Worms, Ski Day, Gala and KCC 2012 Video

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.

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.

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.


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!

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.

Chemo and Christmas Activities

Karlee’s new dose of chemo is already starting to have some side effects.  They increased her dose because her counts have been higher than they like to see over the last 3 months.  This means the chemo isn’t beating her down (and killing cells) as hard as it should be.  Chemo doesn’t just target the bad cells, but it kills all the cells which is supposed to ensure the cancer doesn’t come back.  She has a rash on her feet that she has had for a while, but it has gotten worse and now it is very itchy.  There have been a couple of nights where she has not been able to get to sleep because her feet have been bothering her.  She is also more run down and tired than she has been.  We keep expecting her to spike a fever due to the way she is acting, but her temperature keeps coming back normal.  This week is a double whammy because in addition to the new chemo dose she is on steroids so she is eating like a horse.

Over Christmas we managed to do a number of fun things with the kids.  For Christmas Grandma got us passes to the new Telus Science Centre so we headed there between Christmas and New Year’s.  They have a nice new building and the exhibits aren’t falling apart anymore.  The kids enjoyed the kid’s gallery and liked playing with all the hands on exhibits.  Ryley’s favourite part was taking pictures of objects and turning them into a video and then adding sound to his movie.  He was supposed to be able to see it at home, but they are still working on that part of their website.  We went to one of their shows and everyone was excited about the liquid nitrogen and the isopropyl alcohol rocket.  I’m sure we will get good use out of the passes this year.

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.

This last weekend was a lot of hockey.  We started out with a practice in High River on Friday night.  Jennifer and Karlee went swimming down there while we were on the ice.  Ryley was goalie and worked up a good sweat.  Saturday we had a league game at 9am and then we headed to Strathmore for a tournament game at noon.  Sunday we had another pair of games in Strathmore.  We were definitely in the wrong division for this tournament as we lost all 3 games and 2 of them were ugly.  This was a Tier 5 tournament that is supposed to be division 7/8 and we are division 6.  We have another tournament coming up that is Tier 4… we need to get out of that one or it will be a massacre.  Sunday afternoon we joined Chris, Tanya and McKenzie at the Trico Centre for an afternoon of swimming.  Monday morning the kids were back at school.  Both of them were excited to go back and we are all looking forward to getting back to a routine.

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.

Christmas, Clinic Day and New Years

Christmas Eve was a nice family day that we enjoyed together.  We started the day off with a trip to the zoo.  We have done this a couple of times as we find it is nice and quiet and the animals seems to be more active.  The animals this year weren’t overly busy, but the zoo was nice and quiet.  After the zoo we went to Church with Grandma.  Her Church always does the story of Christmas and invites the kids to dress up and help in the telling of the story.  Ryley was a Shepherd again and this year Karlee was a donkey.  Cousin Everett joined Ryley as a Shepherd and cousin Oliver was a sheep.  It was a very nice service and the kids had a great time.  We went back to Grandma’s for some Chinese food and then headed home to get ready for the big day.  Christmas Eve the kids both get to open one present and it is always pyjamas and a book.  They enjoy the tradition and then they get ready for bed and we read Twas The Night Before Christmas as a family.

For once the kids were not up at the crack of dawn bugging us, but they both managed to sleep in until 7am.  We opened our stockings first and then headed downstairs to see what was under the tree.  The kids were again spoiled.  Karlee got a big Disney Cinderella, Barbie’s, doll clothes, doll furniture, movies and I am sure there was more.  Ryley got lots of lego, an iPod touch, a winter sleeping bad, movies and more.  Jennifer and myself were well looked after too.  After we opened everything at home Jennifer made a few phone calls to Nova Scotia and then we were off to Grandma’s.

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.

Boxing day we decided to get up early and go down to Canadian Blood Services and donate blood.  We had called on Christmas Day to get an appointment as we realized it had been a while since we donated.  We try to donate regularly, but it isn’t always as easy as we would like.  Knowing all the kids at the ACH that need blood motivates us to donate more than we did before.  We stopped at London Drugs on the way home to do a little Boxing Day shopping.  Jennifer’s camera had pretty much given up on us over the last few weeks so we were looking to replace it.  We got a great deal on a camera and a set of headphones for Ryley and didn’t have to deal with any crowds so we were happy.   On the 27th we went to Jennifer’s Aunt Dorothy’s for supper.  Donny, Danny and Eva were there an we had a great visit and a good meal with them.
 
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!

Santa and Discharge from the Hospital

Wednesday morning Dr. Ali stopped by and told Jennifer they were going to keep them another night.  He wanted to wait for all the test results to come back and for all the doctors to look over the information and make sure they knew what had happened.  Karlee’s fever had finally broken about 4:30 in the morning and she was feeling much better.  It was a long night for them since the nurse was in every hour to check Karlee’s temperature and take her vital signs.

Tuesday night they had put Karlee on another dose of antibiotics and then decided to give her a different one to help with the fluid on her lungs.  All the antibiotics and fluids they were giving her caused her to pee very often and gave her a little diarrhea.  It is nice that the hospital provided PJs since every fart seemed to be a little more than just a fart.  Karlee was on issolation so she wasn’t allowed out of her room so it made for a long day.  She also had an IV in her arm which limited her mobility.  Thankfully they put it in her right arm so she still had her left to colour, do crafts and eat.






I arrived up there around 2pm and they were both standing at the windows looking for Santa.  I figured if Santa was coming to visit he would be walking through the halls, but was I ever wrong.  Santa, Mrs. Claus and a couple of elves showed up with the reindeer.  Karlee quickly determined that this had to be the real Santa Claus since he brought reindeer and they only live at the North Pole with the real Santa.  He walked all around the side of the hospital by us and then walked the path all around the units.  It was great being on the main floor since we were very close to him.  Right after Santa left Bingo started.  Karlee had to play in her room so she had a walkie talkie and played over the airwaves.  She won twice and got 2 lucky numbers.  She won some great prizes and even got one for her brother.  Child Life then brought by a ginger bread house for her to decorate.  Karlee had fun decorating and Mom had fun eating the jube jubes.  Wednesday night on the unit is Kids Cancer Care pizza night.  We all enjoyed pizza for supper and then I headed home to pick up Ryley from Grandma’s and get him home to bed.
 
Thursday morning Dr. Ali again stopped by and gave Jennifer the low down on what he thought.  He had seen the echo cardiogram results and there is nothing wrong with Karlee’s heart; the blood cultures had not turned up anything that was concerning and the chest x-ray showed some fluid on her lungs, but nothing to be concerned about.  He figured that while they were trying to get her port working they had moved it around a little and hit her Vagus nerve.  This nerve runs from her brain, through her chest and down to her groin.  It regulates organ function and he figures it got bumped or jarred and that is what caused the issue.  He figured there was very little chance of that happening at home since she would not be accessed at home.  He said after rounds they would be discharged and on their way home.  After several delays and false starts Ryley and I came up to wait for them to get the chemo to bring home.
 
While we were waiting and the kids were jumping around like fools, the Chaplain from the hospital stopped by to talk to us.  Marcel had stopped by before an played some music for us and visited when Karlee was first on the unit.  He told us that he had heard the code called Tuesday, but had assumed it was a test and was never told that the patient was still in the hospital.  We had a nice chat with him and I found out some more information about the code.  When I was told about the code I was told it was only 30 seconds that she was out.  Today I found out that she was non-responsive for about 3 minutes.
 
It is nice to have everyone at home.  Everyone finished their shopping today and tonight and now most of Christmas is wrapped and ready to go.  Hopefully we will have an uneventful and quiet Christmas.

We would like to wish everyone a very Merry Christmas and a Happy & Healthy New Year.  This year has had it’s share of ups and downs, but at the end we have made it through with the support of everyone around us.  It means so much to get an e-mail, a facebook message, a text message or a phone call.  Just to know that people can take the time out of their day to think about us is very comforting.