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.
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 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.
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.
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.
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.
S
o 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.
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 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.
