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.
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