Hair Loss

With each Chemotherapy drug there is about an 80% chance that the patient will lose their hair.  Karlee made it through almost all the drugs before it happened to her.  Doxorubicin was the drug that sparked Karlee’s hair loss.

Her hair loss came on very suddenly today.  Overnight she didn’t lose any hair on her pillow, but when she go up this morning Mom noticed that after holding her for a while that Mom was covered in hair.  Around noon Karlee was running her fingers through her hair and started pulling out some pretty impressive clumps of hair.  She stood in the middle of the floor playing with her hair with a big grin on her face and Dad standing there with the camera taking pictures.  We quickly decided that it was time to shave her head instead of letting her hair start to look like a disaster.  We had talked to Karlee from the start of this journey about her losing her hair.  She was looking forward to shaving her hair when it started to fall out so it was not a traumatic experience.
 
We dug out the clippers and very quickly had all her hair laying on the floor in the kitchen.  She was really good about getting her hair cut and Ryley was really interested in watching the hair come off.  She had a quick bath to wash the hair off and was quickly telling us she was beautiful.  Fortunately she has the head to be bald… just like her Dad.

We spent a little time this afternoon working in Ryley’s closet.  We added 6 new shelves down one side and removed the hanging shelves that never worked as well as they should have.  Once we finished up the closet looked much better and his clothes were easier to get at.

Boxing Day and Seussical

Today was a great Boxing Day!  It was relaxing not having to run out and try to find deal on stuff we really don’t need.  We spent a lazy morning at home with Karlee starting to feel very tired most of the morning.

After lunch we headed over to the “Secret Skating Place,” as Ryley calls Lake Bonavista.  He was very upset when he found that not just anyone could go skating there, but that you had to be a member.  We explained to him that Grandma is a member and she could bring guests to go skating.  We headed out on the lake right away and quickly remembered that skating on lake ice is not like skating on flooded ice.  Ryley very quickly tired himself out while Karlee was having a great time being pulled in the sleigh.  Mom and Ryley took the short cut while Dad and Karlee went all the way around.  Dad did a bunch of laps on the flooded area at the top which was much smoother and easier on the legs and hips.  We will have to take Ryley back at night when they have the Christmas lights on and the fire pit going.

Boxing Day night was a great evening as the KCCFA had gotten us tickets to Seussical the Musical.  We went down to the Martha Cohen Theatre in downtown Calgary and had a wonderful evening.  The show was very exciting and action filled.  The kids loved all the action and the singing and dancing.  We were right beside one of the catwalks so they were running beside us the entire night.  Ryley was riveted and loved watching everywhere.  Karlee enjoyed the performance, but once again was very tired.  She watched a good part of the show laying in Mom’s lap, but she always managed to clap at the correct times so she must have been paying attention.  Everyone had a great evening and it was nice to get out!

Merry Christmas

Merry Christmas to everyone!!  I hope everyone’s Christmas was as good as ours!


Last Tuesday was another clinic day.  Since everyone was off for vacation Ryley really wanted to go with Karlee to the clinic.  He had never seen her get accessed and he really wanted to see pink pee.  So about 8am on Tuesday morning we all headed up North.  Mom, Karlee and Ryley were going to go to clinic day and Dad was going to run all over the place to deliver popcorn and do some other running around.  Ryley continued to show his phobia of needles and didn’t want to watch Karlee get accessed (he hid under the table).  For a clinic day it went pretty quick and Karlee’s counts are still going good.  When Dad showed up there was a huge pile of crafts they had been working on and Karlee was just getting the last of her chemotherapy drip.  After the clinic we headed to the Kids Cancer Care Foundation office to deliver some slippers and scrubbies to one of the staff.


Karlee has been in a pretty stubborn mood for the past few days.  She doesn’t want to listen and seems to take great joy in bugging everyone around.  This is probably due to the steroids that she was on and will be starting on again on Wednesday.  We have been told that when they are on this one week on, one week off pattern it is like they don’t really go off them.  By the time they clear their system they are right back on them and the effects kick in right away.  December 29th should is her last day on them for this go round so hopefully she will return to normal a week or so after that.


Wednesday morning we headed downtown to deliver the last of the popcorn and for Mom and Dad to give blood.  Karlee has done excellent only needing one blood transfusion since this journey started, but knowing so many kids who regularly need blood makes it more important for us to donate when we can.  As always I would encourage everyone who is eligible to donate… it is a quick and painless process and they feed you pretty good afterwards.


Thursday we went skating as a family for the first time this year.  We went over the the Millrise community rink and Karlee did excellent.  Ryley had a great time getting into a pickup game with a couple of other kids and Mom even got her skates on. 


Christmas eve was another busy day.  In the morning we noticed that Karlee wasn’t looking too good.  She was very white and had large red circles under her eyes.  The last time she looked like that she ended up getting a blood transfusion.  We called up to our primary nurse and chatted with her to see what we should do.  She agreed with us that we really didn’t want to go to the hospital on Christmas Eve if we could avoid it.  She suggested that instead of coming in we just monitor her and call if there are any problems.


We started off with a little house cleaning and then headed over to the Shawnessy rink for a little more skating.  This time they were flooding the rink so it took a little while to be able to skate, but Karlee still did really good and Ryley liked playing shinny and practicing some of his skills.  After that we had to run out and pick up Grandma’s Christmas present – nothing like leaving it to the last minute.  When we got home we checked out the time of Ryley’s hockey game and found out we were running very late.  Ryley quickly got his equipment on while the rest of us got dressed for church.  They kids had a good game against a team that will now be in our division.  The game went much better than most of the games we have played with our goalie getting his first shutout and the kids scoring a bunch of goals.


Right after the game we headed to Grandma’s church for the Christmas Eve service.  Uncle Randy, Aunt Catherine and the boys were there too.  In past years they have always had the kids dress up in costumes and be part of the service.  This year they had them put some the nativity scene together.  Not as exciting as past years, but still a good time.  Afterwards we went to Grandma’s and had some Chinese food and then went home to open the kids Christmas Eve gifts.  They always get to open PJs and books on Christmas Eve from Mom and Dad.  Karlee then went to bed since she was tired and starting to melt down.  The rest of us sat by the fire and read the Christmas Story and then Ryley went to bed too.


Christmas morning started a little earlier than we planned or would have liked.  Ryley was awake about 5:30 and we told him to go back to bed until 7.  Then Karlee was awake at 5:45 to go to the bathroom and then she went back to bed.  Around 6 Jennifer sat up and asked, “Where is Karlee?”  We quickly determined that Karlee was already downstairs so we got her back upstairs and opened stockings.  We then headed downstairs to see what Santa had delivered to everyone.  Santa was again good to all of us!


After opening gifts we headed over to Grandma’s for 9:15 or so to open gifts with the family.  Again more great gifts and an excellent brunch.  Randy, Catherine and the boys left shortly after brunch to spend some time with her family while we spent the day at Grandma’s.  Ryley had fun playing with his Spy Gear and testing out his new snowboard while Karlee was mostly tired, but did have fun sledding.  Mom captured all the action on her new camera (that actually focuses).  This is the second year in a row that Mom has got a new camera for Christmas.  The Nikon from last year didn’t take one good picture the whole year.  Of course it was after we had it for a few weeks that we started reading the reviews and determined that it wasn’t the best camera.  This year the Olympus was researched a little more thoroughly and the pictures so far have been excellent.  Everett and Karlee spent a lot of time following Ryley around!  Supper was excellent as always and afterwards we drove around and looked at a few Christmas lights.


The steroids have definitely kicked in for the food intake.  Karlee seems to want to eat, eat and eat now.  Unfortunately (or fortunately) she is only eating small amounts each time, but wants to eat constantly.  About 45 minutes before the turkey was done on Christmas Karlee was going to have a mental breakdown waiting for the food.  We think the aromas and atmosphere just got to her and she really needed to eat.


Boxing Day is going to be relaxing this year.  We have no plans to do any shopping this year and plan on staying at home and relaxing.  Karlee is again looking pretty pale and is tired, but we are hoping to make it through the weekend prior to having to take her to the hospital.  Tonight we are going to Seussical the Musical with tickets from the KCCFA.


We hope you all had a great Christmas and enjoyed spending time with friends and family.

2nd round of Delayed Intensification

Friday was another bad day for Karlee.  She again vomited in the morning, but it was a lot pinker as opposed to the dark purple so she is still getting the Doxorubicin out of her system.  When Mom got home from the bus run her and Karlee got ready to head up to the clinic for Karlee's PEG shot. On the drive to the hospital Karlee again vomited.  (Note to self: make sure we always have extra clothes in the car!!).


When they got to the unit Dr. Singh wanted to check Karlee over and monitor her before they decided if they could proceed with the treatment.  It ended up being a long day for them, but she did get the shot in the leg. Karlee's weekend wasn't too bad, but she really wasn't back to 100% until Monday.


Saturday Ryley went to Alex's birthday party for a movie party.  The kids all had a great time and then Ryley was on his way to his last hockey game of this round.  In the new year they are moving down a division.  With the improvements the team has made so far this year they should see a lot of success in the new division.


Sunday was an iffy day for Karlee.  She wasn't feeling her best, but was still improving.  We decided to stay home from Church in order to allow Karlee to rest a little more.  This allowed us to finally make it to a birthday party at Randy and Catherine's.  We have missed the last 2 parties due to Karlee having episodes or being in the hospital.  Everett had his 4th birthday party and everyone had a great time.  All 4 cousins had a great time playing downstairs.



Tuesday was another clinic day, but without a procedure.  The new nurse Karlee had missed the fact that she needed to have hydration prior to getting her chemo.  Thankfully one of our regular nurses noticed and made sure she got fluids.  Since the chemotherapy was late coming up she wasn't delayed.  Jennifer took in some Nuts and Bolts and some Carmel Chex that Grandma made.  All the nurses and doctors loved it and polished it off in record time.


Tuesday night was the final Beaver meeting of the year.  We did a little Christmas party and had a couple of guest speakers talk about different holiday traditions.  I think all the kids had a good time and I know all the leaders are looking forward to a few weeks off and then an easier schedule to start January.


Wednesday was a good day for Karlee.  We were concerned that with the reaction she had with the new chemo that she would again have a rough night.  Thankfully it seems to be a one time reaction or it could have been the dose of MTX in the spine.  Wednesday night we had out lifegroup potluck Christmas dinner.  We had a good meal with great friends.  About half way though (right before the kids gift exchange), Dad had to run off and be a Santa helper for the cubs.  The kids loved seeing Santa and sitting on his lap and getting a gift.  The leaders all got to spend a little time with Santa and then they all piled on followed closely by the kids.  When I was done there I figured it might we fun to show up at the lifegroup in the costume.  The kids didn't know what to think; they all quickly figured out who Santa was, but still enjoyed it.  The parents enjoyed it too and everyone got a picture or two.


Friday night was the scout leader's party.  Grandma came over and babysat and we all had a great night relaxing with the other leaders.


Saturday was a little bit of a crazy day.  Ryley started his Okotoks hockey tournament with an 8:30am game.  Right after the game we headed back to Calgary for the Mason's Christmas party.  The kids always have a great time there with the clowns and their balloons.  We had a nice, kid friendly meal, and then Santa came.  Unfortunately the charity we were sponsoring this year had a lot of people who didn't show up.  The kids all had a great time and loved the gifts.  Since the lodge was going to donate all the extra gifts to charity anyway I asked if I could have a few for the family we were sponsoring (more on that later).  After the party it was a quick drive down to Okotoks for another hockey game.  We got to play in the new arena in town.  It was a beautiful facility and I think the kids really enjoyed playing there.


On the way home we made a few phone calls about the Gift of Hope that the Scouts were doing in conjunction with the Church.  We managed to get everyone organized to drop off all their stuff and for Lisa, Jared and kids to come over and help assemble everything.  The night before we got a call from the person at the Church organizing everything.  There was a family close by who had just lost everything they owned (including pets) in a house fire this past week.  They had been in a hotel, but were getting a rental house.  They had 3 young boys aged 3, 7 and 9.  We made sure they had lots of non-perishable food, enough fresh food for several meals, lots and lots of gifts for both the kids and the parents, some gift cards and some cash.  I then again pulled out the Santa suit and off we went to drop off everything to the family.  The kids were shocked to see Santa at the door and the 3 year old had a ton of questions about where I left the reindeer and why Santa was early and why I was in a car instead of a sleigh.  We kept bringing stuff in and I think Dad was a little shocked about what we could do to help them out.  It was a great experience for them as well as for us and our kids.

Sunday we were going to go to Church, but Ryley started with his "I'm not feeling good" and Karlee said she didn't want to go.  We did a little shopping and then came home and made some reindeer food for Ryley to give to his hockey team.  At 3pm we were down in Okotoks to have a team supper / pre-Christmas get together.  We had planned on doing a Christmas party on Sunday, but with the tournament and an extra game added it wasn't practical so we all went to BPs instead.  Afterwards we headed over to the arena for the team's last game of the year.  The kids all played incredible and were all hustling.  Ryley had his best game of the year by far... he was aggressive and played the puck several times each shift.  Afterwards they all got their medals from the tournament.  It was a really good time and the kids kept playing better each game.


Monday morning we figured it was time for Mom and Dad to do some Christmas shopping for each other.  We hit Mark's and then Chinook Centre.  The mall wasn't too busy yet and we managed to get most of our shopping done.


Tomorrow (almost today) is another clinic day for Karlee and Mom wants Dad and Ryley to do a bunch of running around and dropping stuff off to various people in the other end of the city.  Hopefully Karlee was a good day and we get everything done without getting too lost.

Purple Vomit and More Hospital Visits

Wednesday morning was an interesting morning for Dad.  Karlee woke up and came and snuggled with Dad in bed for a little while and then went back into her room.  Dad came downstairs and started to work when he heard Karlee fussing again.  When he got up there she was on her hands and knees in the hall and quickly started gagging followed shortly by vomiting.  It was a very dark purple vomit which was rather concerning.  Of course in the middle of this Ryley woke up, opened his door and everything was happening right there.  Dad got her cleaned up and settled downstairs and then went to deal with the mess.


Of course it couldn't be that easy... as they were heading downstairs Dad noticed some dried blood on her blanket and on closer inspection around her nostril.  So when Dad went up to clean up the vomit (still dark purple on the carpet) he checked out Karlee's room and found out that sometime during the night she had a nose bleed.  A good portion of the next little while was spent cleaning and doing laundry.  Karlee did vomit once more into the garbage can and wasn't feeling that good.  She spent most of the day on the couch or getting Mom to hold her.


Jo called back around 9:30 and told us the purple vomit was probably caused by the newest chemotherapy drug (Doxorubicin).  This drug is redish in colour and turned urine, vomit and even tears a colour between pink, red and purple.  Jo wasn't too concerned about her reaction so far, but did suggest we get our prescription for Ondansetron filled and give it to her as a preventative measure.  Ondansetron is a great anti-nausea drug that they use in the hospital when Karlee gets MTX (another chemotherapy drug).  We have filled the prescription twice so far and it has expired before we gave her a single dose, but we filled it again just to have it on hand.


Wednesday afternoon Karlee was again not feeling good.  We took her temperature and of course it was up again.  She hit 39.2 at one point so we again called the oncall oncologist and were instructed to bring Karlee up to the unit to have her looked at.  Once she was up there they took blood for a CBC and cultures and waited.  When they got the results back Karlee's numbers were good (in fact better than Monday), so they gave her some antibiotics and sent them home.  They got home a little after 1am so everyone was a little tired on Thursday.


Thursday morning Jo gave us a call and let us know that we should come into the clinic at 3pm to get Karlee looked at and get the second dose of antibiotics.  Karlee was still pretty down, but did have a few good times.  They had a very quick visit at the hospital with Dr. Singh.  They discussed possibly raising the threshold for Karlee's temperature so we aren't calling as often.  Dr. Singh felt she was looking ok considering what she was going through and with all the antibiotics she is on didn't feel she needed any more.  They were in and out within 30 minutes and home around 4pm.


Thursday night was the Christmas event at Ryley's school.  Instead of doing a concert they have the kids come in and decorate cookies and then go to the gym and sing carols.  Both kids had a good time decorating and eating the cookies and signing the carols.  We even got to do a new carol with actions.


Tomorrow morning Karlee is back at the hospital again for a PEG-asparaginase shot in her leg. It should be a fairly quick procedure with a hour of monitoring afterwards to ensure there is no reaction.  Mom keeps saying she wants to be out of there in 2 hours.  Hopefully tomorrow is a better day as the kids are supposed to be going to the Hitmen game and sitting in a suite with the Kids Cancer Care Foundation.

Fever, fever and more fever and then the start of delayed intensification

So last Monday (November 29th) Karlee had her heart tests and that was supposed to be her only visit to the hospital that week.  We had no idea how wrong that was.


Tuesday afternoon Karlee started to run a fever again.  We called the oncall Oncologist again and were told to bring her up for some antibiotics.  Dad drove home from Beavers and Mom and Karlee drove him back so they could take the car up to the hospital.  As always they accessed her port and took blood for a CBC (Complete Blood Count) and cultures.  Once they got those results back they gave her a dose of IV antibiotics to try to kill whatever keeps causing her fever to go up.  Fortunately her counts were acceptable, but starting to get a little low, so they didn't have to keep her.  Mom and Karlee were home just before 11 that night.  Late nights make for a cranky Karlee going to bed that night and the next day.


Wednesday we called Jo (our primary care nurse) to see what the plan for today was.  Normally when they give IV antibiotics they like to give back to back doses separated by 18 to 24 hours.  Jo wanted us to come back at 6pm tonight to the unit (the clinic closes around 4pm).  Mom went again in case her ANC had dropped below 500, in which case they would admit her.  This time was much quicker and they were home around 8pm.  Karlee's ANC has held steady at 900.  This is a time to be concerned, but not to panic.  Below 1,000 we need to be careful about close exposure to other kids who could have a cold or virus.  If Karlee drops below 500 she would be considered neutropenic and would be admitted to the unit and placed in isolation.


Thursday was the Southland Kids Christmas Party at the Calgary Zoo.  For people not in Calgary the Zoo does and event in November and December called Zoo Lights where they put 1.5 million lights and displays around the zoo.  We bundled up and headed out to the zoo.  First up was supper and a visit with Santa.  Supper was hotdogs and veggies with cookies and hot chocolate.  Sitting on Santa's knee is always a treat and getting a little gift is great too.  Next we headed outside to the giant slide for the kids to have some fun.  We walked around a little and then ended up at the hay, igloo building, the giant balls and snowman bowling.  The kids loved these activities as they do every year.  The only difference this year was Karlee couldn't play in the hay.  It is too easy for her to damage her port by running around and jumping/falling.  We walked around a little more and then found that they had built a new carousel since the last time we were there.  Of course the kids had to ride on the various animals.  After a little more walking around we headed home exhausted and ready for bed.



Friday morning brought more fevers.  The first call to Jo actually didn't result in us having to head up as the fever was only in the 38.3 range and she wanted to check with the oncologist first.  Of course while we were waiting for her to call us back her fever shot up to 39 degrees.  We called Jo again as this is getting to the scary numbers.  She wanted us to come in as soon as we can.  This time it was Dad's turn to go and sit around and entertain Karlee.  As always by the time we got to the hospital the fever was back down to the normal range.  They again took some blood and we got to see Dr. Singh.  It has been a while since Dad has seen him, since Mom does most of the clinic days and evenings and weekends are a lottery as to which doctor you get to see.  This time they decided to send us home with oral antibiotics with instructions to check in the next morning at 9am.


Friday evening we took the kids swimming in Okotoks to get them out and let them burn off some steam.  They both had a great time swimming and playing in the water.  We have decided that swimming isn't that risky for Karlee since she really isn't in close contact with anyone and we let her decide what her limits are.


Saturday morning Ryley had a hockey game half way across the city.  They were playing the undefeated team in their division.  The kids played a great game and held their own in the 3rd period when we normal start to fade.  We did end up losing 9-0, but we looked pretty good and the kids all had a great time.  Jennifer checked in with the oncall oncologist and they said to just continue monitoring her.  Karlee's fever kind of went up and down and up some more for the rest of the day so we were on alert to head up to the hospital all day.


Sunday was another hockey practice at 6:30am.  This one really seemed hard to get both Dad and Ryley up and ready for.  We made it, but were very tired when we got home.  Sunday was also the day we started to do the inside Christmas decorations.  We got the tree up and partially decorated before we had to head to Grandma's.  We dropped the kids of early so we could head out and do some Christmas shopping.  Uncle Randy took them sledding and Grandma helped to entertain them while we were out.  We returned and had some great chili and then headed home to sleep!


Tuesday morning Mom and Karlee headed to the Alberta Children's Hospital and the clinic for her first day of delayed intensification.  This is supposed to be the toughest phase of treatment for her.  We are expecting her to lose her hair pretty quickly during this phase.  She had a lumbar puncture today to inject more chemotherapy into her spinal fluid.  She then got 2 different chemo medicines through her port.  They were out of the hospital by 2 in the afternoon.  On the way home they stopped at the KCCFA offices to drop off 11 pair of slippers that the ladies there had ordered.  She also picked up a voucher for Seussical the Musical on boxing day.  The KCCFA is also going to be putting the kids up in a suite at the Hitmen game on Friday this week.  We are going to get tickets to the game, but only the kids get to sit in the suite.


Karlee was a little cranky tonight, but we are hoping that is due to just being tired after a long day.  Tomorrow will be a very telling day to let us know how she is handling this round of chemotherapy.  Time to go keep working on our Christmas letter and cards.


Thank you everyone for your prayers, thoughts, support and well wished.

Cool Yule and more tests

This weekend was a little crazy, but overall a great time for everyone.

Friday after work we headed down to Turner Valley for the Diamond Valley Christmas Market.  We were set up and ready to go in time for the start of the market at 4:30.  Dad and the kids headed to the Turner Valley Inn and had a nice supper while Mom stayed and manned the table.  Later Ryley and Dad went for a nice walk around town until the wind became a little much.  We finished off the night selling one pair of slippers in 4 hours.


Saturday morning was another total crazy day.  Ryley had hockey at 8:30, but we had to be there early as they brought in a skate sharpening machine and were doing all the kids, siblings and families skates.  Dad dropped everyone off at the arena and went over to Grandma's to drop off everything for the Willowridge Craft Fair.  Grandma was going to set up and spend some time running the show in the morning.  Dad then headed down to Turner Valley for the second day out there.  Between Grandma and Mom Willowridge went pretty good with a few sales, but Turner Valley was a bust again.



Sunday night was Cool Yule at Theatre Calgary with the Kids Cancer Care Foundation of Alberta.  We started out with some kid friendly appetizers; jelly, tuna, egg sandwiches, slider burgers and corn dogs.  We then headed upstairs so the kids could spend a little time with Santa.  They had a wonderful visit with the big guy and got a stuffed meerkat.  We then went down to get a family picture taken and then the kids wanted to get their faces painted.  While they were waiting for the face painter Dad went and grabbed us seats for A Christmas Carol.  We were in the first row of the balcony so we had a great view.


The performance of A Christmas Carol was incredible.  The show was well done, but also very exciting with lots of effects and fun.  Ryley loves live shows and can't wait for the next one.  This was Karlee's first live performance and she behaved very well.  There were many kids a lot older than her who were a lot more disruptive (including some adults).


This week is one of Karlee's off weeks but that doesn't mean she gets off without a trip to the hospital.  Today was a couple of test to get a baseline for her heart.  The next round of chemotherapy can damage her heart so they want to have something to look back on to allow them to determine if there has been any damage.  She had an ECG, an Echo Cardiogram and her weekly CBC (Complete Blood Count).  The ECG involved hooking up a bunch of electrodes and monitoring her heart.  The Echo is basically an ultrasound on her heart.  They are hoping that with the low dose that Karlee is getting that there will not be any damage, but it is important to have a baseline to compare future tests to.


Ryley was a little concerned that Karlee had to get a poke in her arm today instead of having her port accessed.  We had to explain to him that having her port accessed is more traumatic than just getting a poke in her arm.  It is tough for someone who hates needles to understand that Karlee doesn't mind getting poked in the arm or in her port.

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?