Karlee's Leukemia Journey: October 2010

Here is the speech we delivered this morning for the KCCFA Board of Directors. Ron read the words in black and Jennifer the words in red.

Most people’s biggest fear is speaking in public. I would have agreed with that 3 months ago, but now I think most people’s biggest fear should be being told, “Your child has cancer.” Today we are living through both those fears.

My name is Ron Lewis and this is my wife Jennifer and we have 2 children; our son Ryley who is now 7 and our daughter Karlee who just had her 4^th birthday. We would like to thank you for the invitation to come and share our story with you. We are going to take you through our cancer journey so far and discuss the impact the Alberta Children’s Hospital and the Kids Cancer Care Foundation of Alberta have already had on our lives.

One of the first things we did once we got the diagnosis was to start a Blog to keep everyone up to date. We have received lots of positive feedback on the blog and you will see some quotes from the blog on the screen behind us. We have also included pictures of our journey and of events that have been put on by the KCCFA.

Our journey officially started on Friday August 6^th of this year when our 3 year old daughter, Karlee, was diagnosed with acute lymphoblastic leukemia. As everyone else’s journey did, ours started before the official diagnosis with strange and unexplained pain and several trips to the hospital, urgent care and the doctor’s office.

The first sign anything was wrong with Karlee was back in the middle of May when she started complaining about tummy pain. We realized this wasn’t a typical tummy ache, so we went to the South Calgary Urgent Care Centre. They couldn’t determine a cause so we were back at home after a few hours. The pain didn’t go away so we took her to the Children’s that evening. After almost 24 hours in emergency we were told it was interception of the bowel and it had corrected itself. We were also told that the odds of this ever happening again were very slim.

The next episode was almost 2 weeks later, to the day. After this trip to emergency we were told that it was constipation and to start her on laxatives and fibre. We had 3 more very painful episodes that lasted 2 or 3 days each that we treated at home or through our family doctor using Tylenol for the pain. These episodes were the start of us no longer being in control of our lives as we ended up being at the mercy of the pain as Karlee was completely incapacitated during these times. We ended up missing a couple of camping trips and several day trips we had planned due to hospital stays or Karlee not being able to leave the couch.

Finally on July 31^st she had another episode and this one seemed more intense than the others. We took her to the Children’s Hospital again and this time they admitted her to finally get to the bottom of what was going on. Since it was the long weekend, not much happened except a lot of sitting in a room and trying to entertain a 3 year old. The next week brought a lot of specialties to look over Karlee and say it wasn’t their area. We started to see how the hospital looks after patients and families this week. The nurses on Unit 2 were great and the Child Life Specialist did a great job helping keep both children entertained. The nurses on Unit 2 nicknamed her “Karlee Care Bear” and they all said she had the sweetest little voice.

Wednesday we saw Dr. Singh for the first time. He didn’t feel it was cancer but was still going to do a flow cytometry test on her blood. On Thursday they again brought Dr. Singh in and he wanted to do some further testing on Friday. Friday morning she went in for her first bone marrow aspirate and spinal tap. About 3 o’clock Friday afternoon Dr. Singh and JoJo came to our room and told us that Karlee did have indeed have leukemia and we would be starting treatment on Tuesday.

This was the worst moment of our life. After the words “Your child has cancer” you pretty much tune out everything else that is said.

As bad as this news was we chose to look at this with a more optimistic view. At least we had an answer to what was causing her pain and we had a starting point to make her better. We knew that in the next few days we would have a plan to get Karlee back to being a healthy little girl.

Dr. Singh didn’t feel there was any benefit to keeping us in the hospital over the weekend so he discharged us with instructions to return to Unit 1 on Monday morning.

Getting discharged right away was a nice treat as we had a chance to digest what we had been told and to regroup as a family over the weekend and spend a little quality time together.

Friday we started talking to Karlee and Ryley about her leukemia and what will be happening over the next few months and years. Explaining what is happening to a 3 and a 6 year old is challenging, especially when you don’t fully understand everything yourself. We explained some of the physical changes Karlee would be experiencing including losing her hair due to the chemotherapy. She was very accepting of the fact that she would soon look like Dad. We also explained to her that she could help another little girl going through what she is by donating her hair to help make a wig. She agreed that she wanted to help someone else, so Saturday we make an appointment to cut her hair. This was Karlee’s first real hair cut as up until this time she had only trimmed her hair. Beaners was very helpful getting us in on short notice and giving us a private area to help prevent germs. Cutting her hair was a lot harder on Mom and Dad than on Karlee, because it make everything real. At the end she had a beautiful sassy hair cut with pink streamers in it which we all loved. We mailed the hair off within the next few days and Karlee and the whole family received several thank you letters.

Sunday night we all got an idea of what the next several years will be like. About 11 that night Karlee seemed to be in a lot of pain; we figured she was probably having another episode. Her temperature was pretty good, but it seemed like a good time to call the oncall oncologist. After a few back and forth calls they felt it would be best to bring her in due to her lack of fluid intake. Ryley got a rude wakeup call when he was woken up and whisked over to Grandma’s in the middle of the night. This really bothered him as he didn’t understand what was going on and why Karlee was going to the hospital.

Our first night in the hospital gave us a taste of the incredible staff on unit 1. Even though we arrived after 1 in the morning they greeted us in a friendly manner and ushered us into our room. We saw a doctor with 15 minutes of arriving and the nurse was with us the whole time. We were treated with respect and kindness as we got the tests and admission procedures completed. It was a rough night for the two of us as we tried to sleep on the bed or the chair. Karlee on the other hand had a great sleep in the bed after having some fluids and a little codeine.

Our first day in the Oncology Unit was a whirlwind of doctors and people. We saw 5 different groups of specialists including the Paediatricians, Oncologists, Infectious Disease Specialists, Haematologists and Surgeons. We also talked to the social worker a couple of times that day. The first visit was a really quick one to introduce herself and deliver a bag from the Kids Cancer Care Foundation. The bag contained some toiletries, gum, cards and candy, a little planner and some knickknacks. It was great to get something like this as it had everything you needed… just add clothes and go. It was a nice gesture and let you know that other people were thinking about you and what you needed.

Later in the day the social worker again stopped by and spent considerably more time talking with us. The first thing she did was give us a book that was provided by the KCCFA. This book was written to specifically address childhood leukemia and to help answer some of the questions we have. Prior to getting this book we had been using the internet to find out answers. As everyone knows the internet can be a great resource for information, but it can also be one of the best sources of misinformation. The first search I did was for Leukemia and I got a startling fact like this one: In 2000, approximately 256,000 children and adults around the world developed some form of leukemia, and 209,000 died from it. I quickly realize that I needed to refine my search criteria to look at childhood leukemia and to ensure I was looking at reputable sites. This book was great as it was a reputable source, talked specifically about childhood leukemia and had current information.

We also had our first family meeting to talk about treatment and to provide consent for the treatment. It is a little intimidating going into a room with a couple of doctors, a nurse and a social worker, but as with everyone we had dealt with at the Alberta Children’s Hospital, they quickly put us at ease. They answered any questions and concerns we had and were willing to explain everything until we understood it.

Tuesday was a very interesting day with lots of action in both the treatment and the family care area. Karlee had surgery in the morning to have her port inserted. The surgery went very well and she woke up without incident and was in very little if any pain. During the surgery Karlee got her first chemo injection into her spinal fluid. Later that afternoon Karlee also got her first chemotherapy treatment through her port. The first day of treatment went very smoothly with only some minor nausea which was quickly treated with medication.

Tuesday Ryley spent some time in the Edward Sunshine Room with the Child Life specialists. He really enjoyed doing the crafts and playing the games, but the most exciting thing was being asked if he wanted to go to camp next week. When Jennifer went down to see how Ryley was doing she was shocked that an offer like this would come along at all let alone on the second day after being admitted to the unit and not even for the patient, but for a sibling. We talked about it with Ryley and he seemed excited about the opportunity so we filled out the paperwork to see if they could get him in.

The next day it was confirmed that Ryley could get into camp even though it was very short notice and he was only 6. We were a little nervous about him being away from us overnight, but we kept talking it up with him and trying to make it sound exciting. His major concern about camp was where he was going to get dressed. We kept telling him that if that was his biggest worry he would have a great time.

Wednesday we were also introduced to the beaded journey. The beaded journey allows the family and the patient to track their hospital visits, pokes, chemotherapy, special events and just about everything else. The KCCFA provides the beads for the cancer patient and provides the start of the journey for siblings. We decided this would be a great way to allow the kids to see visually what will happen over the next few years. Ryley was so excited about his beaded journey that we had to drive over to the mall right away to get him beads.

Wednesday we were also offered a pair for tickets to sit with Vince Danielson at a Stampeders game by Child Life. This was also another exciting event for Ryley as he had never been to a football game. It was also exciting for me as it had been a while since I had been to a game and I had definitely never been to a locker room.

Wednesday night was also our first Pizza Night on the unit. We just spent a little time in with the other people that first night, but it was still therapeutic to talk to other parents and see other kids.

As a finale on Wednesday our Pastor at our church did a special sermon. When he heard about what we were going through he changed his sermon to reflect what was happening. This is one of the first crisis’s our church had gone through that was going to have a long term impact so they are all concerned about us. Our church community has rallied around us and assisted us with meal and support as needed. Unfortunately we were still in the hospital and couldn’t make it to church, but we did listen to it the next day on the internet.

Friday morning we went to Coffee Time on the unit put on by the KCCFA. Again we met a few more people and enjoyed a few stories from other parents.

Friday we also challenged Karlee’s supposed penicillin allergy and she passed with flying colours. Since we challenged the allergy and Karlee needed her chemotherapy our day pass turned into a 3 hour pass. It was still a nice break for Karlee to get out of the hospital even for a little while and see her pets and home.

Saturday we were discharged from our first stay in the oncology unit. I would like to read a quote from the blog about this weekend.

“Sunday was a nice relaxing day at home. We spent a little time playing in the yard and doing a lot of nothing. The Kids Cancer Care Foundation and the Alberta Children's Hospital are doing an incredible job of ensuring the both Ryley and the rest of us are taken care of during this journey. We all know this is going to be a huge stress on the family and we realize we need to make sure Ryley is looked after emotionally. These 2 groups are making that so much easier to ensure he gets to do fun stuff, has someone to talk to and hopefully understands some of what is going on.”

Sunday night Jennifer and Karlee went to Grandma’s for supper while Ryley and I headed up to the football game. It was a very exciting game with the Stamps thoroughly trouncing the Eskimos. Ryley’s name was announced over the PA system and everyone around us kept giving us the little balls they tossed out. After the game Vince took us down to the locker room to get Ryley’s hat and shirt signed by the players. It was a once in a lifetime experience that he really enjoyed. Another huge advantage to going to the game was that Ryley got to meet Ashley, one of the volunteers going to camp the next day. It made me feel better that he would at least know someone out there.

The next morning we were up bright and early and headed to the bus pick up point for Camp Kindle. Ryley was excited and also a little nervous about going to camp, but he wouldn’t admit it. When we got there we met Blair, another of the volunteers and a cancer survivor himself. Blair immediately started chatting with Ryley and making him feel comfortable. When everyone else showed up it was great. Everyone made us feel welcome and made registration so easy. We were particularly impressed with the pillow case they had for Ryley. We only first found out about the camp 5 days ago and they already had a personalized pillow case for him.

At first when we got there Ryley was a little shy and not sure about the other kids. By the time they were ready to load the bus Ryley had forgotten I was there and wanted to get on the bus with his new friends. I had to remind him to come say goodbye to me before he got on the bus.

The next day was our first clinic day. Everything went smoothly; she had her procedure and got her chemotherapy and we were out of there in the early afternoon. We had to stop at Ikea on the way home to get some chair cushions for her. Either the chemo or the steroids were making her body very sensitive and the chair was uncomfortable to sit in now. Karlee also found having the animals around her to be very annoying. Later that afternoon Jo called from clinic and told us that Karlee’s haemoglobin had fallen to too low a level and she would have to come back tomorrow for a transfusion.

We had been expecting a transfusion since the start of this journey, but for some reason this seemed to bother us. We had some issues with the transfusion process. Karlee is IgA deficient so there was some discussion between the oncologists and haematology about how much to wash her blood. The end result was that Karlee didn’t get the transfusion until almost 5pm and so they could monitor her she had to stay overnight. The only good thing about being admitted on Wednesday is that it was pizza night. Grandma sat with Karlee while Mom and Dad went down and got everyone food. We also got to call camp that night and talk to the counsellor and see how Ryley was doing. It sounds like he is having a great time and has figured out that getting dressed in front of a bunch of other boys isn’t a big deal.

The next day we were discharged in the morning and that afternoon we again got a call from Jo. This time it was great news; less than 1% of Karlee’s cells are now blasts. When she was diagnosed between 80 and 90% of her cells were blasts. This meant she was responding very well to the treatment. This was also the day where I officially became the medicine man. For some reason Karlee prefers taking her medicine from Dad.

On Saturday of that week I drove out to Camp Kindle to pick Ryley up. I’m going to read another quote from the blog to describe the camp and his experience: “The camp was absolutely beautiful situated in a beautiful valley with lots of huge trees and very nice buildings. Ryley had a great time at camp and even behaved himself. He enjoyed the archery and the survival training. He learned to light a fire with 2 matches, build a stretcher and learned some basic first aid. They had a banquet and dance on the last evening. Ryley had a tattoo on his forehead, gel in his hair and his fingernails painted a nice blue (it was the only boy colour). On the drive home we stopped at Smitty's in Cochrane and had breakfast. Ryley is looking forward to going to camp next year already. He met some nice new friends and liked all his counsellors and volunteers.”

The next week we ended up spending a couple days in the hospital due to Karlee’s fever and energy level. The high point of this visit was being in there on pizza night and Karlee being in a good mood. We managed to sit and talk with the other families and the kids had a great time. This was one of the first times we actually got to meet the other families and spend some time with them.

We also got some more good news during this hospital stay that Karlee had a favourable chromosomal analysis. This again improved her prognosis.

The long weekend in September we didn’t end up getting admitted, but we did end up at the hospital on Friday, Saturday, Sunday and Monday for antibiotics and to try and get Karlee’s port working again. Fortunately everything worked out fine and she didn’t need to be admitted.

The rest of September was pretty standard for a cancer patient. Karlee had a weekly trip to the clinic for treatment and several other trips to the hospital to get some IV antibiotics due to unexplained fevers.

When we originally heard about family camp we were all very excited, but at the start of September it looked like Karlee would not be healthy enough to go. On September 21^st Dr. Singh gave Karlee clearance to go to camp. Once again Mary was incredible getting us all signed up and everything ready to go in 3 days.

We arrived at camp on Friday evening and immediately the staff and volunteers were everywhere to help us get settled in. Both Karlee and Ryley knew one of the volunteers from camp and the hospital. We were in a room with 2 other families. One family had a daughter with leukemia who was almost the same age as Karlee and another younger daughter. The other family had a daughter who lost her battle with cancer, but would have been the same age as Karlee and a son who was a year younger than Ryley.

I figured we would have fun at camp, but wasn’t sure about the other parents and what they could do for us. After the first night of just sitting around and talking with parents I knew that the relationships were the real reason we were out here.

Friday night was a time of getting to know other people and later having a camp fire. The kids loved the camp fire songs and went to bed thoroughly exhausted. The volunteers stayed in the dorm to look after the kids while the parents all go together in the dining hall for a few presentations and to spend some time with the other parents.

Saturday morning was a very active time. Ryley and I took off for the giant swing after breakfast; it was fun helping everyone pull the people up and then it was a great thrill going on the swing. Karlee and Jennifer went to make a wreath, which is still hanging on our front door. They then had enough time to head over to the Spa and get Karlee’s nails painted and for Jennifer to have a massage. We then all went to make bracelets which we now wear to symbolize camp and the healing process that takes place there.

After lunch all the parents went for a walk up to the top of SunSeeker cabin. The views were only matched by the conversations shared between the parents. It was very important to us to hear about others who had gone through similar situations. Everyone at camp can relate to the words, “Your child had cancer,” and that forms a special bond. It was enlightening to hear about all the success stories, to listen to all the challenges people went through and to make some great connections.

One of the families we were rooming with had a daughter who did not survive her journey with cancer. It was incredible to see their attitude and optimism even after something so terrible happened. It showed us how important attitude is and that if they can thrive when something like that happens; we could get through anything.

Saturday night was a great dance and party. Everyone had a very good time dancing, enjoying the fire and spending time with the other people. After the kids were in bed a bunch of parents again got together and sat around and just talked.

Sunday morning was a time for some family games and then we were on our way home.

October has so far been uneventful on the treatment front. We have now stretched out our clinic days to every 10^th day and we have only had to make a few trips to the hospital for fevers.

Mary arranged for us to get tickets to a Hitmen game. The seats were great and the kids enjoyed going over to the entrance to see the players come out and following Farley the Fox around the arena. They both got to give Farley a great big hug.

Mary also got us tickets to see the Wiggles. We jumped at the chance for the kids to see the Wiggles and were not disappointed. The kids spent the majority of the concert dancing, singing and jumping around. The Wiggles even managed to entertain the adults in the audience.

The benefit that the KCCFA brings to kids and families cannot be measured. When we were first in the hospital talking about camp, starting the beaded journey, pizza night and coffee time all helped to keep us busy with other things. This allowed us to focus on other fun and exciting things and prevented us from sitting there and worrying about leukemia. The beaded journey is a fun way to commemorate hospital visits, clinic days and special events for the kids. They enjoy threading the beads on and looking at the journey.

Sending Ryley to camp just over a week after Karlee was diagnosed was incredible for everyone. It allowed Ryley to get away from the stress of the hospital and gave him a chance to go away and be a kid. He had such a great time there and is looking forward to going again next year and seeing the friends he made this year again. Camp also gave us an opportunity to focus on Karlee and getting through those first couple weeks and the first clinic visit and transfusion without having to entertain Ryley.

Being given tickets to events is great for the whole family. Being offered tickets a few days in advance is great because we can have a good idea if Karlee will be able to attend an event. Buying tickets month in advance is difficult now because we never know if Karlee will be in the hospital, will have low counts or will not be feeling well enough to attend due to the treatments. Being able to go to stuff like this makes us feel like a normal family and allows us to forget about everything that is happening for a few hours.

Family camp was by far the best event the KCCFA has put on yet. The camping activities were great and the kids enjoyed meeting and playing with the other kids, but the connections that we made as parents are invaluable. Being able to sit down and talk to someone who has gone through the exact same thing as you lets you know there is hope. It is also reassuring to talk to people who have made it through other cancers. Everyone out there offered support and words of encouragement and helped put everything in perspective. As strange as it sounds I also took a lot of strength from the families who had lost a child to cancer. To see their strength and attitude towards the cancer and life in general was a huge inspiration to me. The staff and volunteers at camp were excellent. They allowed the parents to spend time without the kids and helped with anything we needed. I hope that when we are a little further in our journey we will be able to inspire other parents and help them get through their own battles.

We are really looking forward to some of the events that are coming up. Karlee is really starting to miss some of the socialization that she used to get. She is very excited about the Halloween party and a chance to spend some time with other kids. Both kids are excited about going to Culinary Kids and getting to cook some food and then eat it.

One of the topics we were asked to speak about is, “How much is too much.” This is really hard to answer, especially being so new. I know the first time we were offered the chance for Ryley to go to camp the first question I asked was, “How much?” and wondered if we could afford to send him. Accepting charity is difficult, but at the same time we would never be able to afford to do some of this stuff and deal with reduced work hours, parking, prescription and other costs that come with cancer. The camps, the free tickets and the events are all great and don’t seem to be overly extravagant. From the people we have met so far through the KCCFA I think most of us would speak up if we felt the events or promotions were getting out of control.

I can only speak for us here, but I know we are trying to give back to the KCCFA. We have encouraged people to support the KCCFA with their charity dollars. Additional Jennifer makes slippers that she sells at craft fairs and through custom orders and she is donating $5 per pair of slippers to the Kids Cancer Care Foundation. We also spoke with several families at camp who are volunteering their time at various fund raisers the KCCFA puts on.

We decided right after diagnosis that the only way we would get through this is to keep a positive attitude and try to pass that attitude on to everyone we speak with. We have never asked “Why us or why Karlee.” There is really nothing that that question can accomplish that is positive or helpful. Everything we have written in our blog and posted on social networking sites has always been very positive. We have received tremendous support from our church, our friends, our community, the Alberta Children’s Hospital and the Kids Cancer Care Foundation of Alberta.

As a way to say thank you to people who have done various things for us we are giving out “Hope Stars”. We would like to ask Christine McIvor and Jack Perraton to join us. On behalf of our family we would like to present you both with Hope Stars as a thank you for everything the KCCFA has already done for us this early in our journey.

Thank you for the opportunity to speak to all of you and more importantly thank you for everything the KCCFA has done for families of cancer patients in Alberta. Does anyone have any questions for us?