This morning Karlee had her CBC at the South Calgary Lab. The lab was empty this morning so she actually got in early – first time that has happened! JoJo was off today so Greg called us with the results around 1pm. Karlee is still neutropenic as her ANC has dropped down to 300. All her other counts were in the normal range. Due to the low ANC Karlee has now been delayed as she is not allowed to start the next phase of treatment until her ANC is over 750. There isn’t much we can do to get her ANC up other than encouraging her to sleep and rest enough and eat a balanced diet; basically everything that she should be doing anyway. So instead of starting the 2nd interim maintenance phase tomorrow she is now waiting until next Monday to again have another CBC. If her counts are up at that point she will start on Tuesday February 8th. This now pushes us to starting maintenance into April. It is hard to believe that we wound now be in maintenance if they hadn’t added 2 months to the protocol late last year.
With Karlee being neutropenic she is again under house arrest. Thankfully we don’t have a lot planned this week so staying home shouldn’t be a big deal. The one issue we are going to run into is the weather is supposed to start to warm up and Karlee is going to want to get out and play.
Karlee seems to be developing a little bit of a cough and it looks like she might be coming down with a cold. It will be interesting to see what happens now since she is allowed to have almost no medicine. If she spikes a fever we will probably be headed for admission to the unit. Hopefully she can fight this off and stay out of the hospital!
The Skate-A-Thon is still going ahead strong. We are looking for additional kids to get pledges and come out and skate. We are also looking for donations of prizes for both kids and adults to be used as give aways for the top fund raisers and for draws. If you are interested in skating or donating let us know (ronlewis@telusplanet.net). You don’t need to be from the community to participate in the fundraiser. Thank you to everyone who is getting behind this and making it an incredible event.
Monday, January 31, 2011
Sunday, January 30, 2011
Hockey and More Hockey
Karlee has been enjoying her little bit of freedom and has been going on the bus run with Mom the last few mornings. We don’t know if this is related to the treatment, but Karlee has been getting up very early every morning and generally not napping in the afternoon. Many mornings she is up between 5:30 and 6:00. Before Christmas she was routinely sleeping until 7:30 or so. We have heard of other cancer patients not sleeping well either, so hopefully this is something that will pass once Karlee gets into maintenance.
The reach of the information for the Skate-A-Thon continues to amaze us. We have lots of people talking to us about it and are getting a lot of hits on the blog from the Hockey Calgary and the Shaw Meadows websites. Lots of people have expressed interest in joining with the team and getting pledges and skating. If you are interested (or your children) let us know and we can get you in touch with the right people. Drop us an e-mail at ronlewis@telusplanet.net.Sunday morning Dad headed over to a friends to borrow his band saw for a couple of hours. He cut out a bunch of “Hope Stars” to continue to give to everyone who keeps supporting us in so many great ways. Sunday afternoon we headed to the Hitmen game with Ryley’s hockey team and most of the other Novice hockey players in Calgary. Fortunately all the kids and parents seemed to have a good time because the Hitmen didn’t play a very good game and lost 5-1 to Prince Albert.
Tomorrow morning Karlee has to hit the lab again for another CBC. This is the first time Dad has been concerned that the counts might not be high enough for her to go for treatment on Tuesday. She needs to get her ANC up to 750 otherwise she will be delayed until her counts come back up. Most kids are delayed several times during treatment, but so far Karlee hasn’t been affected by that.
Wednesday, January 26, 2011
Photo Shoot and New Counts
Monday after work we headed up to Phoenix Photography to do a photography session with Mike. Mike was looking to do some work with the KCCFA and has donated a photo shoot and a few pictures. The KCCFA asked us if we would be interested in being the first family to try this and we thought that was a fun idea.
We arrived a little late as the traffic in the North wasn’t good. It took us over 45 minutes to get up to Castle Ridge with the new construction on 36th Street and 64th Avenue causing a pretty good delay. Once we arrived we went downstairs to the studio and after a quick chat Mike and Jo got right to taking pictures. It was a great experience and they took some excellent pictures of us as a family, the kids, Mom and the kids, Dad and the kids and even Mom and Dad. It was a fun experience with lots of fun and exciting poses. If you are interested you can look at the pictures on the following website: http://thelewisfamily.myphoenixphoto.com/. If you are looking for some neat and fun photo’s check out Phoenix Photography at http://www.myphoenixphoto.com/.
Tuesday night was another fun Beaver event. We had Kullinary Kids come and visit us and make some fruit smoothies and give us some nutrition information. This kids all seemed to have a great time and enjoyed the treat. Next week we are back to the school with normal meetings.
Wednesday morning Karlee had her CBC (Complete Blood Count) as the South Calgary Lab. JoJo called us a little after noon and let us know that her counts were better, but still need to come up more. Her hemoglobin and platelets are both really good, but her ANC is still low. Currently she is at 500 which still puts her at great risk of infection if she is exposed to anything. So we have taken her off of house arrest, but will only take her to places we need to. Anywhere that she has close contact with anyone is still off limits. She needs to get her ANC up above 750 by next Monday so she can continue with the next phase of treatment.
Wednesday evening Jennifer went to a team meeting about the Skate-A-Thon for both Karlee and the KCCFA. The Skate-A-Thon is moving ahead at full speed and it sounds like it will be a great event. They are going to have prizes for the kids who raise the most money and are trying to get additional sponsors. If anyone is interested in donating prizes or anything else please let me know at ronlewis@telusplanet.net. We have also confirmed that Ryley is allowed to get pledges. If you are interested in making a pledge let us know. Coach Joe has also confirmed that C-JAY is going to do some on-air promotion the week prior to the event. It is very humbling to realize how many people are willing to do something for Karlee and for the KCCFA. We, as a family, would like to say a huge thank you to everyone involved in this endeavour.
If anyone who is reading this blog would like to be notified when I post a new update please let me know at ronlewis@telusplanet.net.
We arrived a little late as the traffic in the North wasn’t good. It took us over 45 minutes to get up to Castle Ridge with the new construction on 36th Street and 64th Avenue causing a pretty good delay. Once we arrived we went downstairs to the studio and after a quick chat Mike and Jo got right to taking pictures. It was a great experience and they took some excellent pictures of us as a family, the kids, Mom and the kids, Dad and the kids and even Mom and Dad. It was a fun experience with lots of fun and exciting poses. If you are interested you can look at the pictures on the following website: http://thelewisfamily.myphoenixphoto.com/. If you are looking for some neat and fun photo’s check out Phoenix Photography at http://www.myphoenixphoto.com/.
Tuesday night was another fun Beaver event. We had Kullinary Kids come and visit us and make some fruit smoothies and give us some nutrition information. This kids all seemed to have a great time and enjoyed the treat. Next week we are back to the school with normal meetings.
Wednesday morning Karlee had her CBC (Complete Blood Count) as the South Calgary Lab. JoJo called us a little after noon and let us know that her counts were better, but still need to come up more. Her hemoglobin and platelets are both really good, but her ANC is still low. Currently she is at 500 which still puts her at great risk of infection if she is exposed to anything. So we have taken her off of house arrest, but will only take her to places we need to. Anywhere that she has close contact with anyone is still off limits. She needs to get her ANC up above 750 by next Monday so she can continue with the next phase of treatment.
Wednesday evening Jennifer went to a team meeting about the Skate-A-Thon for both Karlee and the KCCFA. The Skate-A-Thon is moving ahead at full speed and it sounds like it will be a great event. They are going to have prizes for the kids who raise the most money and are trying to get additional sponsors. If anyone is interested in donating prizes or anything else please let me know at ronlewis@telusplanet.net. We have also confirmed that Ryley is allowed to get pledges. If you are interested in making a pledge let us know. Coach Joe has also confirmed that C-JAY is going to do some on-air promotion the week prior to the event. It is very humbling to realize how many people are willing to do something for Karlee and for the KCCFA. We, as a family, would like to say a huge thank you to everyone involved in this endeavour.
If anyone who is reading this blog would like to be notified when I post a new update please let me know at ronlewis@telusplanet.net.
Sunday, January 23, 2011
Miscellaneous Updates
There have been a few things we have wanted to update everyone on for a while now, but there always seems to be something more important to blog about. While tonight is the night to play a little catch-up with a few things.
First we are going to start with a little Ryley update. Today was not a good day for him. He woke up about 6am complaining that he wasn’t feeling good and shortly there after he started vomiting about every 15 minutes. By around 9am he was down to every hour which was a great improvement and around 2 or 3 it seemed to settle down and mostly stopped. The poor little guy spent the entire day laying on the couch in a fair bit of discomfort. He was sore and stiff from the flu as well as from snowboarding all day yesterday. He had a soak in the tub and was in bed by 7:30 tonight. Hopefully he makes it through the night without any major problems. We also managed to get the Christmas lights down today. We still have all the blow-ups stuck in the middle of the yard that are frozen in the ground. That will be a challenge for another day once it has warmed up a little more.
Karlee’s Beaded Journey
In one of our earlier posts we talked about Karlee’s Beaded Journey. This is where she gets a bead to represent all the different parts of treatment and events that happen. The KCCFA supplies all the beads to the Child Life Specialists at the hospital who them give them to us as we request them. Karlee’s journey has grown to almost 5 feet, 6 inches long and is a great way for us and her to look back and remember everything we have gone through already. Today we did a quick count of all the beads she has so it seems to be worth sharing.
42 visitor beads (this would be higher, but she hasn’t spent much time in the hospital)
42 clinic and hospital trips
41 doses of chemotherapy
35 port access beads
27 poke beads (normally blood tests)
10 lumbar punctures
9 tests (x-ray, ultrasound, ECG, echo)
7 holiday or special events
6 episodes (before diagnosis)
5 KCCFA events
4 admission beads
4 season beads
3 emergency room visits (before diagnosis – now we just go to the unit)
2 day passes while admitted
2 blood transfusions
1 surgery (not a procedure, but actual surgery)
1 port insertion
1 hair loss
1 dental visit
1 diagnosis
It is really shocking when everything is put into numbers as it lets you know how much Karlee has been through just under 6 months and how positive she has been through the entire process. Ryley is also keeping a beaded journey about the various visits he has to the hospital and the major events that happen to Karlee. His isn’t near as long, but is still a great reminder of everything he has gone through too. It is important for us to remember that Karlee might be the one with cancer, but this journey is just as hard on Ryley in many ways.
Treatment protocol and phases
When Karlee was first diagnosed they did a number of test to determine what type of leukemia she had, acute lymphoblastic leukemia, and to determine her risk level. Everything came back favourable as there was no blast cells in her spinal or cranial fluid and the chromosomal analysis was also favourable. At this time we were told Karlee would undergo 6 months of treatment and 2 years of maintenance. We started the induction phase of treatment and Karlee was a rapid responder, meaning she went into remission very quickly. This determined the course of treatment for the next 5 months. The next phase of treatment was 1 month of consolidation, followed by 2 month of interim maintenance and finishing with 2 months of delayed intensification. During our interim maintenance they informed us that the protocol had been changed and that standard treatment was now 8 months. Since we were still in treatment they would be adding 2 additional months of interim maintenance to the end of her 6 months.
One of the factors in Karlee’s favour was that she is a girl. Boys have 3 years of maintenance instead of 2 years due to a higher risk of reoccurrence.
KCCFA (Kids Cancer Care Foundation of Alberta)
The KCCFA has been an incredibly supportive organization throughout our entire journey. They got Ryley into a week long camp only a few days after Karlee was diagnosed, provided numerous pizza nights in the hospital, provided family camp for all of us and have provided numerous events to try and make us feel like a normal family. Jennifer decided early in this journey to donate $5 per pair of slippers to the KCCFA. During the numerous craft fairs we were at we had several people give donations to the KCCFA when they heard Karlee’s story. Jennifer also made bracelets that we sold for a donation to the KCCFA. After all that was said and done this year Jennifer will be donating $540 back to this incredible organization.
We are thrilled that a portion of the proceeds from the Skate-A-Thon for Karlee will be going to this organization.
First we are going to start with a little Ryley update. Today was not a good day for him. He woke up about 6am complaining that he wasn’t feeling good and shortly there after he started vomiting about every 15 minutes. By around 9am he was down to every hour which was a great improvement and around 2 or 3 it seemed to settle down and mostly stopped. The poor little guy spent the entire day laying on the couch in a fair bit of discomfort. He was sore and stiff from the flu as well as from snowboarding all day yesterday. He had a soak in the tub and was in bed by 7:30 tonight. Hopefully he makes it through the night without any major problems. We also managed to get the Christmas lights down today. We still have all the blow-ups stuck in the middle of the yard that are frozen in the ground. That will be a challenge for another day once it has warmed up a little more.
Karlee’s Beaded JourneyIn one of our earlier posts we talked about Karlee’s Beaded Journey. This is where she gets a bead to represent all the different parts of treatment and events that happen. The KCCFA supplies all the beads to the Child Life Specialists at the hospital who them give them to us as we request them. Karlee’s journey has grown to almost 5 feet, 6 inches long and is a great way for us and her to look back and remember everything we have gone through already. Today we did a quick count of all the beads she has so it seems to be worth sharing.
42 visitor beads (this would be higher, but she hasn’t spent much time in the hospital)
42 clinic and hospital trips
41 doses of chemotherapy
35 port access beads
27 poke beads (normally blood tests)
10 lumbar punctures
9 tests (x-ray, ultrasound, ECG, echo)
7 holiday or special events
6 episodes (before diagnosis)
5 KCCFA events
4 admission beads
4 season beads
3 emergency room visits (before diagnosis – now we just go to the unit)
2 day passes while admitted
2 blood transfusions
1 surgery (not a procedure, but actual surgery)
1 port insertion
1 hair loss
1 dental visit
1 diagnosis
It is really shocking when everything is put into numbers as it lets you know how much Karlee has been through just under 6 months and how positive she has been through the entire process. Ryley is also keeping a beaded journey about the various visits he has to the hospital and the major events that happen to Karlee. His isn’t near as long, but is still a great reminder of everything he has gone through too. It is important for us to remember that Karlee might be the one with cancer, but this journey is just as hard on Ryley in many ways.Treatment protocol and phases
When Karlee was first diagnosed they did a number of test to determine what type of leukemia she had, acute lymphoblastic leukemia, and to determine her risk level. Everything came back favourable as there was no blast cells in her spinal or cranial fluid and the chromosomal analysis was also favourable. At this time we were told Karlee would undergo 6 months of treatment and 2 years of maintenance. We started the induction phase of treatment and Karlee was a rapid responder, meaning she went into remission very quickly. This determined the course of treatment for the next 5 months. The next phase of treatment was 1 month of consolidation, followed by 2 month of interim maintenance and finishing with 2 months of delayed intensification. During our interim maintenance they informed us that the protocol had been changed and that standard treatment was now 8 months. Since we were still in treatment they would be adding 2 additional months of interim maintenance to the end of her 6 months.
One of the factors in Karlee’s favour was that she is a girl. Boys have 3 years of maintenance instead of 2 years due to a higher risk of reoccurrence.
KCCFA (Kids Cancer Care Foundation of Alberta)
The KCCFA has been an incredibly supportive organization throughout our entire journey. They got Ryley into a week long camp only a few days after Karlee was diagnosed, provided numerous pizza nights in the hospital, provided family camp for all of us and have provided numerous events to try and make us feel like a normal family. Jennifer decided early in this journey to donate $5 per pair of slippers to the KCCFA. During the numerous craft fairs we were at we had several people give donations to the KCCFA when they heard Karlee’s story. Jennifer also made bracelets that we sold for a donation to the KCCFA. After all that was said and done this year Jennifer will be donating $540 back to this incredible organization.
We are thrilled that a portion of the proceeds from the Skate-A-Thon for Karlee will be going to this organization.
Saturday, January 22, 2011
Blood Transfusion and Skiing
We have had a very exciting and busy week again. It seems like more and more is going on all the time, both with Karlee and with our lives in general, but we are enjoying everything that is fun. At the same time we are rolling with the punches and surviving the stuff that isn’t so fun.
Wednesday after Ryley had his rough time playing goal during practice the managers of his hockey team asked me if we were ok with a fundraising skate-a-thon to support Karlee and the KCCFA. Jennifer and I talked about it and as hard as it is to accept help, when people are willing to go far above the call of duty, it is wonderful to know that so many other people care about our journey.
Thursday morning Jennifer and Karlee had to be at the hospital at 8:30 in the morning. Ryley was still feeling the after effects of playing goal the night before. Not only did his body hurt but he was feeling generally unwell as well so he stayed home from school all day. Karlee got a quick CBC and blood cross match when they got to the hospital.
The results of the CBC were less than encouraging as Karlee’s counts had dropped to their lowest level yet. Her hemoglobin was down to 58 which was a 9 point drop from the day before. The last time she needed a transfusion she was at 61. Most kids get a transfusion when they hit somewhere in the high 70s, but Karlee seems a little more resilient and they let her go a little lower. The blood transfusion will help bring Karlee’s hemoglobin count up, but will not affect her other counts. The most concerning count is Karlee’s ANC (Absolute Neutrophil Count) which has now dropped to zero. Everyone kept saying it would eventually hit zero, but Karlee seemed to have a special ability to keep it in a reasonable range (750 to 1500). This basically means that Karlee has no immune system at all right now so is very susceptible to any type of infection or virus. Due to this Karlee is now on house arrest and not allowed to go out around people until we get her next set of counts done on Wednesday January 26th.
Karlee needs her blood washed due to her IgA deficiency. Thankfully this time everything was documented fully and there wasn’t a difference of opinion between the oncologists and the hematologists. They washed the blood once which only takes about 2 hours and were pumping it into Karlee by 11:30. Everything went very smoothly and they were out of the hospital earlier than they expected.
Friday Ryley finally got his hair cut as it was definitely out of control. He was going to shave his head at the start of the Christmas break to support Karlee, but she didn't lose her hair until close to the end of the break and he wanted to have some hair when he went back to school. Because of that he didn’t get a pre-Christmas hair cut and then our schedule in January was a little hectic with the 4 days at the hospital each week. Friday evening Ryley had another hockey game. The team played a great game and won. We also got some information about the Skate-A-Thon. The event will take place on Sunday February 27th from 3:15 until 4:15 at the South Fish Creek Recreation Centre. Partial proceeds will also be going to the KCCFA. It really does leave you speechless when people are willing to do so much to help Karlee and us through this journey. So far Shaw Meadows has donated the ice and space on their website and Coach Joe has donated some gifts for the top money raisers. We have also had some kids from outside the team express an interest in skating and raising pledges with the Lightening Bolts! This is really going to be an incredible event.
Saturday morning Dad and Ryley headed to Canada Olympic Park for the 6th annual KCCFA Ski Day. Ryley was very, very excited to try snowboarding for the first time. We got there and the KCCFA, the volunteers and the COP staff were incredible. They looked after us from the moment we arrived until we hit the slopes. Many of the KCCFA staff were there as well as many of the volunteers we have met at other events. When we first arrived we met one of the Beavers in Ryley’s colony (and lodge) in the cafeteria. We were a little surprised when they said they were with the group through the doors and they were a little surprised when we told them we were too. Their son has been in remission for 3 years now.
Christine’s husband Ric McIvor was there as well. Dad was pretty impressed to meet him and get to chat with him for a few minutes. Right on time at 1 they had 2 instructors per group and a couple of volunteer show up and take the kids out for the super beginner lesson. Dad had to check that they started right at the beginning with teaching the kids how to put on the board as that was something Dad didn’t know how to do it.
Ryley headed off with the group and Dad went up the hill to get in a few runs. It is amazing how quickly everything comes back. It had been just over 8 years since Dad had the skis on and he only had one fall the entire day (and that one was when he had already stopped). The one thing that never changes is how uncomfortable and painful rented boots are.
After Ryley’s lesson Dad met up with him and we headed over to the slightly bigger bunny hill. The first magic carpet they were on during the lesson wasn’t working so they had to walk up the hill. We went over to the working magic carpet and Ryley did one pretty good run and when we got to the bottom the line for the very slow magic carpet was huge. Ryley had been asking to go on the chairlift since we got there so Dad again asked him if he thought he could do it and we were off to the chair. Ryley did great getting on and off the lift each time. He loved being at the top of the hill with all the big guys and did great going down the hill. We ended up going down the intermediate (blue) run each time as Ryley found it hard to go across the hill to get to the green run. Ryley did 5 runs down the hill each time getting better and faster. There are a few video’s of him going down on Facebook. Snowboarding is definitely something he wants to do again.
Wednesday after Ryley had his rough time playing goal during practice the managers of his hockey team asked me if we were ok with a fundraising skate-a-thon to support Karlee and the KCCFA. Jennifer and I talked about it and as hard as it is to accept help, when people are willing to go far above the call of duty, it is wonderful to know that so many other people care about our journey.
Thursday morning Jennifer and Karlee had to be at the hospital at 8:30 in the morning. Ryley was still feeling the after effects of playing goal the night before. Not only did his body hurt but he was feeling generally unwell as well so he stayed home from school all day. Karlee got a quick CBC and blood cross match when they got to the hospital.
The results of the CBC were less than encouraging as Karlee’s counts had dropped to their lowest level yet. Her hemoglobin was down to 58 which was a 9 point drop from the day before. The last time she needed a transfusion she was at 61. Most kids get a transfusion when they hit somewhere in the high 70s, but Karlee seems a little more resilient and they let her go a little lower. The blood transfusion will help bring Karlee’s hemoglobin count up, but will not affect her other counts. The most concerning count is Karlee’s ANC (Absolute Neutrophil Count) which has now dropped to zero. Everyone kept saying it would eventually hit zero, but Karlee seemed to have a special ability to keep it in a reasonable range (750 to 1500). This basically means that Karlee has no immune system at all right now so is very susceptible to any type of infection or virus. Due to this Karlee is now on house arrest and not allowed to go out around people until we get her next set of counts done on Wednesday January 26th.
Karlee needs her blood washed due to her IgA deficiency. Thankfully this time everything was documented fully and there wasn’t a difference of opinion between the oncologists and the hematologists. They washed the blood once which only takes about 2 hours and were pumping it into Karlee by 11:30. Everything went very smoothly and they were out of the hospital earlier than they expected.
Friday Ryley finally got his hair cut as it was definitely out of control. He was going to shave his head at the start of the Christmas break to support Karlee, but she didn't lose her hair until close to the end of the break and he wanted to have some hair when he went back to school. Because of that he didn’t get a pre-Christmas hair cut and then our schedule in January was a little hectic with the 4 days at the hospital each week. Friday evening Ryley had another hockey game. The team played a great game and won. We also got some information about the Skate-A-Thon. The event will take place on Sunday February 27th from 3:15 until 4:15 at the South Fish Creek Recreation Centre. Partial proceeds will also be going to the KCCFA. It really does leave you speechless when people are willing to do so much to help Karlee and us through this journey. So far Shaw Meadows has donated the ice and space on their website and Coach Joe has donated some gifts for the top money raisers. We have also had some kids from outside the team express an interest in skating and raising pledges with the Lightening Bolts! This is really going to be an incredible event.
Saturday morning Dad and Ryley headed to Canada Olympic Park for the 6th annual KCCFA Ski Day. Ryley was very, very excited to try snowboarding for the first time. We got there and the KCCFA, the volunteers and the COP staff were incredible. They looked after us from the moment we arrived until we hit the slopes. Many of the KCCFA staff were there as well as many of the volunteers we have met at other events. When we first arrived we met one of the Beavers in Ryley’s colony (and lodge) in the cafeteria. We were a little surprised when they said they were with the group through the doors and they were a little surprised when we told them we were too. Their son has been in remission for 3 years now.Christine’s husband Ric McIvor was there as well. Dad was pretty impressed to meet him and get to chat with him for a few minutes. Right on time at 1 they had 2 instructors per group and a couple of volunteer show up and take the kids out for the super beginner lesson. Dad had to check that they started right at the beginning with teaching the kids how to put on the board as that was something Dad didn’t know how to do it.
Ryley headed off with the group and Dad went up the hill to get in a few runs. It is amazing how quickly everything comes back. It had been just over 8 years since Dad had the skis on and he only had one fall the entire day (and that one was when he had already stopped). The one thing that never changes is how uncomfortable and painful rented boots are.
After Ryley’s lesson Dad met up with him and we headed over to the slightly bigger bunny hill. The first magic carpet they were on during the lesson wasn’t working so they had to walk up the hill. We went over to the working magic carpet and Ryley did one pretty good run and when we got to the bottom the line for the very slow magic carpet was huge. Ryley had been asking to go on the chairlift since we got there so Dad again asked him if he thought he could do it and we were off to the chair. Ryley did great getting on and off the lift each time. He loved being at the top of the hill with all the big guys and did great going down the hill. We ended up going down the intermediate (blue) run each time as Ryley found it hard to go across the hill to get to the green run. Ryley did 5 runs down the hill each time getting better and faster. There are a few video’s of him going down on Facebook. Snowboarding is definitely something he wants to do again.
Wednesday, January 19, 2011
End of Chemo for this Round and Low Counts
Karlee finished off her 4 days in a row pretty easily. Mom and Karlee were in and out in about 30 minutes on Thursday and then Dad and Karlee were a little slower on Friday, but were still done in about 45 minutes. Saturday we were up there early in the morning and had a great nurse in the Unit. We were done nice and quick and the nurse even gave Jennifer a little lesson on how to use her new BlackBerry. Saturday afternoon Ryley had a hockey game and the team showed great spirit coming back from a deficit to win. Even the ref came by and said our bench were incredible cheer leaders for the players on the ice.
Tuesday was the Beaver Pizza Party at Tom’s House of Pizza. We had a full house with 32 Beavers and 8 Leaders. The kids and adults all got to make their own pizzas behind the counter and then everyone ate. We all had a good time.
Wednesday morning Karlee had a CBC (Complete Blood Count) at the South Calgary Lab. The lab managed to misplace the appointment, but thankfully got them in pretty quickly. Around noon we got a call from our primary nurse, JoJo. Karlee’s counts were very low and they want to get her a transfusion very soon. Jo gave us a choice of coming in today and getting the crossmatching done and coming back on Thursday for the blood or just making it a long day on Thursday and doing everything at once. We elected to be up there at 8:30 Thursday morning and tough it out for the long haul. Karlee’s counts are the lowest they have been since she was diagnosed. Her hemoglobin in down to 67. The last time she got a transfusion she was down to 61. What has us more concerned is her white blood cell count is down to 0.6 and her ANC is 300. This means she is neutropenic and is very susceptible to any infections or anything else floating around. Hopefully her transfusion goes nice and easy tomorrow and they are home early.
Wednesday night Ryley got to be goalie for his hockey team’s practice. He went out there and gave it everything he had, but still had a tough go of it. The equipment weighed more than he did and he found it very hard to move around. About 30 minutes into the practice he told the coach that was working with him that he didn’t want to play anymore. We convinced him to finish the hour and a quarter practice, but he doesn’t want to play in the game tomorrow night. Hopefully next year he will have grown into the equipment and will be able to try it again.
Tuesday was the Beaver Pizza Party at Tom’s House of Pizza. We had a full house with 32 Beavers and 8 Leaders. The kids and adults all got to make their own pizzas behind the counter and then everyone ate. We all had a good time.
Wednesday morning Karlee had a CBC (Complete Blood Count) at the South Calgary Lab. The lab managed to misplace the appointment, but thankfully got them in pretty quickly. Around noon we got a call from our primary nurse, JoJo. Karlee’s counts were very low and they want to get her a transfusion very soon. Jo gave us a choice of coming in today and getting the crossmatching done and coming back on Thursday for the blood or just making it a long day on Thursday and doing everything at once. We elected to be up there at 8:30 Thursday morning and tough it out for the long haul. Karlee’s counts are the lowest they have been since she was diagnosed. Her hemoglobin in down to 67. The last time she got a transfusion she was down to 61. What has us more concerned is her white blood cell count is down to 0.6 and her ANC is 300. This means she is neutropenic and is very susceptible to any infections or anything else floating around. Hopefully her transfusion goes nice and easy tomorrow and they are home early.
Wednesday night Ryley got to be goalie for his hockey team’s practice. He went out there and gave it everything he had, but still had a tough go of it. The equipment weighed more than he did and he found it very hard to move around. About 30 minutes into the practice he told the coach that was working with him that he didn’t want to play anymore. We convinced him to finish the hour and a quarter practice, but he doesn’t want to play in the game tomorrow night. Hopefully next year he will have grown into the equipment and will be able to try it again.
Wednesday, January 12, 2011
Swimming and Clinic Day
Monday night day Dad had to shave Karlee’s head with a blade. She was starting to get stubbly in some area’s and was very smooth in others. We decided at the start of this journey that we wouldn't let her look ragged and scruffy. It is kind of strange to shave your daughters head, but at the same time she has very soft hair that is easy to shave.
Last blog I forgot to mention that Karlee is on oral chemotherapy. Medication isn’t an issue for Karlee anymore, but this one seems to be an issue for Mom and Dad. Karlee needs to take the chemo on an empty stomach (nothing for 2 hours before or 1 hour afterwards) and at bedtime. Because she is also on Septra we have to try and remember to give her Septra at supper time and chemo at bedtime. We always remember the chemo, but the septra has been a little hit and miss.
Tuesday night the Beavers, Cubs and Scouts went swimming at the wave pool with their families. Karlee was very excited to go swimming again as she has missed a few times due to not feeling well or being recently accessed. They don’t have an issue with her going swimming, but would like it to be a few days after she is accessed to minimize the risk of infection from the needle site. Karlee had a great time playing with Erica (one of the Beavers) and swimming in the waves. She still wears the lifejacket, but now had no fear of the waves and doesn’t mind getting her face and head wet.
It is interesting watching people’s reaction to a bald little girl. One of the other leaders who lives on the same street as us looked at her and said is she yours as he tried to figure out why we would shave her head. Had to explain to him that she had leukemia. Other people just get a sympathetic look on their face and don’t have a clue what to say. Some kids ask questions and we can explain to them what is going on. This is actually enjoyable to explain to them that she is sick, but that the drugs to make her better cause her hair to fall out. They are really fun to talk to and answer questions from.
Today was clinic day for Karlee. The drive up to the hospital was an adventure for Jennifer. About half way up there Karlee started saying she was hot; as she got closer she started saying her tummy was hot and moaning a little. Before Jennifer knew what was happening Karlee was vomiting in the back seat all over herself, blankie and the car seat. We have said this before, but we need to have extra clothes in the care. It was nice that we were going to the hospital as they have PJs we can borrow. Today was a very easy day at the clinic with only a CBC (complete blood count) and 1 type of chemotherapy. She didn’t even have to see the doctor today. The chemo was ready at 10:10, but it was almost noon before she got it due to a busy clinic day. Everyone was home by 1pm and Karlee had a fun afternoon at home. Karlee's counts are starting to drop. Her hemoglobin has dropped from 122 last week to 91 this week. This means she is probably headed towards another blood transfusion. She has blood work at the South Calgary Lab the next 3 weeks so we will have to call up and get the counts.
Wednesday night was supposed to be a busy evening, but everything seemed to fall apart at once. Ryley had a play date with Levi after school and had a great time. He was then supposed to have a a dry land practice at a local school. It appears the school was double booked so that was cancelled. Jennifer was supposed to have a massage tonight, but Jodie had 2 sick kids at home so she cancelled (which we didn’t mind). We had a nice relaxing evening watching a little TV and doing a lot of nothing.
Last blog I forgot to mention that Karlee is on oral chemotherapy. Medication isn’t an issue for Karlee anymore, but this one seems to be an issue for Mom and Dad. Karlee needs to take the chemo on an empty stomach (nothing for 2 hours before or 1 hour afterwards) and at bedtime. Because she is also on Septra we have to try and remember to give her Septra at supper time and chemo at bedtime. We always remember the chemo, but the septra has been a little hit and miss.
Tuesday night the Beavers, Cubs and Scouts went swimming at the wave pool with their families. Karlee was very excited to go swimming again as she has missed a few times due to not feeling well or being recently accessed. They don’t have an issue with her going swimming, but would like it to be a few days after she is accessed to minimize the risk of infection from the needle site. Karlee had a great time playing with Erica (one of the Beavers) and swimming in the waves. She still wears the lifejacket, but now had no fear of the waves and doesn’t mind getting her face and head wet.
It is interesting watching people’s reaction to a bald little girl. One of the other leaders who lives on the same street as us looked at her and said is she yours as he tried to figure out why we would shave her head. Had to explain to him that she had leukemia. Other people just get a sympathetic look on their face and don’t have a clue what to say. Some kids ask questions and we can explain to them what is going on. This is actually enjoyable to explain to them that she is sick, but that the drugs to make her better cause her hair to fall out. They are really fun to talk to and answer questions from.
Today was clinic day for Karlee. The drive up to the hospital was an adventure for Jennifer. About half way up there Karlee started saying she was hot; as she got closer she started saying her tummy was hot and moaning a little. Before Jennifer knew what was happening Karlee was vomiting in the back seat all over herself, blankie and the car seat. We have said this before, but we need to have extra clothes in the care. It was nice that we were going to the hospital as they have PJs we can borrow. Today was a very easy day at the clinic with only a CBC (complete blood count) and 1 type of chemotherapy. She didn’t even have to see the doctor today. The chemo was ready at 10:10, but it was almost noon before she got it due to a busy clinic day. Everyone was home by 1pm and Karlee had a fun afternoon at home. Karlee's counts are starting to drop. Her hemoglobin has dropped from 122 last week to 91 this week. This means she is probably headed towards another blood transfusion. She has blood work at the South Calgary Lab the next 3 weeks so we will have to call up and get the counts.Wednesday night was supposed to be a busy evening, but everything seemed to fall apart at once. Ryley had a play date with Levi after school and had a great time. He was then supposed to have a a dry land practice at a local school. It appears the school was double booked so that was cancelled. Jennifer was supposed to have a massage tonight, but Jodie had 2 sick kids at home so she cancelled (which we didn’t mind). We had a nice relaxing evening watching a little TV and doing a lot of nothing.
Monday, January 10, 2011
Aunt Fay, New Year’s Eve & Long Clinic Day
Looks like the first mistake of the New Year was not making any resolutions. A slightly late resolution looks like it needs to be to blog a little more so everyone knows what is happening with Karlee and the rest of us. It is hard to believe it has been 2 weeks since I last posted anything. This is going to be a big one since we have been busy!
Tuesday December 28th Dad and Ryley went for an afternoon swim at the Leisure Centre. As always Ryley had a great time swimming and playing on the slides, balls and play area. Afterwards we did a little shopping and picked up some of Mom’s scrapbooking.
Wednesday afternoon we went to the airport to meet Aunt Fay. She was flying in from Vancouver to meet Grandma, spend the night at the hotel and then fly to Las Vegas for New Year’s Eve. All of us were at the airport when Fay arrived. Once we got her luggage we headed over to their hotel to have supper at Moxie’s. Unfortunately they couldn’t accommodate all of us at one table so we got one table for 6 and another for 4, but they were not beside each other. We still had a good visit with Aunt Fay and then helped them get into their hotel room so they could be close to the airport for their early flight the next morning. On the way back from the airport we stopped and picked up Elmo from Grandma’s. He is going to be staying with us until the New Year when Grandma returns.
New Year’s Eve we headed over the Shelly and Steve’s place for some Chinese food and some good times. There were a number of various people involved in Scouts. We had a really good meal and lots of good conversation and spirits. The kids did great! Karlee hung into 11pm and then fell asleep in Shelly’s bed. Ryley was up to ring in the New Year and even made it until we went home at 1am. We had a great night with a bunch of great people.
Sunday morning Ryley had a hockey practice in High River. After a long drive it was a little disappointing to see that only 3 other kids had shown up from our team. Fortunately the Shaw Meadows team that was sharing the ice with us let us join with them and we had a great practice.
Monday morning was the first day back for some of us. Ryley was excited to head back to school. He was actually upset when Christmas break started because he wanted to keep going to school. Mom also started back driving bus again. At least she got to break in slowly with only one of her two schools being back on the first day.
Karlee was also back at it with a CBC (Complete Blood Count) at the South Calgary Lab. Today we had a lab tech who was concerned about a 4 year old giving blood so she wanted to call in everyone to help her. Dad assured her that Karlee was excellent and would make it very easy for her to take the blood. She then earned the stupid question of the year award when she asked, “Has she ever had blood taken before.” Dad was very, very close to saying, “No, we just shaved her head so she could look like Dad.” Seriously, how many cancer patients don’t have blood work on a weekly basis?
Tuesday evening was the first Beaver event of the year. We went roller skating at Lloyds Recreation. Ryley (and all the other kids) had a blast and many of the parents enjoyed reliving their youth. It was very surprising the number of parents that remember going to Lloyds for school patrol events and birthday parties.
Wednesday was Karlee’s first day in the clinic since December 21st. It was a nice break,but it was time to get back at treatment. Today was a full load day with Karlee having a procedure and then getting 4 different chemotherapy drugs. Because of the long weekend the clinic was particularly busy with 5 procedures. They always start with the youngest and this time Karlee was the 4th procedure. There are way too many young children getting cancer! Karlee made it through the procedure a little late, but not too bad then she started getting the chemo through her port. When she got to the last one (which took an hour to drip in) the nurses let Jennifer know that after the chemo was done Karlee needed another 4 hours of hydration before she could leave. This was about 2:30 so Jennifer was a little surprised that she wouldn’t be out for a long time. Fortunately Wednesday is KCFFA Pizza Night on the unit so she didn’t need to worry about supper. She had told Ryley that morning that she would try and pick him up after school; that obviously didn't;t work out too well. They got home around 8:15 so at least Ryley got to stay up to see them.
Thursday was another clinic day, but a very quick one. Karlee has 4 days in a row for the next 2 weeks to get Ara-C (another chemo drug). Mom and Karlee were in and out within 20 minutes. Friday Dad took both the kids up there after Ryley got out of school. Of course since Mom had the great day the day before something had to go wrong. It was another busy clinic day and there were lots of kids in the waiting room when we got there. The chemo was delayed today so we waiting in the waiting room for about 90 minutes. Fortunately the kids both played on the Nintendo nicely for most of the time while Dad chatted with the other parents. We were out of the clinic about 3:30 (2 hours after our appointment time) and one of the other kids, who had a 1pm appointment, was just heading in.
Saturday morning we had a very early hockey practice, but fortunately it was just down the hill. Dad went and spent a little time helping at the Scout bottle drive later Saturday morning and then we all headed up to the hospital for Karlee’s 4th day of treatment. Unfortunately we didn’t remember the freezie cream until we were almost at the hospital so everything was a little delayed while they waited for that to work before accessing her. All in all the visit went very well and we were out of there in just over an hour. Both Mom and Dad finally caught up with technology getting Blackberries to replace their aging cell phones. Email us if you want our PIN.
This round is a little harder on Karlee than some of the other ones (which we expected). One of the biggest things is she had chemo pees for 6 days out of the week. This means we have to wipe for her using gloves every time. She is also experiencing some discomfort on her bum. The chemo has to come out of her body somewhere and it can cause irritation (and even physical burns) when it exits the body. Her legs were bugging her on Thursday and Friday and then her mouth got sore. Today she was drooling a little and talking a bit funny.
Sunday Ryley had a hockey game. It was a very close game with Ryley’s team losing by one goal. Sunday evening was another great dinner with the family at Grandma’s house.
Monday was a big day for Karlee even though she didn’t realize it. Grandma came over at 7am and waited for the kids to get up while Dad went and stood in line to register Karlee for kindergarten. Dad was there just after 7:15am and the next person arrived at about 7:20. The caretaker of the school was nice enough to let us wait inside in the warmth of the vestibule. We had a nice chat with the retiring principal and then quickly registered for kindergarten. There was a very small line when the started taking registrations at 8am. The year we registered Ryley there were dozens of us there whereas this year there was only about 15 people registered by 8:30. Looks like this might be a smaller year for kindergarten.
Tomorrow is day off for Karlee and then we are back at it Wednesday, Thursday, Friday and Saturday. After these 4 days we get 2 weeks off with only a few CBC blood tests.
Tuesday December 28th Dad and Ryley went for an afternoon swim at the Leisure Centre. As always Ryley had a great time swimming and playing on the slides, balls and play area. Afterwards we did a little shopping and picked up some of Mom’s scrapbooking.
Wednesday afternoon we went to the airport to meet Aunt Fay. She was flying in from Vancouver to meet Grandma, spend the night at the hotel and then fly to Las Vegas for New Year’s Eve. All of us were at the airport when Fay arrived. Once we got her luggage we headed over to their hotel to have supper at Moxie’s. Unfortunately they couldn’t accommodate all of us at one table so we got one table for 6 and another for 4, but they were not beside each other. We still had a good visit with Aunt Fay and then helped them get into their hotel room so they could be close to the airport for their early flight the next morning. On the way back from the airport we stopped and picked up Elmo from Grandma’s. He is going to be staying with us until the New Year when Grandma returns.
New Year’s Eve we headed over the Shelly and Steve’s place for some Chinese food and some good times. There were a number of various people involved in Scouts. We had a really good meal and lots of good conversation and spirits. The kids did great! Karlee hung into 11pm and then fell asleep in Shelly’s bed. Ryley was up to ring in the New Year and even made it until we went home at 1am. We had a great night with a bunch of great people.
Sunday morning Ryley had a hockey practice in High River. After a long drive it was a little disappointing to see that only 3 other kids had shown up from our team. Fortunately the Shaw Meadows team that was sharing the ice with us let us join with them and we had a great practice.
Monday morning was the first day back for some of us. Ryley was excited to head back to school. He was actually upset when Christmas break started because he wanted to keep going to school. Mom also started back driving bus again. At least she got to break in slowly with only one of her two schools being back on the first day.
Karlee was also back at it with a CBC (Complete Blood Count) at the South Calgary Lab. Today we had a lab tech who was concerned about a 4 year old giving blood so she wanted to call in everyone to help her. Dad assured her that Karlee was excellent and would make it very easy for her to take the blood. She then earned the stupid question of the year award when she asked, “Has she ever had blood taken before.” Dad was very, very close to saying, “No, we just shaved her head so she could look like Dad.” Seriously, how many cancer patients don’t have blood work on a weekly basis?
Tuesday evening was the first Beaver event of the year. We went roller skating at Lloyds Recreation. Ryley (and all the other kids) had a blast and many of the parents enjoyed reliving their youth. It was very surprising the number of parents that remember going to Lloyds for school patrol events and birthday parties.
Wednesday was Karlee’s first day in the clinic since December 21st. It was a nice break,but it was time to get back at treatment. Today was a full load day with Karlee having a procedure and then getting 4 different chemotherapy drugs. Because of the long weekend the clinic was particularly busy with 5 procedures. They always start with the youngest and this time Karlee was the 4th procedure. There are way too many young children getting cancer! Karlee made it through the procedure a little late, but not too bad then she started getting the chemo through her port. When she got to the last one (which took an hour to drip in) the nurses let Jennifer know that after the chemo was done Karlee needed another 4 hours of hydration before she could leave. This was about 2:30 so Jennifer was a little surprised that she wouldn’t be out for a long time. Fortunately Wednesday is KCFFA Pizza Night on the unit so she didn’t need to worry about supper. She had told Ryley that morning that she would try and pick him up after school; that obviously didn't;t work out too well. They got home around 8:15 so at least Ryley got to stay up to see them.
Thursday was another clinic day, but a very quick one. Karlee has 4 days in a row for the next 2 weeks to get Ara-C (another chemo drug). Mom and Karlee were in and out within 20 minutes. Friday Dad took both the kids up there after Ryley got out of school. Of course since Mom had the great day the day before something had to go wrong. It was another busy clinic day and there were lots of kids in the waiting room when we got there. The chemo was delayed today so we waiting in the waiting room for about 90 minutes. Fortunately the kids both played on the Nintendo nicely for most of the time while Dad chatted with the other parents. We were out of the clinic about 3:30 (2 hours after our appointment time) and one of the other kids, who had a 1pm appointment, was just heading in.
Saturday morning we had a very early hockey practice, but fortunately it was just down the hill. Dad went and spent a little time helping at the Scout bottle drive later Saturday morning and then we all headed up to the hospital for Karlee’s 4th day of treatment. Unfortunately we didn’t remember the freezie cream until we were almost at the hospital so everything was a little delayed while they waited for that to work before accessing her. All in all the visit went very well and we were out of there in just over an hour. Both Mom and Dad finally caught up with technology getting Blackberries to replace their aging cell phones. Email us if you want our PIN.
This round is a little harder on Karlee than some of the other ones (which we expected). One of the biggest things is she had chemo pees for 6 days out of the week. This means we have to wipe for her using gloves every time. She is also experiencing some discomfort on her bum. The chemo has to come out of her body somewhere and it can cause irritation (and even physical burns) when it exits the body. Her legs were bugging her on Thursday and Friday and then her mouth got sore. Today she was drooling a little and talking a bit funny.
Sunday Ryley had a hockey game. It was a very close game with Ryley’s team losing by one goal. Sunday evening was another great dinner with the family at Grandma’s house.
Monday was a big day for Karlee even though she didn’t realize it. Grandma came over at 7am and waited for the kids to get up while Dad went and stood in line to register Karlee for kindergarten. Dad was there just after 7:15am and the next person arrived at about 7:20. The caretaker of the school was nice enough to let us wait inside in the warmth of the vestibule. We had a nice chat with the retiring principal and then quickly registered for kindergarten. There was a very small line when the started taking registrations at 8am. The year we registered Ryley there were dozens of us there whereas this year there was only about 15 people registered by 8:30. Looks like this might be a smaller year for kindergarten.
Tomorrow is day off for Karlee and then we are back at it Wednesday, Thursday, Friday and Saturday. After these 4 days we get 2 weeks off with only a few CBC blood tests.
Subscribe to:
Posts (Atom)