredible and well worth the wait. We were there just after 9am and the wait was only about 45 minutes to get in. There are 4 breeds of penguins there and they are very entertaining to watch. We spent a little time wandering around the zoo, but again Karlee wasn’t up to too much. Monday, after hockey, I took the kids down to Fish Creek to find the other 2 caches we were looking for. We found the first one fairly quickly, but the 2nd on was a little more challenging. We looped around the long way and got within about 30 yards and the GPS batteries died. Of course I went to the pack to find the extra batteries and found that Jennifer had put them in the drawer… so we will have to go back to find that one another day.
Karlee made it to school on Tuesday and Wednesday, but we noticed her eye was a little bloodshot both days. Wednesday I took her to the eye doctor and we found out she had a viral eye infection. Of course this resulted in a steroid eye drop and another day off of school. Karlee is having a hard time getting to school this month. Hopefully the rest of the year will be al little better. Friday Jennifer took Karlee back to the eye doctor as her eye wasn’t clearing up as fast as they would have liked. Once they looked closely at her eye with their fancy tools they were sure the drops were working, just a little slower. Monday she went back to the eye doctor again and they were happy with the progress her eye had made and said we could go down to once a day for the drops.
Just to make everything a little more miserable, the hard drive in the new computer has crashed and we have lost 2 months worth of pictures and a bunch of Jennifer’s scrapbooking. I have started to play with it to see if I can recover any of the data, but it looks like it might be a tough, long process.
Tuesday, February 14, 2012
Another Fever and Clinic Day
In the past week Ryley has lost his 2 front teeth. The tooth fairy is going broke, but it is good to finally see him losing some teeth.
The fever continued Sunday night and Monday morning. She was supposed to have a penguin celebration at school and the wrap up for their Generosity Days benefiting Camp Kindle, but was not feeling up to going. She still had the fever and was accessed so it just wasn’t possible for her to be there. The supplies for Camp Kindle are just incredible and have far exceeded all expectations. Somerset School really is an incredible group of kids, parents and teachers! Everything will be put to good use and will be appreciated by the kids and staff at Camp Kindle!
Monday afternoon Dad got to take Karlee to the clinic to get another dose of antibiotics. We got there at 2:30, got our isolation room and got the drugs really fast. We were out of there just after 3:30 and on our way home! It was a great visit as it was very fast. We stopped at Fabricland for Mom. She needed some fabric and the other 3 Fabricland’s we had tried were sold out. I think I might have cheered in the store when they had it!
Monday evening she still had her fever going. Thankfully we were allowed to give Tylenol so we were able to keep her comfortable. Tuesday was Valentine’s Day and again Karlee didn’t get to go to school for her party. We dropped off the cheese and crackers for the party and her Valentine’s with another parent and came home to let her rest. Mom went to school to volunteer for special lunch with the rest of the school. When she got back Karlee was again warm. When we took her temperature it was 38.7 so we called up to see if they wanted us to give her Tylenol this close to her appointment. The nurse said to go for it since we would be in in 2.5 hours and could be checked out then. No sooner had we given her the Tylenol than the phone rang again. I figured we were being told not to give her the Tylenol, but they just wanted to see her as soon as possible. So after a little juggling we were off to the clinic again.
We had a fun little time playing DS and watching movies. They gave Karlee the chemo without any issues and we were on our way home again. Dr. Lewis just wanted us to try and control her fever with Tylenol so hopefully that works and we don’t end up at the hospital again this weekend. Before supper we gave the kids their Valentine’s gifts. This year instead of candy and stuffed animals we got them each a little lego set. They both loved them and had a great time building them.
Jennifer has been busy making slippers as we seem to be getting some business off facebook (www.facebook.com/slipperbyjennifer).
The head shave has been going really good so far! We have met our goal already and have increased it by another $1,000. If you want to sponsor us you can do so at the following link: https://secure.csfm.com/kidscancer/shaveyourlidforakid/home/profile.php?participant_id=746992561327074991 We would like to thank everyone for the incredible support for this event!
Monday, February 6, 2012
January 2012
Wow! I always find it surprising when I realize it has almost been a month since I last blogged.
We finally got our winter deep freeze. Starting January 16th we dropped into the –30 range and basically stayed there for a week. The kids were late for school each morning as they waited for Jennifer to come back each day to take them to school. It was just too cold to go outside and walk to school. With the wind chills we were in the –40 area. We can’t complain this year. We have had pretty good weather and this was the first really nasty week.
Karlee had clinic day on January 17th. It was an afternoon appointment so she gets to go to school in the morning.Just after noon they headed up there for a 1:30 appointment. Of course when the weather get cold everyone who works at the hospital parks in the parkade so getting a parking spot took a little extra time. Karlee was just getting an exam and some chemo in her port so she didn’t get a room or a bed. They got to see a new fellow and she was concerned about the scheduling. When they delayed Karlee and then she coded she waited almost a week and a half to have her scheduled procedure and chemo. Then they decided to not alter her other appointments so her time between appointments was only 2.5 weeks instead of the normal 28 days. Once they got everything figured out she had her chemo and they were on their way. Jennifer has started donating 2 pairs of slippers a month to the unit or clinic. She gives them to Child Life and they find someone who would like them and who they would fit. Hopefully this is something the kids in the unit will enjoy.
Karlee has been struggling a little with the new level of chemo. She really needs her afternoon nap now as the chemo seems to take a little more out of her on a daily basis.
Ryley and Jennifer went to their first winter cub camp together. Fortunately the weather cooperated and it wasn't too cold, but was still cold enough to have snow and feel like a winter camp. They both survived quite well and determined that our new winter sleeping bags are not for a winter camp where you sleep inside. Ryley had a great time and really enjoyed himself, but didn't get much sleep.
We have been busy with the kids school over the last couple of weeks. I had a meeting with Karlee’s teacher to help plan out the Kindergarten’s Day’s of Generosity Campaign this year. Every year they pick a charity and collect items for that charity. This year they are collecting items to help the Kids Cancer Care Foundation and specifically Camp Kindle. We went and did a presentation to the entire school about the camp and what they need and Ashlee from KCC said a few words too. It is exciting to see what they can collect and how they can see a tangible result to their charitable work.
We have also been talking with the school about the upcoming head shave we are organizing. I have been growing my hair and beard since June and Ryely has been growing his hair since September. Our goal is to raise $3,000 as a pair and $20,000 as a group. We are going to partner with the school and hold the head shave on Friday May 25th with the school dance! We are very excited and are hoping to raise a ton of money for the Kid Cancer Care Foundation. Right now we are at 11 people getting their heads shaved and are hoping to get a bunch more! The school is hoping to have a few staff members go bald and raise some money.
If you would like to shave your head please send me an e-mail at ronlewis@telusplanet.net. If you would like to donate to Ryley and I you can do so online at https://secure.csfm.com/kidscancer/shaveyourlidforakid/pledge/index.php?participant_id=746992561327074991
Ryley’s hockey team has finally found their stride and has won their last 2 games in epic battles with the kids showing some great determination and effort! Hopefully they can continue this through the end of the year.
Karlee has been struggling a little with the new level of chemo. She really needs her afternoon nap now as the chemo seems to take a little more out of her on a daily basis.
We have been busy with the kids school over the last couple of weeks. I had a meeting with Karlee’s teacher to help plan out the Kindergarten’s Day’s of Generosity Campaign this year. Every year they pick a charity and collect items for that charity. This year they are collecting items to help the Kids Cancer Care Foundation and specifically Camp Kindle. We went and did a presentation to the entire school about the camp and what they need and Ashlee from KCC said a few words too. It is exciting to see what they can collect and how they can see a tangible result to their charitable work.
If you would like to shave your head please send me an e-mail at ronlewis@telusplanet.net. If you would like to donate to Ryley and I you can do so online at https://secure.csfm.com/kidscancer/shaveyourlidforakid/pledge/index.php?participant_id=746992561327074991
Ryley’s hockey team has finally found their stride and has won their last 2 games in epic battles with the kids showing some great determination and effort! Hopefully they can continue this through the end of the year.
Monday, January 9, 2012
Chemo and Christmas Activities
On January 3rd we went rollerskating with the Scouts. This is the second year we have done this activity and everyone enjoys it. Karlee did a great job skating this year without any help. Last year she was too sick to go to the rollerskating event so this was only her second time trying it. She loved getting out there and going for it. Ryley had a great time too as he always does. It is nice to see that Lloyds hasn’t changed in 30 years.
One of the other Mom’s in the clinic the day that Karlee coded wrote a blog entry about it. It is interesting to get another point of view on what happened and how it affects everyone. You can find her blog here: http://www.caringbridge.org/visit/TySparks/journal. I can not link to the exact entry, but it was published on Friday January 6th.
Monday, January 2, 2012
Christmas, Clinic Day and New Years
We beat Randy and Catherine by about 5 minutes getting to Grandma’s. The kids once again devoured the presents and were done opening everything in about 15 minutes. They were spoiled again. We then had breakfast and the kids started playing with all their new toys. We spent the majority of the day at Grandma’s only coming home for a couple of hours in the afternoon for a rest. Supper was excellent as always. Once we finished eating we went home and the kids fell asleep exhausted.
Thursday the 29th was Karlee’s make-up procedure day after the delay last week and then all the issues. Procedure days are always long days, but it was a different feeling for both Jennifer and myself after the issues last time. The visit with the doctor yielded no new information about what might have caused the code blue last time. Everything went normally and Karlee went in for her procedure around noon. Jennifer found this time was just as bad as the first surgery that Karlee had. Waiting for them to bring her back seemed to take forever. When she got back everything was fine, but they had to give her extra sedative to keep her from moving. We think the doctors wanted to limit the amount of sedative so they tried it with a lower level. She ended up getting 6 pokes in the back (instead of the normal one) and was very sore. Everything else about procedure day seemed very normal except her chemo levels were increased.
New Year’s Eve we headed to Bergen around noon. We were going out there to get together with Frances, Roland, Barry, Cyndie and Sean. We had a potluck supper and then sat around the fire bringing in the New Year. It was great to see Sean fly in to visit and it was nice to see Barry and Cyndie again. We don’t see them very often even though they only live 45 minutes away. The kids enjoyed trying to stay up. Karlee made it until about 11 and Ryley was awake to bring in the New Year. The next morning we had breakfast and then went skating on the pond. The kids loved skating outdoors again (first time this year)!
We hope everyone had a safe and Happy New Year!
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