Kellan is our miracle child — literally. I was previously married and have a beautiful daughter who was born in 1989 – Jazmine or “first born” as I like to call her. I always wanted Jazmine to have a sibling, but in 1995, I was in a bad car accident and both of my fallopian tubes were damaged. Me and my “then husband” kept trying but unfortunately I had four miscarriages and one tubal baby, before my doctor said, “That’s enough, stop trying. Its putting you through too much stress and disappointment.” I then sought out a fertility specialist and was told that with my tubes, there was no chance for a baby, so I was to deal with never having children again. My marriage fell apart in 2001 because he wanted a full house and I couldn’t give him that. I met my husband Jason in 2005 and told him I was barren, before we even got serious but he said I was more than enough for him. We were married in March 2007. In January 2008, I was very sick in the hospital with costcochronditis and needed medicine for a couple of months. Something that would not go away was the nausea, so on a whim, the doctor said, “Let’s do a pregnancy test.” I found out I was pregnant with my second child. I was 40 and having my second child; what a miracle. Our son came into the world in September 2009 and we named him Kellan, Gaelic for The Mighty Warrior, not knowing at the time how fitting this would be.
From October through Christmas in 2014, Kellan kept getting fevers, rashes and colds. We were on a family vacation in November in Cabo San Lucas – a Christmas present to all of us. Our daughter, being much older, doesn’t travel with us often, so it was really great to be together and we were really enjoying ourselves. Kellan loves to swim and swam a lot on our vacation, but he was freezing in the water, when it was plus 30! His lips would turn blue. He was also frequently having night terrors.
Kellan’s ears had been hurting on the whole flight home, so when we got back to Calgary we took him to a walk-in clinic, as our doctor’s office was closed. They told us, he had an ear infection, probably from too much swimming. Kellan took medicine for a week but still wasn’t any better. About this time, I also started noticing that he had very small dots and bruises on his legs. I took him to the walk-in clinic again. It was a weekend, and again, the doc said, “No worries about these signs. It’s an ear infection.”
Not longer after, Kellan and I were at a birthday party with his friends. I kept looking at him thinking, “He’s off. Something isn’t right.” Mom’s gut was saying, “Let’s check this out further.” I thought, with his white skin and lips, he was diabetic, which to me was very scary. Jason was out of town with friends at a poker tournament, so I picked Kellan up, left the birthday party and went straight to the South Health Campus Hospital. They admitted him into ER pretty quickly, as I explained all of the signs.
The ER doctor happened to be a pediatrician and came right away to see us. She wanted blood work!!! So with Kellan screaming at the top of his lungs, I held him down, while they did several withdraws. He was so upset at me, but I needed to know he was ok.
About an hour later, the ER doctor said, “Do you have family who can come to sit with you?” I said, “Well no, my husband is out of town. My parents live here, but I’m ok with you letting me know what’s going on.” She didn’t really respond and said, “I’ll be back.” Then a social worker came in and introduced herself. My mind thought, “They think I caused the bruising. They are sending a social worker.” All of the movies I’ve seen with a social worker means abuse, so I talked nicely with her and she said, “I’m going to sit with you until your family comes.” I said “I haven’t called my family; do I really need them here?” and she said “Yes.” So I texted Jason that they wanted him there. He was just outside Lethbridge and had carpooled with friends, so he had to figure out a way back into Calgary. I texted his parents and my mom, asking them to come too. I sat there with a very upset little boy and waited.
Finally, everyone arrived and the ER doctor came in and said, “Ok. Here’s what’s going on.” I had Kellan in my arms and he was still crying, so I couldn’t hear ANYTHING being said, but her lips were moving. Then I saw my mom fall into the chair. That’s an image I will never forget. I said, “Will someone hold Kellan, so I can understand what’s going on.” So Jason picked Kellan up and the ER doctor looked at me and said, “Kellan has leukemia.” Without having time to think, she said, “We need him at the children’s hospital ASAP, either by ambulance or you need to leave now.” On our way to ACH we went. My brother went to pick up my daughter, who was living in Canmore, as we didn’t feel she should be driving on the highway after we told her about Kellan.
We were admitted and Kellan was further tested to confirm that he did have leukemia. The results came in and confirmed that he had acute lymphoblastic leukemia. The blood tests all day long were the worst imaginable. I had to literally lie on top of him to keep him still, so they could do it. The next day he started on chemotherapy.
Being deaf hugely compounded everything for Jason and I. The hospital does not have interpreters, so every time the doctors and nurses would come and talk to us, we had no clue what they were saying.
After being admitted, Kellan immediately turned for the worst, getting pneumonia and RSV and another infection, so he was put in isolation, which meant EVERYone coming into the room had on a mask. Now, 80 per cent of my “hearing” or understanding is through lip reading, so with the masks that was taken away.
They would ask us to go into the doctors’ rounds (meetings) and we said there is no point, we can’t hear you. Jazmine, who was living in Canmore, would come into Calgary and go to all the meetings, take notes and record the conversation. Then she would transcribe all the discussions, so we could read them. We weren’t able to learn about what was happening until two days later: a day for her to go to the meetings, then write them out and travel back and forth from Canmore. We never knew what was going on at any time.
Jason and I were sitting in the waiting room, while Kellan was in surgery for his chemo port and a doctor comes out says, “Are you the deaf parents?” Then he tells us, “Just use the cream and give Tylenol and he can go home today.” Jason and I look at each other, puzzled, and asked, “What?” The doctor asked us again if we are the deaf couple – “YES!” “Ok, well the circumcision went great. Just use the cream for his penis every day.” We just about fell over with worry over what they had done. Apparently there was another deaf couple in the waiting room sitting right behind us. Oh how we wished that was the surgery Kellan was in for that day.
We had to book our own interpreter for all meetings, but we needed at least two or three days’ notice, which was impossible with the hospital schedules. So meeting changes would happen and we would lose our interpreter, who wasn’t able align with new times. Last minute, we would ask a hearing friend to come and help us. Fortunately he could sign.
We did have one nurse, who wasn’t on our shift often, but she knew sign language. You can imagine how much that calmed us. Whenever something was going on, she would sit on the bed with us and sign the information! We asked for her often, but her shift didn’t always line up and we only able to get her twice.
One morning at 2:00 am, I was asleep on the couch in the room and all of a sudden a bunch of doctors with masks rushed in. They said something to me and then wheeled Kellan’s whole bed out. I was barely awake and had no clue what they said. Then a nurse came in after and I said, “Please help me out.” She explained that Kellan was having troubles with his heart and breathing and they were taking him to ICU ASAP. I ran as fast as I could to follow them. 2:00 am!
In ICU, they put a full oxygen mask on Kellan and the doctors were madly trying to find the right recipe of antibiotics to best ensure he made it through the weekend. Kellan fought the mask and the doctor said, “You need it to stay alive.” He was strapped down. A mother’s worst nightmare – chemo, oxygen mask, feeding tubes and restrained arms. After a couple of days in ICU, they were ready to take off the mask but Kellan wouldn’t let them. To him, that’s what was keeping him breathing and alive. Slowly they turned it off, and even disconnected it, but he still kept in on his face. In ICU they also had his arms in straps as he would freak out easily but now back in unit 1 his arms are free and the first thing he does is curl up in a ball in fetal position and go to sleep. The ICU doctor tells me, “He’s a stubborn little guy, but you know what? That’s what will pull him through all of this.”
Every time the door opens to Kellan’s room, he panics, not knowing who is coming through to do what to him. The first time he saw a lab tech come into the room he started crying as usual and they said, “Watch this Kellan. No needles at all,” and they drew blood from the port. He started laughing, a sound I had so longed to hear! Kellan was starting to know by the colour of their coats if they were A) just going to look at it B) going to take blood C) coming to clean the garbage out, and he would react accordingly. He loved the blue uniforms — garbage only!
We were released for the weekend, just a trial period. Kellan was so excited, but my Momma heart was terrified. I was now in complete charge of his care. What if I made mistakes? I must have gone over procedures and medication with the head nurse 10 times. We even made a chemo chart to track all of his meds and used stickers to mark when we had completed each dose. We got home and Kellan tried to walk to the living room and he fell right away and said “Mom my legs don’t work anymore,” and started to cry. I then joined him on the floor, doing the same.
In March, Kellan started a new medication, which seems to have kicked in fast. Yesterday, he was complaining already of his knees giving out while walking and it was the first time since leaving the hospital that he was sick. So we are now riding a wave of chemo, puking, pain, crying, steroid rages and snuggles. Of course my little man is as brave as ever and usually just yells, “Mommy! I’m going to get sick!” and grabs a tray from our kitchen nurses’ station, gets sick in it, turns to me and says, “You better wipe down the chair too as I missed a bit.” Then he carries on playing. No tears (except from me) and on he goes, playing with his Lego! He’s also learned to use his sense of humour to calm me down. One day he’s yelling, “Mommy! Come quick! I’m getting sick!” so I ran into his room and he says, “My tray is full,” and pretends to drop it on me. As I jumped back, I look at the floor covered in Skittles. He’s got my sense of humour.
The road is long but Kellan keeps bouncing back. On June 28, after his third day in a row of chemo, he’s throwing up and experiencing pain from his port. His legs are weak and his stomach is in knots. With a fresh dose of chemo in him, he goes outside and hits some baseballs!! UNBELIEVABLE, this kid. Everyone says how strong we are but Kellan is the strongest little fighter I will ever know. On one of the worst days yet at the hospital (port access, spinal tap, 3 types of chemo, 4 hours of rapid hydration and 11 hours in total at the hospital) after being released, Kellan goes to the driving range to hit some balls and I go home in a shirt bought from the hospital gift shop, as I’d caught all that “nausea” on me!
The chemo is also doing its best to give us the extremes in his personality. Kellan can be laughing and playing with you one minute, then minutes later, he’s tucked under my legs scared of everything. Talking with his child life specialist, psychologist and doctor, I am reassured that this will be the new normal, while he is on chemo. It’s not him or his personality. It’s the medicine reacting with the balances in his body and brain. Steroids are the worst for this too. One day full of Dexamethasone, he gets upset leaving a restauran and runs straight into the parking lot. Kellan, never more than 3 inches from my side, bolts onto the road. I yell to him to get on the side walk as there are cars coming and he says, “It doesn’t matter, I’ve got cancer and going to die anyway, let them hit me.” You can imagine the dagger through the heart as this came out of my six-year-old’s mouth. My heart breaks whenever I think of all the emotions and feelings my little guy is going through when all he should have on his mind is his friends, his games and his dog.
Kellan’s cancer has changed so much. This was our miracle child. Our everything. So many things we wanted to do and share together. Now every ounce of life and energy we have goes into this fight to keep him alive. We were very active and healthy people before diagnosis and then found we weren’t even looking after ourselves anymore. We weren’t getting real sleep and even our marital relationship had suffered. We are only partners, united in the fight, trying to keep everything together. We had forgotten our own story. Being deaf, we also can’t hear if Kellan is getting sick in the middle of the night, or crying in pain, etc., so one of us always sleeps with him in his room – for almost 3 years now!
Sleep was not something we had for the first whole year of this journey. Kellan had extreme separation anxiety and anxiety of people. Even people he knew and loved could not be in the same room alone with him or he would freak out. So, again, everywhere we went, one of us always had to be with Kellan, which meant no breaks. The only respite we got was with his grandparents, who he was comfortable with.
Both of us took a couple of months off work at first but eventually we had to get back to work. My work allowed me to move my office from the corporate building to our home, so I could be there with Kellan. My work was incredible. Giving me this flexibility was huge. Jason returned to his normal hours but took time off for Kellan’s clinic appointments.
We used to be much more spontaneous; now we have to think everything out: Where we are going? How many people are there? Will Kellan freak out or be comfortable? How long will we be away from home? What is the chemo schedule? You see, he can’t eat 2 hours before his daily chemo and one hour after, therefore we have to plan and time all meals exactly and watch to make sure he doesn’t sneak in even a juice or cracker during this 3-hour fast period – EVERY day. Then on Thursdays he has 18 pills of chemo! We can’t travel anymore, which was one of our favourite things too, especially travelling to see family and to see Kellan’s grandparents in Palm Springs yearly. We stay within one hour of ACH, as the one time we attempted to travel, Kellan got fevers and very sick within a day, so we don’t chance it anymore.
The biggest shock for us was people. Today, our circle of trust is much smaller. One of the hardest things to go through on this entire road is the feeling of isolation and loneliness. But we made new friends, mostly other cancer parents we met at Kids Cancer Care events and camp. These people are our extended family and get us through a lot of rough times as we do for them.
Our daughter Jazmine made us very proud. She would come out from Canmore to Calgary to help out with all meetings, etc. She was my rock when I was breaking down in Kellan’s hospital room, crying, my head on her lap, sobbing. Another great turn was that Jazmine has decided to go into nursing and is now going into her third year. She’s on the dean’s list with amazing marks! She moved back to Calgary, so she could be with Kellan more often, but with school, her head is rarely out of the books. When they get together, it’s an amazing bond. You watch with your heart full.
Our first encounter with Kids Cancer Care was in the spring of 2014 for Family Camp at Camp Kindle. We were only 4 months into treatment. Almost all the families were on maintenance or off treatment, so we were pretty new to this. They all opened their arms up wide and brought us in. The reality is, we had not been apart from Kellan since January 11, 2014, not one hour, and now he was going off with a Kids Cancer Care volunteer, who apparently was going to play and then put him to bed. Jason and I looked at each other and said, “Yeah, right.” With a wave and a smile, he said, “Bye Mom,” and walked away with volunteer Brad. Now this was the first time meeting the cancer parents and Kids Cancer Care for us too. Camping is one of Kellan’s favourite things, and without Camp Kindle he wouldn’t be able to do it. They also have Unit 1 nurses that he knows on-site at Camp Kindle, which helped Mom’s anxiety a lot. The serenity of the camp can’t be put into words. I’m a Pisces and sitting by the pond, watching the ripples, is cheap therapy.
Getting families out in nature at Camp Kindle where you feel safe, because there are nurses on-hand and where you feel welcome and comfortable, as your kids are going through the same thing, is huge. It feels like you have another family that has your back and you can enjoy things in life, with the right people, without feeling guilt.
Kellan tried SunRise day camp twice, but wouldn’t let me leave him alone there. But he’s been to Family Camp with us three times. It’s great for him to get away from the hospital and house. He loves the bunk beds and the freedom to run around the grounds. Kellan’s a nature kid, so he loves the pond and fields. He is happy there.
At SunRise day camp the first time, Kellan didn’t know what to expect. He was hesitant as they were so many kids. I told him, “It’s ok, these kids are just like you and they don’t care how little hair you have, or that you are sick.” He found a friend right away, former Calgary Flames Curtis Glencross. He just grabbed his hand and said, “Help me make these crafts.” I will never forget one mom looking at me, knowing I was worried as I tried to get Kellan to join the group. She said, “Its ok. I stayed in the parking lot and read books all week our first year. You don’t need to leave if you don’t want to.” So the parking lot is where I stayed. J When Kellan came out with a tiger painted on his face, I knew he was ok. He’s never let anyone paint his face before and then I see this ferocious TIGER coming at me.
Jason and I also participate in the Dragon Boat Races every summer with other cancer parents we’ve met through Kids Cancer Care. Rowing and training together with other cancer parents for two solid months each summer builds an incredibly strong bond between us. We’ve also been to Mother’ Day Brunch, kids’ cooking classes, parents’ cooking classes, Family Ski Day and, this past summer, I volunteered for the Tour for Kids Alberta, which was spectacular.
So you wonder what Kids Cancer Care does for a family. In short, it gives them their life back. I have never known such isolation as I have with this disease. It’s really like living on an island with no boat. Kids Cancer Care gives us the boat-ride back in. They have given us another family, one that understands what we are going through and a support system when we are tired. It gives us a chance to give back too through fundraising events like Tour for Kids Alberta. We honestly care about everyone affected by childhood cancer, so we do many charity events to raise money. I need to help other families in our situation if I can.
Kids Cancer Care is making a huge difference in the quality of life for kids and families in the world of pediatric cancer. It’s too easy to be forgotten and left on the side to deal with the depression, the overwhelming hospital appointments, the loss of close friendships and how to cope with all of it without losing yourself.
Kellan is now in his cycle 9 of his 12-cycle maintenance phase. He just started grade two. He is learning to be a little more independent and less anxious. Last year, it took us 2 weeks for Kellan to adjust to being at school without me. This year it took 20 mins. When on steroids, his moods are unpredictable, but when he is off them, he’s pretty much a normal stubborn six-year-old. He’s not a big eater, so he needs to eat more to gain weight, but he is growing in height a lot. He is very grateful for his family and friends and talks constantly about them — especially his girls. If anyone knows Kellan, they know he has a following of pretty special girls who are always at his side. He still hates the medicines daily, but he opens up his mouth on the count of 10 every time, without fail. We still have to watch for fever, germs, colds, coughs, etc. and pull him out of school whenever his counts drop or if kids in class are sick.
He is swimming again but at private pool. The Deerfoot Inn graciously lets him swim at their pool whenever he wants to. They let us know when they have less occupancy and when there are little to no kids in the pool. They also hosted his last two birthday parties with private pool and suite for the meals, so he didn’t have to be in the public restaurant. They make a little boy very happy, as swimming is his favourite thing, and a Mom very happy, as this helps shelter him a bit from public germs. He also played baseball last spring and summer.
Based on our schedule, maintenance phase will be done March 20, 2017 – which is also my birthday!!! There is a mile-long list of potential side effects, but we won’t know until we see them. For now, he is showing the leg and knee pain and skin rashes from major eczema. His energy is depleted, but we hope all of the other possible side effects stay at bay. Hearing loss, vision, cognitive issues, bone issues, kidney issues….they can stay away. We are all very excited for this milestone to come, but I’m honestly terrified too, thinking about taking away the safety net of chemo to keep those cells away. I’ll have to learn how to live “normally” again.
It amazes me how strong a kid can be! What a warrior. He wakes up, pukes, wipes his mouth and then goes to school like nothing happened. I know how much I loved him before this experience, but I didn’t know that love would keep us fighting the fight with so much power. It definitely knocks us out some days and we want to forget all about it, but other days, we are proud of what we have accomplished together.
I try not to show weakness. I keep myself focused on Kellan, so I don’t become a ball of tears. I save the tears for when I’m alone. We’ve had to be adaptable; we have to change things on the fly a lot. We may be leaving for a birthday party and then get a text that someone has a cold, and we have to change our plans and not go. This affects Kellan emotionally, as he looks forward to seeing his friends and then has to turn around and go home.
When I ask Kellan what he wants to be when he grows, his 100% honest answer is, “Just me Mom. I wanna’ just be Kellan, wherever that leads me” and then he adds, “Happy.”
Bless his heart.
I’d like to leave you with a poem that a tired, an insomniac mom once wrote – ME. I have found that it actually connected me to a lot of cancer mom’s going through this same thing.
Can you dream a little dream tonight?
Can you dream a little dream tonight?
One that when you finally open your eyes
Your reality matches your thoughts
Where time has healed your painfully open wounds
And you are grateful they are behind you
Where you are able to laugh and smile without guilt
And know you are ok to breathe again
Where you hear the laughter of your child
And not worry, will it soon disappear?
Where your thoughts are on the present
Your nightmares are in the past
Where you are not afraid to see the future
And shine in all of its glory
Where you can joyfully skip down a path
Knowing it leads back to one another
Where the heat of the sun bounces off your face
And you know your roots will flourish
Where time does not need to be sped up
But rather enjoyed minute by minute
Where your child looks at you,
Not in fear of what comes next
But in awe of the beauty and strength with what he was raised
Dare I close my eyes and drift off
Will I awaken trembling in fear?
And knowing this was all but a dream
Why can’t it all be true
It’s so easy to imagine
Yet so hard to achieve
Please let me dream a little dream tonight
That’s alas, not a dream after all
—Robin Buck, Kellan’s mom
