Our cancer journey began like many families whose children are diagnosed with leukemia – with symptoms and signs that we initially discounted as common, normal ailments of childhood. There were no red flags, no reason for cancer to even be a blip on our mind. But looking back now, we can pinpoint the start of Foster’s cancer journey.
The Holiday Curse
When Foster was three years old in November 2015, we took him to a pediatrician for leg pain. It was only in his left leg, the leg he’d broken about six months earlier. As a precaution, we had X-rays done. Everything came back perfect, so the doctor thought it was just growing pains.
Fast forward a few weeks. December 25, 2015, Christmas morning. There was no 5 am wake up call to see if Santa had visited. In fact, we had to wake Foster up and bring him downstairs because he was so tired, feverish and nauseous. He spent the whole day on the couch barely able to open more than a couple of presents. It was sad to see him like that on Christmas Day, especially since only eight months earlier he had broken his leg at Eastertime. Two major holidays and Foster was out for the count, unable to enjoy these special occasions!
On January 6, 2016, Foster turned four years old. There was cake, balloons, presents and sickness again. What we thought was just the flu, seemed to come and go since Christmas. It wasn’t too concerning at the time. Tylenol would bring the fever down. He would have a bad day or two, but then he’d bounce back to his regular self. Illnesses always seemed to hit Foster the harder and he took longer to recover, so it wasn’t out of the ordinary for him. We started to think he had the holiday curse!
A short while later we booked a family vacation. We didn’t want the holiday curse to continue, so we decided to take Foster to the doctor for a check-up to make sure he was clear to travel. The doctor checked him over and seemed to think he was at the tail end of the flu. It was safe to go on our vacation. Whew!
We headed off on our vacation and arrived with two bouncing excited kids. The first few days were absolutely amazing, though Foster seemed tired and irritable. Then it happened, Foster got ill again. Fever. Cough. Headache. Runny nose. Nothing serious we thought. Just another cold from travelling and being run down from the first few days of vacation. He spent the next couple of days in the hotel room. Timing just wasn’t great for this little guy. First Easter, then Christmas, then his birthday, and now vacation was a bust.
It seemed like he might have a sinus infection, so we took him to a clinic to make sure he would be alright to fly back home. They assessed Foster and asked the questions we got all the time: “Is he always this pale?” “Does he bruise like this all the time?” You see, Foster has oculocutaneous albinism, which means he has lower levels of melanin. Among other things, this means he has pale skin, which means his bruises are more pronounced and noticeable. The doctor came to the same conclusion. It was a sinus infection and we left with antibiotics. As soon as he had the antibiotics, he instantly looked and felt better. We were ecstatic to see him enjoying a day or two of fun, before leaving for home.
The Unbelievable
After a long flight, we arrived home the morning of January 26, 2016. Both kids were exhausted, but Foster seemed to be feeling much better, until the next day. He woke up complaining about his leg again. We just wrote it off as growing pains again because he just had a clear X-ray a couple of months earlier and there were no visible signs of anything wrong. No redness. No swelling. No bruises. Nothing.
This is where a date, January 28, 2016, becomes permanently etched in my mind. I remember every moment of that day – dropping the kids off at school and preschool, picking them up, taking our daughter Kaidence to skating lessons, Foster and me watching her from the stands. Though, that night was different. Foster’s leg pain seemed to be getting worse. He could barely walk on it. During the skating lesson, my husband picked Foster up and took him to the Alberta Children’s Hospital. We thought, “It must just be a complication from when he broke his leg. What else could it be?”
What else could it be? That question will haunt me forever. My husband and Foster arrived at the hospital around 7 pm. Brian sent a cute picture of Foster waiting in the ER, then an update, “We’re just waiting for X-rays.” Then, Brian got those horrible words first. I can’t even imagine what he was going through by himself in the ER when he heard those words, “Foster has leukemia.” When Brian phoned, I thought he was joking around when he told me to sit down. You see Brian is the family jokester. He is always making us smile, even with his lame daddy humour. But I quickly realized from the crack in his voice that this was serious. I will always remember that moment, when I could hear the pain in his voice, telling me that Foster has leukemia. My brain, my heart, still wouldn’t process it though. I must have told him multiple times, “This is not funny. This can’t be true. This cannot be the ‘what else.’”
The New Us
“What else” turned out to be high-risk B-cell acute lymphoblastic leukemia. Leukemia is a cancer of the blood that starts in the bone marrow. The leukemia cells invade the blood quickly (acute) and if not treated, they could be fatal within a few months. These leukemia cells were overcrowding Foster’s blood system and his blood just couldn’t function or develop properly.
When Foster was admitted that night, his immune system was non-existent. His little body had no defense. That leg pain? An infection in the joints of his foot. Those bruises? Low platelets. The fatigue? Low hemoglobin. All of those flus and sinus infections? Illnesses that he couldn’t fight off adequately. My little one was going through so much and we had no clue.
Within a week, Foster had three surgeries, MRIs, ultrasounds, ECHO and EKG exams, two blood transfusions, IV antibiotics, a bone marrow aspirate and his first IV chemotherapy. His leg, or actually, his foot was getting worse. The antibiotics weren’t helping and they needed to flush out the joint to remove as much infection as possible, before it moved into the bone and into his whole system.
It was possible we were too late, that Foster just wouldn’t be able to fight this off. The guilt is still with us to this day. How did we miss the signs? Why didn’t we do more?
It seemed ridiculous to me, that we were going to start treatment when he was still fighting the infection in his foot, but now I get it. Now I realize that every day that we didn’t start killing off the leukemia cells was another day that Foster might not respond to treatment. The infection in his foot was now physically visible. It was red, swollen and hot, it was real. The leukemia we couldn’t see, but it was worse. Time was of the essence.
February 1, 2016, the first day of treatment – the first day of what will be over three years of treatment. In walk two nurses, although they looked more like blue aliens. They were wearing what looked like blue hazmat suits – gowns, masks, eye protection, gloves. One carried a small plastic pouch. The pouch looked innocent enough, like antibiotics or something, but it contained volatile poison. They checked and double checked the ID bands. They hooked up this “medicine” to Foster and it broke my heart. Our 30-pound little boy was getting chemotherapy. This doesn’t happen to little kids. This is now our new normal.
It was possible we were too late, that Foster just wouldn’t be able to fight this off. The guilt is still with us to this day. How did we miss the signs? Why didn’t we do more?
The Frontline
Our new normal included hospital admissions, febrile neutropenia (fever and low immune system), lumbar punctures, chemotherapy port placement, tests, scans, blood transfusions, antibiotics, steroids, IV chemotherapy, intrathecal chemotherapy, oral chemotherapy, bone marrow aspirates, physical therapy, occupational therapy, neuropsychological evaluations….
Our new normal meant being isolated most of the time. Isolation in the hospital and isolation at home. There was no school, no play dates, no events, no parties, no playgrounds for Foster. There were lots of disappointments, cancellations, fear, loneliness for Kaidence. We couldn’t plan anything because we never knew when we would end up in the hospital with a fever or infection. We couldn’t run errands or have friends over because the risk of infection was too great when Foster was neutropenic (extremely low immune system).
We now have anti-bacterial gel in every room of our home. A suitcase pre-packed and ready to go at a moment’s notice for admissions to the hospital. The first sign of a cough or runny nose and that person is isolated in a room until there are no more symptoms. Our family is strong, but more often than not, we weren’t able to be all together at the same time. One parent was always at the hospital with Foster and the other at home with Kaidence.
The frontline is intense. For us, it lasted about ten months. Every day felt like we were walking in a field of land mines and we were doing our best avoid them. In those ten months, Foster had multiple infections, which required IV antibiotics and hospital admissions. Each one just as scary as the next. The possibility of having to delay chemotherapy was real, as was the possibility that he may never recover from the infection. If the leukemia itself didn’t take Foster, the infection could. Every day felt like we were walking in a field of land mines and we were doing our best avoid them.
The Future
We made it though. Foster is now in maintenance, which consists of 12 cycles (each about three months long). We reached the maintenance milestone on November 10th, 2016. For the first four cycles of maintenance Foster takes oral chemotherapy every day, a steroid pulse for one week each month, intrathecal chemotherapy via lumbar punctures once every two months, IV chemotherapy once a month and IV antibiotics once a month. We reach cycle five this October, where everything is the same except he has intrathecal therapy by lumbar puncture only once each cycle.
Foster was able to return to school during maintenance. Now we’re able to venture outside the house without worrying so much about the land mines. They are still there, but not as many. But Foster has still missed more than 50 per cent of school days due to hospital appointments, illness and infections. Now, the hospital visits are less about the chemotherapy and more about the effects of chemotherapy on his body and mind.
The future is scary. The survival rates and relapse rates for his type of leukemia are scary. The late effects of chemotherapy are scary. Everything is now scary to us, be it a bruise, a low fever, a runny nose, a bump, a rash, a cough. Anything can send us into panic mode.
But the future is also brilliant. We have two wonderful, amazing little kids who you can’t but smile and be happy around. Their inner happiness and brightness just radiates and it is contagious. I can handle that kind of contagion. Every day is a day we are grateful for having our children with us. I know the future holds great things for both of them. They are going to do great things. They are the future.
Thank you
Brian and I, our family and our friends had no previous experience with childhood cancer. It was like we were suddenly on a lifeboat, drifting in the ocean, trying to find a place to land. We were isolated. When you have two very social and extroverted children, this is heartbreaking.
Even in Foster’s current phase of treatment, maintenance, there are still many birthday parties, play dates, school days, events that have vanished. But that is where Kids Cancer Care comes in. Both Foster and Kaidence went to Camp Kindle this year for the first time. Seeing and hearing them connect with other children and siblings is something I will never forget – and neither will they. Kaidence cried on the bus ride home from Camp Kindle because she didn’t want to leave!
As you can imagine, I have struggled with anxiety since diagnosis. Both Foster and Kaidence have been next to me, or next to someone I absolutely trust, every second of every day. There is no way I would even consider sending Foster or Kaidence to any other camp. Camp Kindle is our family’s island where we dock. Knowing that both kids were in amazing hands at Camp Kindle helped me to let go. Just a little. Well, maybe just a millimeter. And that is thanks to the many generous people who support Kids Cancer Care.
No one wants to be a member of the kids’ cancer club, but I have to say the members are the most wonderful, caring, generous, heartfelt people I have ever met. From the cyclists in Tour for Kids, to the staff and volunteers, to the families, the businesses and donors, you are beautiful. Without you, we would still feel isolated. But because of you, we feel and experience understanding and inclusion. From isolation to embracement, all because of you. Thank you.
~ Candace, Foster’s mom
