Clinic Day and Change to Protocol

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.

Lake Bonavista Market

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.

The Mysterious Fever Returns

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.

Kiehl's Opening in Calgary and another Clinic Day

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.

Rough Week for Ryley and Another Clinic Day

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.

Clinic Day and KCCFA Board of Directors Presentation

Friday was an exciting day for everyone.  Mom and Dad were making a presentation to the Kids Cancer Care Foundation of Alberta Board of Directors.  We were sharing our journey so far and letting them know the impact the KCCFA and the ACH has had on our lives so far.


We were all up early as Grandma was coming over for just after 7 to take Karlee to her clinic day and to help Ryley get off to school.  Mom and Dad were off to the Ranchman's Club downtown by 7:30.  When we arrived about 8:15 we parked in the free underground parking (yes, there is still free parking in the downtown core, just don't ask what a membership at the club is worth or who you have to be to get one).  We were directed to one of the rooms on the main floor.  On the way in we met Christine McIvor (Ric's wife in case anyone was wondering) and Mike from the KCCFA.  As the directors started coming in we were introduced to everyone.  Everyone we met was incredible nice and genuine.  Around 8:30 a continental breakfast was available and then we all headed into the meeting room to get ready.  Once the last few stranglers arrived we started.  They went around the table and everyone introduced themselves and gave us a little of their background on the board.


Just before 9 we started our presentation.  Jennifer was a little emotional at the start, but everything went very well and we finished up around 9:25.  We spent about 10 minutes answering questions and getting some very positive feedback on what we had to say.  They were impressed with the "human" side of camp.  They always hear about how far the bathroom needs to be from the door or where this building needs to go, but don't get to hear about the benefits the parents and kids get from going to camp.  One fact we left out that I wish we had included was that Karlee was getting very close to needing a transfusion prior to camp (they had done the blood work and everything) with her counts being in the 70s.  When we returned from camp her counts were the highest they had ever been; even higher than immediately after her transfusion.  We presented Jack Perraton (Chairman of the Board) and Christine McIvor (President and CEO) with "Hope Stars" to thank them for everything they have done for us.  Mike in turn presented us with some KCCFA gold ribbons and a beautiful blanket for taking time to come give them the presentation.  We were on our way to the hospital by about 9:45.


Karlee and Grandma had left for the hospital about 8am, but ran into a huge traffic jam on Crowchild and didn't get there until almost 9:30.  Karlee then proceeded to fall off the chair and upset herself.  She then didn't want to get her port accessed until Mom got there.  Karlee ended up not being accessed until almost 10:30 so that resulted in a delay in getting her fluids into her which resulted in a delay of getting her chemotherapy.  She needs 2-4 hours of fluids before getting MTX through her port to help prevent possible side effects.


Dad picked Ryley up from school at noon and, since Dad had a vacation day, took Ryley to lunch.  We had a great lunch and Ryley even finished his home reading.  Around 3:00 Karlee and Mom got home from the hospital with Karlee all medicated and good for another 10 days.


Friday evening Ryley had a hockey practice in High River.  While Ryley was playing hockey Mom and Karlee went swimming in the pool down there.  The pool was a little cooler than Karlee was used to, but she seemed to have a good time.


Early Saturday morning Ryley was up vomiting.  He didn't feel sick or anything, just seemed to want to vomit regularly and had an upset tummy.  By about noon he was feeling much better.  Saturday afternoon we finally got the last of the pool base taken down so we can again use our parking pad.  This seemed to be important with winter coming soon.


Saturday afternoon and evening we had a team building event for Ryley's hockey team.  One of the parents on his team owns Kart World just north of Chinook Centre.  We all went there and rode go karts, played mini-golf and laser tag.  Karlee and Ryley both drove the kids karts by themselves and had a great time.  Ryley got in the bigger carts by himself later in the day and had a blast.  Both kids rode in the 2 person karts with Mom and Dad and both said Dad went much faster.  Everyone had a great time and we were home around 8pm so everyone was tired.


Sunday morning we took the kids swimming.  We went to the Southland Leisure Centre and Karlee had a great time.  She was laughing and giggling the whole time and really enjoyed herself.  We are trying to get her out doing stuff like this now as Dad is thinking her great mood is about to go downhill.  Her MTX dose is increasing every 10 days and she is getting closer to starting delayed intensification at the start of December.  From talking to other people this phase is the hardest on the patients and they tend to be fairly sick and potentially in the hospital a fair bit.


Monday morning Dad and Ryley woke up feeling sick and Karlee had a bit of a cough.  Hopefully this isn't something that is going to be with us for a while, but will be a quick 24 hour thing.  We have a pretty busy week coming up if everyone can stay healthy.  Tuesday Ryley has Beavers, Thursday night we have Ghouls Night Out at Heritage Park with the Beavers and Saturday the KCCFA is putting on the Halloween Howler at the ACH for the kids.

Speech for KCCFA Board of Directors

Here is the speech we delivered this morning for the KCCFA Board of Directors.  Ron read the words in black and Jennifer the words in red.

Most people’s biggest fear is speaking in public.  I would have agreed with that 3 months ago, but now I think most people’s biggest fear should be being told, “Your child has cancer.”  Today we are living through both those fears.

My name is Ron Lewis and this is my wife Jennifer and we have 2 children; our son Ryley who is now 7 and our daughter Karlee who just had her 4^th birthday.  We would like to thank you for the invitation to come and share our story with you.  We are going to take you through our cancer journey so far and discuss the impact the Alberta Children’s Hospital and the Kids Cancer Care Foundation of Alberta have already had on our lives.

One of the first things we did once we got the diagnosis was to start a Blog to keep everyone up to date.  We have received lots of positive feedback on the blog and you will see some quotes from the blog on the screen behind us.  We have also included pictures of our journey and of events that have been put on by the KCCFA.

Our journey officially started on Friday August 6^th of this year when our 3 year old daughter, Karlee, was diagnosed with acute lymphoblastic leukemia.  As everyone else’s journey did, ours started before the official diagnosis with strange and unexplained pain and several trips to the hospital, urgent care and the doctor’s office.

The first sign anything was wrong with Karlee was back in the middle of May when she started complaining about tummy pain.  We realized this wasn’t a typical tummy ache, so we went to the South Calgary Urgent Care Centre.  They couldn’t determine a cause so we were back at home after a few hours.  The pain didn’t go away so we took her to the Children’s that evening.  After almost 24 hours in emergency we were told it was interception of the bowel and it had corrected itself.  We were also told that the odds of this ever happening again were very slim.

The next episode was almost 2 weeks later, to the day.  After this trip to emergency we were told that it was constipation and to start her on laxatives and fibre.  We had 3 more very painful episodes that lasted 2 or 3 days each that we treated at home or through our family doctor using Tylenol for the pain.  These episodes were the start of us no longer being in control of our lives as we ended up being at the mercy of the pain as Karlee was completely incapacitated during these times.  We ended up missing a couple of camping trips and several day trips we had planned due to hospital stays or Karlee not being able to leave the couch.

Finally on July 31^st she had another episode and this one seemed more intense than the others.  We took her to the Children’s Hospital again and this time they admitted her to finally get to the bottom of what was going on.  Since it was the long weekend, not much happened except a lot of sitting in a room and trying to entertain a 3 year old.  The next week brought a lot of specialties to look over Karlee and say it wasn’t their area.  We started to see how the hospital looks after patients and families this week.  The nurses on Unit 2 were great and the Child Life Specialist did a great job helping keep both children entertained.  The nurses on Unit 2 nicknamed her “Karlee Care Bear” and they all said she had the sweetest little voice.

Wednesday we saw Dr. Singh for the first time.  He didn’t feel it was cancer but was still going to do a flow cytometry test on her blood.  On Thursday they again brought Dr. Singh in and he wanted to do some further testing on Friday.  Friday morning she went in for her first bone marrow aspirate and spinal tap.  About 3 o’clock Friday afternoon Dr. Singh and JoJo came to our room and told us that Karlee did have indeed have leukemia and we would be starting treatment on Tuesday.

This was the worst moment of our life.  After the words “Your child has cancer” you pretty much tune out everything else that is said.

As bad as this news was we chose to look at this with a more optimistic view.  At least we had an answer to what was causing her pain and we had a starting point to make her better.  We knew that in the next few days we would have a plan to get Karlee back to being a healthy little girl.

Dr. Singh didn’t feel there was any benefit to keeping us in the hospital over the weekend so he discharged us with instructions to return to Unit 1 on Monday morning.

Getting discharged right away was a nice treat as we had a chance to digest what we had been told and to regroup as a family over the weekend and spend a little quality time together.

Friday we started talking to Karlee and Ryley about her leukemia and what will be happening over the next few months and years.  Explaining what is happening to a 3 and a 6 year old is challenging, especially when you don’t fully understand everything yourself.  We explained some of the physical changes Karlee would be experiencing including losing her hair due to the chemotherapy.  She was very accepting of the fact that she would soon look like Dad.  We also explained to her that she could help another little girl going through what she is by donating her hair to help make a wig.  She agreed that she wanted to help someone else, so Saturday we make an appointment to cut her hair.  This was Karlee’s first real hair cut as up until this time she had only trimmed her hair.  Beaners was very helpful getting us in on short notice and giving us a private area to help prevent germs.  Cutting her hair was a lot harder on Mom and Dad than on Karlee, because it make everything real.  At the end she had a beautiful sassy hair cut with pink streamers in it which we all loved.  We mailed the hair off within the next few days and Karlee and the whole family received several thank you letters.

Sunday night we all got an idea of what the next several years will be like.  About 11 that night Karlee seemed to be in a lot of pain; we figured she was probably having another episode.  Her temperature was pretty good, but it seemed like a good time to call the oncall oncologist.  After a few back and forth calls they felt it would be best to bring her in due to her lack of fluid intake.  Ryley got a rude wakeup call when he was woken up and whisked over to Grandma’s in the middle of the night.  This really bothered him as he didn’t understand what was going on and why Karlee was going to the hospital.

Our first night in the hospital gave us a taste of the incredible staff on unit 1.  Even though we arrived after 1 in the morning they greeted us in a friendly manner and ushered us into our room.  We saw a doctor with 15 minutes of arriving and the nurse was with us the whole time.  We were treated with respect and kindness as we got the tests and admission procedures completed.  It was a rough night for the two of us as we tried to sleep on the bed or the chair.  Karlee on the other hand had a great sleep in the bed after having some fluids and a little codeine.

Our first day in the Oncology Unit was a whirlwind of doctors and people.  We saw 5 different groups of specialists including the Paediatricians, Oncologists, Infectious Disease Specialists, Haematologists and Surgeons.  We also talked to the social worker a couple of times that day.  The first visit was a really quick one to introduce herself and deliver a bag from the Kids Cancer Care Foundation.  The bag contained some toiletries, gum, cards and candy, a little planner and some knickknacks.  It was great to get something like this as it had everything you needed… just add clothes and go.  It was a nice gesture and let you know that other people were thinking about you and what you needed.

Later in the day the social worker again stopped by and spent considerably more time talking with us.  The first thing she did was give us a book that was provided by the KCCFA.  This book was written to specifically address childhood leukemia and to help answer some of the questions we have.  Prior to getting this book we had been using the internet to find out answers.  As everyone knows the internet can be a great resource for information, but it can also be one of the best sources of misinformation.  The first search I did was for Leukemia and I got a startling fact like this one:  In 2000, approximately 256,000 children and adults around the world developed some form of leukemia, and 209,000 died from it.  I quickly realize that I needed to refine my search criteria to look at childhood leukemia and to ensure I was looking at reputable sites.  This book was great as it was a reputable source, talked specifically about childhood leukemia and had current information.

We also had our first family meeting to talk about treatment and to provide consent for the treatment.  It is a little intimidating going into a room with a couple of doctors, a nurse and a social worker, but as with everyone we had dealt with at the Alberta Children’s Hospital, they quickly put us at ease.  They answered any questions and concerns we had and were willing to explain everything until we understood it.

Tuesday was a very interesting day with lots of action in both the treatment and the family care area.  Karlee had surgery in the morning to have her port inserted.  The surgery went very well and she woke up without incident and was in very little if any pain.  During the surgery Karlee got her first chemo injection into her spinal fluid.  Later that afternoon Karlee also got her first chemotherapy treatment through her port.  The first day of treatment went very smoothly with only some minor nausea which was quickly treated with medication.

Tuesday Ryley spent some time in the Edward Sunshine Room with the Child Life specialists.  He really enjoyed doing the crafts and playing the games, but the most exciting thing was being asked if he wanted to go to camp next week.  When Jennifer went down to see how Ryley was doing she was shocked that an offer like this would come along at all let alone on the second day after being admitted to the unit and not even for the patient, but for a sibling.  We talked about it with Ryley and he seemed excited about the opportunity so we filled out the paperwork to see if they could get him in.

The next day it was confirmed that Ryley could get into camp even though it was very short notice and he was only 6.  We were a little nervous about him being away from us overnight, but we kept talking it up with him and trying to make it sound exciting.  His major concern about camp was where he was going to get dressed.  We kept telling him that if that was his biggest worry he would have a great time.

Wednesday we were also introduced to the beaded journey.  The beaded journey allows the family and the patient to track their hospital visits, pokes, chemotherapy, special events and just about everything else.  The KCCFA provides the beads for the cancer patient and provides the start of the journey for siblings.  We decided this would be a great way to allow the kids to see visually what will happen over the next few years.  Ryley was so excited about his beaded journey that we had to drive over to the mall right away to get him beads.

Wednesday we were also offered a pair for tickets to sit with Vince Danielson at a Stampeders game by Child Life.  This was also another exciting event for Ryley as he had never been to a football game.  It was also exciting for me as it had been a while since I had been to a game and I had definitely never been to a locker room.

Wednesday night was also our first Pizza Night on the unit.  We just spent a little time in with the other people that first night, but it was still therapeutic to talk to other parents and see other kids.

As a finale on Wednesday our Pastor at our church did a special sermon.  When he heard about what we were going through he changed his sermon to reflect what was happening.  This is one of the first crisis’s our church had gone through that was going to have a long term impact so they are all concerned about us.  Our church community has rallied around us and assisted us with meal and support as needed.  Unfortunately we were still in the hospital and couldn’t make it to church, but we did listen to it the next day on the internet.

Friday morning we went to Coffee Time on the unit put on by the KCCFA.  Again we met a few more people and enjoyed a few stories from other parents.

Friday we also challenged Karlee’s supposed penicillin allergy and she passed with flying colours.  Since we challenged the allergy and Karlee needed her chemotherapy our day pass turned into a 3 hour pass.  It was still a nice break for Karlee to get out of the hospital even for a little while and see her pets and home.

Saturday we were discharged from our first stay in the oncology unit.  I would like to read a quote from the blog about this weekend.

“Sunday was a nice relaxing day at home.  We spent a little time playing in the yard and doing a lot of nothing.  The Kids Cancer Care Foundation and the Alberta Children's Hospital are doing an incredible job of ensuring the both Ryley and the rest of us are taken care of during this journey.  We all know this is going to be a huge stress on the family and we realize we need to make sure Ryley is looked after emotionally.  These 2 groups are making that so much easier to ensure he gets to do fun stuff, has someone to talk to and hopefully understands some of what is going on.”

Sunday night Jennifer and Karlee went to Grandma’s for supper while Ryley and I headed up to the football game.  It was a very exciting game with the Stamps thoroughly trouncing the Eskimos.  Ryley’s name was announced over the PA system and everyone around us kept giving us the little balls they tossed out.  After the game Vince took us down to the locker room to get Ryley’s hat and shirt signed by the players.  It was a once in a lifetime experience that he really enjoyed.  Another huge advantage to going to the game was that Ryley got to meet Ashley, one of the volunteers going to camp the next day.  It made me feel better that he would at least know someone out there.

The next morning we were up bright and early and headed to the bus pick up point for Camp Kindle.  Ryley was excited and also a little nervous about going to camp, but he wouldn’t admit it.  When we got there we met Blair, another of the volunteers and a cancer survivor himself.  Blair immediately started chatting with Ryley and making him feel comfortable.  When everyone else showed up it was great.  Everyone made us feel welcome and made registration so easy.  We were particularly impressed with the pillow case they had for Ryley.  We only first found out about the camp 5 days ago and they already had a personalized pillow case for him.

At first when we got there Ryley was a little shy and not sure about the other kids.  By the time they were ready to load the bus Ryley had forgotten I was there and wanted to get on the bus with his new friends.  I had to remind him to come say goodbye to me before he got on the bus.

The next day was our first clinic day.  Everything went smoothly; she had her procedure and got her chemotherapy and we were out of there in the early afternoon.  We had to stop at Ikea on the way home to get some chair cushions for her.  Either the chemo or the steroids were making her body very sensitive and the chair was uncomfortable to sit in now.  Karlee also found having the animals around her to be very annoying.  Later that afternoon Jo called from clinic and told us that Karlee’s haemoglobin had fallen to too low a level and she would have to come back tomorrow for a transfusion.

We had been expecting a transfusion since the start of this journey, but for some reason this seemed to bother us.  We had some issues with the transfusion process.  Karlee is IgA deficient so there was some discussion between the oncologists and haematology about how much to wash her blood.  The end result was that Karlee didn’t get the transfusion until almost 5pm and so they could monitor her she had to stay overnight.  The only good thing about being admitted on Wednesday is that it was pizza night.  Grandma sat with Karlee while Mom and Dad went down and got everyone food.  We also got to call camp that night and talk to the counsellor and see how Ryley was doing.  It sounds like he is having a great time and has figured out that getting dressed in front of a bunch of other boys isn’t a big deal.

The next day we were discharged in the morning and that afternoon we again got a call from Jo.  This time it was great news; less than 1% of Karlee’s cells are now blasts.  When she was diagnosed between 80 and 90% of her cells were blasts.  This meant she was responding very well to the treatment.  This was also the day where I officially became the medicine man.  For some reason Karlee prefers taking her medicine from Dad.

On Saturday of that week I drove out to Camp Kindle to pick Ryley up.  I’m going to read another quote from the blog to describe the camp and his experience: “The camp was absolutely beautiful situated in a beautiful valley with lots of huge trees and very nice buildings.  Ryley had a great time at camp and even behaved himself.  He enjoyed the archery and the survival training.  He learned to light a fire with 2 matches, build a stretcher and learned some basic first aid.  They had a banquet and dance on the last evening.  Ryley had a tattoo on his forehead, gel in his hair and his fingernails painted a nice blue (it was the only boy colour).  On the drive home we stopped at Smitty's in Cochrane and had breakfast.  Ryley is looking forward to going to camp next year already.  He met some nice new friends and liked all his counsellors and volunteers.” 

The next week we ended up spending a couple days in the hospital due to Karlee’s fever and energy level.  The high point of this visit was being in there on pizza night and Karlee being in a good mood.  We managed to sit and talk with the other families and the kids had a great time.  This was one of the first times we actually got to meet the other families and spend some time with them.

We also got some more good news during this hospital stay that Karlee had a favourable chromosomal analysis.  This again improved her prognosis.

The long weekend in September we didn’t end up getting admitted, but we did end up at the hospital on Friday, Saturday, Sunday and Monday for antibiotics and to try and get Karlee’s port working again.  Fortunately everything worked out fine and she didn’t need to be admitted.

The rest of September was pretty standard for a cancer patient.  Karlee had a weekly trip to the clinic for treatment and several other trips to the hospital to get some IV antibiotics due to unexplained fevers. 

When we originally heard about family camp we were all very excited, but at the start of September it looked like Karlee would not be healthy enough to go.  On September 21^st Dr. Singh gave Karlee clearance to go to camp.  Once again Mary was incredible getting us all signed up and everything ready to go in 3 days.

We arrived at camp on Friday evening and immediately the staff and volunteers were everywhere to help us get settled in.  Both Karlee and Ryley knew one of the volunteers from camp and the hospital.  We were in a room with 2 other families.  One family had a daughter with leukemia who was almost the same age as Karlee and another younger daughter.  The other family had a daughter who lost her battle with cancer, but would have been the same age as Karlee and a son who was a year younger than Ryley.

I figured we would have fun at camp, but wasn’t sure about the other parents and what they could do for us.  After the first night of just sitting around and talking with parents I knew that the relationships were the real reason we were out here.

Friday night was a time of getting to know other people and later having a camp fire.  The kids loved the camp fire songs and went to bed thoroughly exhausted.  The volunteers stayed in the dorm to look after the kids while the parents all go together in the dining hall for a few presentations and to spend some time with the other parents.

Saturday morning was a very active time.  Ryley and I took off for the giant swing after breakfast; it was fun helping everyone pull the people up and then it was a great thrill going on the swing.  Karlee and Jennifer went to make a wreath, which is still hanging on our front door.  They then had enough time to head over to the Spa and get Karlee’s nails painted and for Jennifer to have a massage.  We then all went to make bracelets which we now wear to symbolize camp and the healing process that takes place there.

After lunch all the parents went for a walk up to the top of SunSeeker cabin.  The views were only matched by the conversations shared between the parents.  It was very important to us to hear about others who had gone through similar situations.  Everyone at camp can relate to the words, “Your child had cancer,” and that forms a special bond.  It was enlightening to hear about all the success stories, to listen to all the challenges people went through and to make some great connections.

One of the families we were rooming with had a daughter who did not survive her journey with cancer.  It was incredible to see their attitude and optimism even after something so terrible happened.  It showed us how important attitude is and that if they can thrive when something like that happens; we could get through anything.

Saturday night was a great dance and party.  Everyone had a very good time dancing, enjoying the fire and spending time with the other people.  After the kids were in bed a bunch of parents again got together and sat around and just talked.

Sunday morning was a time for some family games and then we were on our way home.

October has so far been uneventful on the treatment front.  We have now stretched out our clinic days to every 10^th day and we have only had to make a few trips to the hospital for fevers.

Mary arranged for us to get tickets to a Hitmen game.  The seats were great and the kids enjoyed going over to the entrance to see the players come out and following Farley the Fox around the arena.  They both got to give Farley a great big hug.

Mary also got us tickets to see the Wiggles.  We jumped at the chance for the kids to see the Wiggles and were not disappointed.  The kids spent the majority of the concert dancing, singing and jumping around.  The Wiggles even managed to entertain the adults in the audience.

The benefit that the KCCFA brings to kids and families cannot be measured.  When we were first in the hospital talking about camp, starting the beaded journey, pizza night and coffee time all helped to keep us busy with other things.  This allowed us to focus on other fun and exciting things and prevented us from sitting there and worrying about leukemia.  The beaded journey is a fun way to commemorate hospital visits, clinic days and special events for the kids.  They enjoy threading the beads on and looking at the journey.

Sending Ryley to camp just over a week after Karlee was diagnosed was incredible for everyone.  It allowed Ryley to get away from the stress of the hospital and gave him a chance to go away and be a kid.  He had such a great time there and is looking forward to going again next year and seeing the friends he made this year again.  Camp also gave us an opportunity to focus on Karlee and getting through those first couple weeks and the first clinic visit and transfusion without having to entertain Ryley.

Being given tickets to events is great for the whole family.  Being offered tickets a few days in advance is great because we can have a good idea if Karlee will be able to attend an event.  Buying tickets month in advance is difficult now because we never know if Karlee will be in the hospital, will have low counts or will not be feeling well enough to attend due to the treatments.  Being able to go to stuff like this makes us feel like a normal family and allows us to forget about everything that is happening for a few hours.

Family camp was by far the best event the KCCFA has put on yet.  The camping activities were great and the kids enjoyed meeting and playing with the other kids, but the connections that we made as parents are invaluable.  Being able to sit down and talk to someone who has gone through the exact same thing as you lets you know there is hope.  It is also reassuring to talk to people who have made it through other cancers.  Everyone out there offered support and words of encouragement and helped put everything in perspective.  As strange as it sounds I also took a lot of strength from the families who had lost a child to cancer.  To see their strength and attitude towards the cancer and life in general was a huge inspiration to me.  The staff and volunteers at camp were excellent.  They allowed the parents to spend time without the kids and helped with anything we needed.  I hope that when we are a little further in our journey we will be able to inspire other parents and help them get through their own battles.

We are really looking forward to some of the events that are coming up.  Karlee is really starting to miss some of the socialization that she used to get.  She is very excited about the Halloween party and a chance to spend some time with other kids.  Both kids are excited about going to Culinary Kids and getting to cook some food and then eat it.

One of the topics we were asked to speak about is, “How much is too much.”  This is really hard to answer, especially being so new.  I know the first time we were offered the chance for Ryley to go to camp the first question I asked was, “How much?” and wondered if we could afford to send him.  Accepting charity is difficult, but at the same time we would never be able to afford to do some of this stuff and deal with reduced work hours, parking, prescription and other costs that come with cancer.  The camps, the free tickets and the events are all great and don’t seem to be overly extravagant.  From the people we have met so far through the KCCFA I think most of us would speak up if we felt the events or promotions were getting out of control.

I can only speak for us here, but I know we are trying to give back to the KCCFA.  We have encouraged people to support the KCCFA with their charity dollars.  Additional Jennifer makes slippers that she sells at craft fairs and through custom orders and she is donating $5 per pair of slippers to the Kids Cancer Care Foundation.  We also spoke with several families at camp who are volunteering their time at various fund raisers the KCCFA puts on.

We decided right after diagnosis that the only way we would get through this is to keep a positive attitude and try to pass that attitude on to everyone we speak with.  We have never asked “Why us or why Karlee.”  There is really nothing that that question can accomplish that is positive or helpful.  Everything we have written in our blog and posted on social networking sites has always been very positive.  We have received tremendous support from our church, our friends, our community, the Alberta Children’s Hospital and the Kids Cancer Care Foundation of Alberta.

As a way to say thank you to people who have done various things for us we are giving out “Hope Stars”.  We would like to ask Christine McIvor and Jack Perraton to join us.  On behalf of our family we would like to present you both with Hope Stars as a thank you for everything the KCCFA has already done for us this early in our journey.

Thank you for the opportunity to speak to all of you and more importantly thank you for everything the KCCFA has done for families of cancer patients in Alberta.  Does anyone have any questions for us?