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.
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