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.
Well it has been a long time since I have blogged. I guess that means everything is going good and we haven’t had any delays or issues. We have been really busy with lots of things going on. I am going to blog about a couple of big events that have happened and will hopefully catch everyone up on everything else that has been happening in the next few days.
The first big event has to be Shave Your Lid for a Kid. Last June we decided we wanted to host a head shave to help raise money for Kids Cancer Care and give back to this incredible organization that has been with us for the whole journey. A year ago we had no idea what to expect or how much we could raise, but I think we can safely say we have exceeded all expectations.
We held Shave a Lid on Friday May 25th at Somerset School. In the last month the school community stepped up and did an incredible job of fundraising, recruiting shavees, providing a great venue and helping us with the planning and pulling off of the event. I was there just after lunch and started helping setup for the Spring Fling (school dance) and getting ready for the head shave. Unfortunately the weather was not cooperating and we made the decision to setup inside. This limited our space a little, but not the enthusiasm of all the people.
We had Kids Cancer Care, DJ Fish and Virgin Radio all show up to help with the event. We ended up with 40 people shaving their heads, over 30 door prizes and ended up raising over $51,000. When we finally got started we were in one of the double classrooms and it was packed. We had great volunteers shaving heads as well as some special shavers for various people. Ryley and I both shaved our heads at the same time and Karlee shaved the majority of my head! We had several Scouts and leaders shave their heads. Both the principal shaved his head and the assistant principal got a pretty blond hair cut and then let the kids dye his hair lots of pretty colours. There were students and parents that decided they wanted to shave their heads too. The outpouring of support for the event was incredible. There are several families at the school that have been impacted by childhood cancer so I think the fundraiser hit home to many people.
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!
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.
We got out there just before 10am Sunday morning and headed up to one of the new dorms. After a little planning and some figuring we got down to work. Chad and I went to one of the downstairs rooms and got right to work. After a little bit of playing around we got a system down and managed to get a couple of beds built. We helped another couple finish their second bed and then went down for lunch. After lunch I worked with Brad and Roland and we got another 2 beds done and then went back and put the missing ladder rungs on some of the beds in the first dorm. We had everything finished by about 4:30 or so and were on our way home.
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.
Monday February 27th was an interesting day around here. Just as Jennifer got home from her bus run the cat vomited behind/beside the couch. Thankfully Jennifer was there to clean it up instead of me. As she is cleaning it up she says, “The cat has been eating elastics,” and picks one up to show us. As gross as it was showing us the “elastic” it was a lot worse when the elastic moved. So… the cat has worms and has probably had worms since it came home from the farm. Of course this means the kids probably also have worms. Tuesday we went to see Dr. Kurt to get the low down on what was happening. The cat has round worms and that means the dog probably has round worms and the kids should both be dewormed. After a few e-mails to the hospital we had a prescription for Karlee and after a few phone calls we had an appointment for Ryley.
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.
Saturday was Kids Cancer Care’s Ski Day 2012. Unfortunately with Karlee still not feeling good it was just Ryley and I again. Kalree was sick last year for this event too so Jennifer had to miss out then too. Ryley again took the lesson and had a good time snowboarding. I got in a few runs before Ryley’s lesson was done and proved that I can still ski. Once Ryley was done his lesson we took a short break and then headed up the chair lift to the top. Ryley enjoyed going up to the top and getting a longer run down. The only issue with the entire day was the lack of a second chair lift. They took out the top turn around for the slower chair so this year there was only one. The lines were a little longer and a lot slower than last year, but we still had a great time.
The next Saturday, March 10th, was the Cub Car Rally. Ryley went and raced his cub car and Jennifer helped keep everyone in order. Ryley’s car was a middle of the road car, which is pretty good for his first cub car. They both had a good day, but were happy to come home and have a little rest before getting ready for the Gala. Karlee and I had a great time and spent a day having lots of fun.
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.
When we got to our table we found out we were sitting with one of my old hockey coaches, Bob Keith, and the mother of the other survivor featured in the video. The dinner was excellent (Beef Tenderloin) and the MC was very funny and entertaining. Dave Kelly (formerly from Breakfast Television and Suessical the Musical) kept everyone laughing all night. They showed the video during the meal and everyone loved it. They did such a good job cutting down 7 or 8 hours of video to 2 or 3 minutes. We loved the way they told our story and told about our experiences with Kids Cancer Care. You can check out the video here: http://www.youtube.com/watch?v=EFNrTOTRrUA&feature=g-all-u&context=G2538196FAAAAAAAAAAA Let’s see how many views we can get and send this video viral! The kids all came out carrying the banners or the sponsors and then posed for a few pictures and were on their was home with Grandma and Uncle Randy. They also had a family come up and tell their story. It was a wonderful and moving story. We enjoyed going out and getting all dressed up and seeing a bunch of wonderful people.
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.
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.
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.
This past Sunday Karlee wasn’t feeling too good, and around noon we took her temperature and it was over 39. After a quick call to the on-call Oncologist Jennifer and Karlee were on their way up to the unit. We had a bit of a scramble getting out of the house as Ryley was going to Skillz at the same time. They dropped us off at Skillz and then realized they didn’t put freezie cream on Karlee’s port so they had to turn around and head back home. They took blood and cultures when they got to the hospital. When they saw the doctor he was concerned about a crackle in her lung so he ordered an x-ray. He wanted to hold off on the antibiotics until he had seen the x-ray so they were a little delayed. There was no radiologist there on Sunday so he read the x-ray himself and felt there were no issues. So after a quick dose of antibiotics they were back to Grandma’s just after 6pm and in time for a slightly late supper.
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.
When we got to the clinic they put us in an exam room as an isolation room. Nurse Allison was in shortly and informed me that this was the room that Karlee had coded in with her. She quickly took some more blood and took us off isolation. On the way in the clinic Karlee got a cute Valentine bear, candy and a heart balloon. It was a nice visit for Dad as he got to see a couple of doctor, nurses, Laura (social worker) and Chantel (Child Life Specialist). We saw Dr. Lewis today and he wasn’t too concerned about the fever as it seemed to be getting lower and was responding well to Tylenol. After a pretty thorough physical exam he decided that we would go ahead with chemo today assuming her cultures from Sunday were still negative. While we were waiting for chemo Chantel came by and Jennifer donated a couple of pair of slippers to the unit. She is trying to donate 2 pairs a month to the unit or clinic. Chantel said the kids enjoyed getting slippers when they are on the unit.
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.
Today was the 100th day of school so Ryley’s class had to dress up as though they were 100 years old. He really enjoyed the idea and ran with it. He got a cane, wore a flannel shirt and a pair of pants. Mom did a comb over on his hair and dyed it white and he wore his glasses on his nose. Even his teacher commented on what a great job he did dressing up.
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!
It has been a long time since I blogged which is a great thing because it means our life is getting back to normal! Except a lot of activities and fun stuff Karlee has had nothing of major interest happen. She still goes for monthly check-ups at the hospital, but so far everything is great. We found her an incredible pediatrician in Okotoks who we went and saw once and Karlee loved her!
Now onto the real reason for a new blog! Today we left Calgary for Karlee’s Wish Trip with the Children’s Wish Foundation. As a little background information, any child diagnosed with a life threatening illness can be granted a wish. We were shocked by this as we thought only terminal patients got wish trips. I must say the social worker must have been shocked when she told us. We were a few months into treatment and everything was going really good. We were in the hospital for something or other and she had us alone in a hospital room and we were just chatting when she dropped that one. Both of us looked at each other and thought, “Shouldn’t the doctor be telling us if something is going that wrong?” Once she explained how it worked and told us how we could use it as a tool to get through the tough spots we were on board.
After a relatively quick drive and a couple of tolls we arrived at the Give Kids the World village. They treated the kids so good. After an introduction meeting they showed us to our Villa. Two bedrooms, two bathrooms with a little kitchen. The kids get the bigger room and a much bigger bathroom.
