I can’t believe how long it has been since I posted anything. I guess that means we are starting to fall into “The New Normal.”
Karlee has been on Maintenance for a little over 2 weeks now and everything is going very well. She takes oral chemo each night at least 2 hours after eating. We are doing this at night about 8pm. It is difficult telling Karlee she can’t have anything to eat after 6pm, but she is starting to understand. She gets 1 6MP pill each night and Tuesday nights she gets an additional 5.5 MTX pills. We haven’t pushed her to start swallowing the pills, but she just chews them up and follows it up with a drink of apple juice. She still gets Septra twice a day 3 days a week and she is now on steroids for the first 5 days of each monthly cycle. It is nice only going to the hospital once a month, but taking the meds at home is a different challenge.
One of the interesting issues we ran into was the lack of Septra at the hospital pharmacy. We have always had this prescription filled at the hospital as we were told it was a compound prescription and can be difficult to find the components at other pharmacies. Last time Karlee was in we tried to get it filled and were told they had been out for a few weeks and didn’t have an estimate of when it would be back in stock. We had a couple of weeks supply so we figured we would wait it out and hope they got more in. This week we knew we didn’t have enough to make it through the week so we called the hospital again and they were still out of stock and suggested we just try phoning around and maybe someone had some old stock. Fortunately the third pharmacy we called had some stock and we had the prescription transferred down there and managed to get her some antibiotics for this week and the next couple of months.
The kids are getting excited about soccer season. Karlee was supposed to start tomorrow, but with the snow Thursday and Friday they have closed the fields and are postponing the season for another week. Ryley is still hopefully going to start on Tuesday assuming they reopen the fields. Ryley has several players from his team last year on his team again so we should have another great year. We had the kids put on their cleats and shin pads and went out last weekend to give them a little practice. They both had a great time which will hopefully translate into a good season.
Karlee has been enjoying preschool again now that she is healthy. Her teacher is retiring this year after 20 years of running Jamie’s Preschool. It will be interesting to see how they replace Mrs. Mackie since she is great with both the kids and the parents and has been such and integral part of the school for so long. Thursday’s seem to be Karlee’s favourite day since she gets to go to Gymnastics first and then goes to school. The people at Star’s Gymnastics do a great job with the kids. Having such a small group and one of the students having an aide means that the kids get almost one-on-one attention. Dad got to take her one week and it was fun to watch her enthusiastically attack each element.
We have started going for nightly walks again now that the weather is a little better. Karlee loves the wetlands just at the end of our street. The geese have started to nest so we will have little goslings very soon. We also saw 3 muskrats swimming around the other night. We have looked for years and have only ever seen one at a time. It looks like she had a couple of little muskrats. Now we take the camera when we go for walks and try and get a picture of the young ones.
We have a pretty full and fun weekend planned with dinner out tomorrow night and then a friend’s band is playing at a pub on Sunday night. Grandma is going to have a busy weekend with a couple of kids.
Friday, April 29, 2011
Tuesday, April 12, 2011
Start of Maintenance and a Hospital Mistake
Today was the start of maintenance and a little scary due to an error at the hospital with medication. Everything turned out fine, but first to some happenings last week.Karlee was finally able to go back to preschool after her 3 week quarantine due to being exposed to chicken pox. Tuesday morning when they got back from the bus run at 9am Karlee wanted Mom to make her lunch so she could be first to school. It was great to see her so excited about getting back to school. She had a great day back a school!
Wednesday Mom went to the Telus World of Science with Ryley and his class. They went to Titanic: The Artifact Exhibition and had a great time. They were both 3rd class passengers who perished with the ship. While they were playing on the ship Dad got to take Karlee to preschool. We were early and Dad was a little concerned as no one else was there until exactly 12:15. It was fun to see where Karlee gets to go to school.
Friday we all went swimming in Okotoks. Karlee remembered her suit this week and enjoyed herself much more than sitting on the deck watching. Both kids were disappointed when left and would gladly have stayed and swam a lot longer.Saturday morning Mom headed to a safety class with work and Dad, Grandma and the kids were to the Loose Moose theatre to see Robin Hood with Jamie’s Preschool. It was nice to meet some of the families of the kids that Karlee goes to school with and some of the alumni. Mom actually managed to make it to the theatre before the play started so we all got to enjoy it together. It was a very good play with some excellent local actors. Both the kids love live theatre and thoroughly enjoyed Robin Hood. After the show the actors all sat down and signed the programs for all the kids.
Immediately after the play we headed down to Lethbridge to visit Marlene and Titus and family. It was a very long drive down this time. We ate in the car to save time and still managed to stop 3 times for bathroom breaks and to get stuff from the trunk. We finally got there at 2:30. We had a good visit with everyone and the kids enjoyed playing with their cousins. It was a late drive back with us not getting home until almost 11pm. Ryley, of course, had to be a trooper and not fall asleep until 10:45.
Today was Karlee’s first day of maintenance. The maintenance phase kicks off with a procedure day and two different chemo drugs. Everything was going fine until after the procedure when they called Karlee’s nurse and said they needed a heart monitor. Mom was a little freaked out, but had to wait for her to come out. They mistakenly gave Karlee a double dose of ondansetron (the anti-nausea medication). This could have put her into cardiac arrest so they hooked her up to the monitor and watched her closely for 2 hours before giving her any drugs. After the 2 hours they pronounced her good and then gave her the chemo. Thankfully everything turned out ok.We also had an issue with the pharmacy today. Karlee takes Septra 3 days every week, twice a day. Dad called in to request a refill and everything seemed fine; about 20 minutes later they called back and said they didn’t have one of the drugs needed to make the compound prescription and had not had it for the past 2 weeks. We called our primary nurse to see what we could do and if she could get a better update. She let us know that they could get us tablets, but not liquid and they did not have an ETA on the drug arriving since it was a supplier issue. We are going to use what we have and hope they have new stuff by the time we need it. JoJo also gave us the go ahead to get Karlee’s ears pierced. She has wanted to get them done for a while now and we figured that the end of active treatment and the start of maintenance would be a great time to do that!
Tonight was the start of Karlee taking her oral chemo each night. She took a tablet and chewed it up and swallowed everything with absolutely no issues. That was a huge relief for us and should make the next 2 years much easier for us.
Monday, April 4, 2011
Radiothon
Tuesday Ryley got to go to The Royal Tyrrell Museum with Uncle Randy, Aunt Catherine and the cousins. Everyone had a good time and enjoyed seeing all the dinosaurs again.
Thursday morning we were off the the Kids Cancer Care offices to record an interview for Astral Media’s National Day of Caring for Kids Radiothon. You can check out their website at http://www.astral.com/en/social-responsibility.
We arrived a little early and spent some time visiting with all the great staff who work there. We also dropped off the money from the Skate-A-Thon. There is some additional money still to come, but so far we raised over $12,700. Thank you to everyone who made donations, showed up to support us or helped with the Skate-A-Thon. I was not allowed to post this earlier as we had all the money in our house. Now that it has been deposited in the bank and given to the KCCFA Jennifer will let me tell everyone how great they did! We also completed the kids medical forms for family and summer camps.
They were running a little behind, but we still got in about 15 minutes late. We had met the family before us at the KCCFA Gala and have read their entire blog about their journey. It is a long journey they have been through, but they have come through the other side and are doing great. If you are interested in reading about their journey you can find their blog here: http://www.caringbridge.org/visit/shainelynn.
We met with Fuzzy from Virgin 98.5 and chatted with him and a couple other radio people for about 45 minutes. Fuzzy is going to put us in one of his upcoming blogs: http://calgary.virginradio.ca/blog/fuzzy/home.aspx. I’m not sure if they got anything good with the kids talking over us and making strange noises. It was fun to tell our story and talk about everything great the Kids Cancer Care Foundation has done for us. The formal interview was probably about 25 minutes and then we just chatted with them. As we were leaving I was chatting with Fuzzy and he said they got some of the best stuff when we were just talking. I guess that is why they leave the recorder going for the entire time. Afterwards we met the next people to be interviews, Rose and her daughter Savannah. It was really neat to see people we have seen at the events and at camp in the office and get to chat with them again.
The Radiothon is going to air on May 5th on Cjay, Virgin and Classic Country 1060. It is an all day event and everyone is also invited down to Market Mall where they will be broadcasting live. They are going to take our interview and sound clips and do some promos for the 2 week before the event and then should air some of us during the event itself.
The KCCFA is looking for books, for children of all ages, to have at Camp Kindle so the kids have books to read. If anyone has any books they would like to donate please let me know at ronlewis@telusplanet.net and I will arrange to get them to the KCCFA.
Friday evening we went down to Okotoks to go swimming. Jennifer had told both the kids to get their swimsuits and put them in the bag. When we got in there are were getting dressed Ryley and I hear Jennifer’s voice in the men’s locker room telling us they are not going swimming. It seems Karlee hadn’t listened to her Mom and hadn’t bothered to tell anyone that she didn’t get her suit. Ryley and I had a good, but short swim.
Early Saturday morning the snow started and didn’t stop until Saturday night. We ended up with a little over 10 inches of very heavy, very wet snow. We did a lot of shovelling and trying to drive through this mess. Saturday morning because of the weather we decided to drive downtown and give blood since it wouldn’t be busy. We were there at 9am with one appointment between the 2 of us. Everything went great and the kids even behaved for us. Jennifer had some issues with one of her arms so they ended up poking both of them to get a pint from her. When we got home the kids went outside an played and then had some friends over. Dad went to lodge on Saturday night for the first time in a while. It was great to see everyone again.
Sunday we finally made it to church again and did supper at Grandma’s with everyone. Monday the KCCFA dropped off a bunch of meals for one of their new programs, Cooking and Caring. It was great filling up the freezer with great meals.
Last blog I mentioned that Karlee will be getting a little chemo in the maintenance phase, but I guess I should have explained that a little more. This is all kind of on a little bit of rumour, a little bit from talking to other people and little from the doctors and nurses, but we don’t have a firm plan yet. We should only be at the hospital once a month for the next 2 years. Once every 3 months she will get a procedure to inject chemo into her spinal fluid as well as get vincristine through her port. The other months she will only get vincristine. She does her blood work the day before and then on clinic day she only goes in, gets her port accessed and gets the chemo pushed. Hopefully those days will be under an hour. The new challenge that we are going to face is that Karlee is going to get oral chemo every day. Once a week she will also get a different oral chemo and 5 days a month she will be on steroids again. The biggest challenge (we think) is that it needs to be taken on an empty stomach. She can not have anything to eat 2 hours before or 1 hour after the chemo. Karlee likes to eat as soon as she gets up, kind of grazes all day and needs her bedtime snack. We are still debating between last thing at night and first thing in the morning. We would welcome any suggestions on this one: ronlewis@telusplanet.net
Today was also a blood test day for Karlee. We got the counts back this afternoon from our primary nurse and everything is great.
Thursday morning we were off the the Kids Cancer Care offices to record an interview for Astral Media’s National Day of Caring for Kids Radiothon. You can check out their website at http://www.astral.com/en/social-responsibility.
We arrived a little early and spent some time visiting with all the great staff who work there. We also dropped off the money from the Skate-A-Thon. There is some additional money still to come, but so far we raised over $12,700. Thank you to everyone who made donations, showed up to support us or helped with the Skate-A-Thon. I was not allowed to post this earlier as we had all the money in our house. Now that it has been deposited in the bank and given to the KCCFA Jennifer will let me tell everyone how great they did! We also completed the kids medical forms for family and summer camps.
They were running a little behind, but we still got in about 15 minutes late. We had met the family before us at the KCCFA Gala and have read their entire blog about their journey. It is a long journey they have been through, but they have come through the other side and are doing great. If you are interested in reading about their journey you can find their blog here: http://www.caringbridge.org/visit/shainelynn.
We met with Fuzzy from Virgin 98.5 and chatted with him and a couple other radio people for about 45 minutes. Fuzzy is going to put us in one of his upcoming blogs: http://calgary.virginradio.ca/blog/fuzzy/home.aspx. I’m not sure if they got anything good with the kids talking over us and making strange noises. It was fun to tell our story and talk about everything great the Kids Cancer Care Foundation has done for us. The formal interview was probably about 25 minutes and then we just chatted with them. As we were leaving I was chatting with Fuzzy and he said they got some of the best stuff when we were just talking. I guess that is why they leave the recorder going for the entire time. Afterwards we met the next people to be interviews, Rose and her daughter Savannah. It was really neat to see people we have seen at the events and at camp in the office and get to chat with them again.
The Radiothon is going to air on May 5th on Cjay, Virgin and Classic Country 1060. It is an all day event and everyone is also invited down to Market Mall where they will be broadcasting live. They are going to take our interview and sound clips and do some promos for the 2 week before the event and then should air some of us during the event itself.
The KCCFA is looking for books, for children of all ages, to have at Camp Kindle so the kids have books to read. If anyone has any books they would like to donate please let me know at ronlewis@telusplanet.net and I will arrange to get them to the KCCFA.
Friday evening we went down to Okotoks to go swimming. Jennifer had told both the kids to get their swimsuits and put them in the bag. When we got in there are were getting dressed Ryley and I hear Jennifer’s voice in the men’s locker room telling us they are not going swimming. It seems Karlee hadn’t listened to her Mom and hadn’t bothered to tell anyone that she didn’t get her suit. Ryley and I had a good, but short swim.
Early Saturday morning the snow started and didn’t stop until Saturday night. We ended up with a little over 10 inches of very heavy, very wet snow. We did a lot of shovelling and trying to drive through this mess. Saturday morning because of the weather we decided to drive downtown and give blood since it wouldn’t be busy. We were there at 9am with one appointment between the 2 of us. Everything went great and the kids even behaved for us. Jennifer had some issues with one of her arms so they ended up poking both of them to get a pint from her. When we got home the kids went outside an played and then had some friends over. Dad went to lodge on Saturday night for the first time in a while. It was great to see everyone again.
Sunday we finally made it to church again and did supper at Grandma’s with everyone. Monday the KCCFA dropped off a bunch of meals for one of their new programs, Cooking and Caring. It was great filling up the freezer with great meals.
Last blog I mentioned that Karlee will be getting a little chemo in the maintenance phase, but I guess I should have explained that a little more. This is all kind of on a little bit of rumour, a little bit from talking to other people and little from the doctors and nurses, but we don’t have a firm plan yet. We should only be at the hospital once a month for the next 2 years. Once every 3 months she will get a procedure to inject chemo into her spinal fluid as well as get vincristine through her port. The other months she will only get vincristine. She does her blood work the day before and then on clinic day she only goes in, gets her port accessed and gets the chemo pushed. Hopefully those days will be under an hour. The new challenge that we are going to face is that Karlee is going to get oral chemo every day. Once a week she will also get a different oral chemo and 5 days a month she will be on steroids again. The biggest challenge (we think) is that it needs to be taken on an empty stomach. She can not have anything to eat 2 hours before or 1 hour after the chemo. Karlee likes to eat as soon as she gets up, kind of grazes all day and needs her bedtime snack. We are still debating between last thing at night and first thing in the morning. We would welcome any suggestions on this one: ronlewis@telusplanet.net
Today was also a blood test day for Karlee. We got the counts back this afternoon from our primary nurse and everything is great.
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