On August 10, 2019, our then two-year-old son, Luke, was diagnosed with type B acute lymphoblastic leukemia (ALL). His diagnosis was a complete surprise, as he was still active with seemingly unlimited amounts of energy. Before treatment, it was a very common occurrence to hear us say that Luke was the busiest boy out of all four of our sons. What took us in to see a doctor on the morning of August 10th, was increased bruising of unknown origin and small reddish spots on his body, which we quickly learned was petechiae.
The doctor told us to go immediately to the Alberta Children’s Hospital, who then sent us right to the ER. Prior to this, I had a feeling deep down that something big was wrong, but I didn’t let myself acknowledge this feeling. When we were sent right to the ER, my feeling was confirmed. We were triaged immediately. I had taken kids to the ER before, but I always spent time in the waiting room. With Luke we were taken to a room immediately after arriving, which was not comforting.
When the ER doctor came in, you could see on her face that she didn’t have good news. She said she needed to sit down and took a seat. It was a crazy, intense few weeks dealing with the shock of our child’s cancer diagnosis, while also learning all the information required as parents. Our oncologists and nurses were excellent at guiding us. We were told to think of this as a new beginning because everything was about to change.
Four days later, Luke began his induction stage of chemotherapy. We went with him to the operating room where he was anaesthetized. Luke had a bone marrow aspiration, a biopsy and a LP (lumbar puncture). The cardiologist also installed an IVAD (internal vascular access device) into his chest.
This led to our first encounter with Kids Cancer Care as they host Wednesday Pizza Nights at the hospital. Luke had just come out of surgery with his brand new IVAD and had his first dose of chemo. He ate a whole piece of pizza with a huge smile on his face.
On day eight of his treatments, a blood sample was taken for analysis to see how quickly his cancer was responding to treatments. Unfortunately, it was not responding as quickly as we were hoping. His blast cell count was above the MRD (minimum residual disease) threshold for low and standard risk patients. His diagnosis was elevated to a high risk and our very busy boy slowed down quite a bit.
Luke’s 29th day bone marrow sample showed that he was still MRD positive, by the narrowest of margins. To be considered in remission, he’d need to have less than 0.01% cancer cells present in his bone marrow sample. Luke’s number was 0.01%. We were really hoping for less and his risk was elevated again to very high-risk ALL. Thankfully, he was still considered a chemotherapy candidate and continued on to the next stage of chemotherapy – the consolidation phase.
Luke began consolidation, which meant he had a lumbar puncture every Thursday for four weeks to receive chemo in his spinal fluid.
During this time, we were introduced to an exceptional program, Hospital at Home, where a pediatric oncology nurse comes into our home to administer treatments. The program made a huge difference in our life.
In early December 2019, Luke had a fever and we went to the unit for bloodwork. Luke was severely neutropenic. This meant that his white blood cells, which fight off infection, were dangerously low. Because he was neutropenic and in the middle of IV chemo treatment, they admitted us that night and began IV antibiotics.
Luke had a high fever the next morning and his hemoglobin count was down even lower. He received a blood transfusion and we found out that Luke had respiratory syncytial virus. He was still very lethargic even after the blood transfusion, but he had perked up a little bit, which was good. After a week of antibiotics, sleep and steady improvement, we were able to go home.
Luke’s ANC (absolute neutrophil count) was not high enough to begin treatment prior to Christmas, so we didn’t have any planned hospital trips until the end of December. He had many delays throughout his treatment due to his ANC, which was quite worrying and frustrating. We considered it a gift to have Christmas at home with a break from chemo for Luke. He was mostly full of energy and he was able to enjoy Christmas at home without feeling the intense effects of chemo. We very were thankful for that family time.
By the end of December, Luke’s counts were high enough to resume the next phase of treatment. On the evening of December 31st, our primary oncologist Dr. Anderson told us the results were back. Luke was in remission!! What a relief to not have his risk category downgraded again!
He was able to continue on the very high-risk treatment protocol, which we knew would be a long and hard journey. If all went well, within three years he would be done treatment. We had received the best news to finish off 2019.
Luke started to have side effects from the chemo treatments, including very painful mouth sores and sensitivity to light. He was tired and we had lots of cuddle time. Luke turned three in early January 2020. It was a wonderful day filled with many laughs and joyful moments with his three older brothers.
Between January and March 2020, Luke had four planned 48-hour hospital stays. These ended up being four- to five-day stays due to various complications. It was hard being away from the rest of the family, but since it was pre-COVID-19, Luke’s father Pat, his brothers and other family members could visit him at the hospital.
Shortly after the COVID-19 pandemic was declared, in April 2020, Luke was admitted to the hospital for a fever. This was our first hospital stay where we were limited to only one parent and no visitors. Pat and Luke’s brothers, dropped us off at the hospital doors and we began our COVID-19 screening. It was in stark contrast to our previous hospital stays where we had lots of support and company.
Luke was in pretty rough shape. Our doctors thought it would be a good idea to begin TPN (where he is fed through his blood stream). They didn’t see his mouth sores getting better and they wanted to get a jump on the TPN as it gradually needs to be increased.
This first stay where he had no one but me to play with was tough. Luke was very sleepy and quiet and not himself at all. Once in a while he would perk up and chat on FaceTime with his brothers and dad. He really wanted to go home to play with them. You could tell he was in pain. It hurt to swallow and talk, but he wouldn’t ever admit it. He is such a brave, patient and wise little dude.
In the spring of 2020, we had so many delicious meals delivered to us by volunteers through Kids Cancer Care. It was a huge help, especially since everyone was in lockdown due to COVID-19 and our prior amazing support system was unable to assist us.
The summer of 2020 was a hard time for Luke and our family. He endured a lot of chemo and it was intense. For most of the first year of Luke’s treatment, he had a cavity that we had been trying to have fixed, but between low blood counts and mouth sores, we had to cancel four or five times. Between our oncologist giving the okay and our dentist offering to come do surgery whenever it worked for Luke, we finally got it done.
Luke also had a long chemo infusion that same afternoon. We spent three hours in the clinic, but by this time, he was just wanting to go home. With lots of help from our wonderful nurse Beth Ann and from child life, we made it through that long day.
Pat and I told our boys that we were having a party on the one-year anniversary of Luke’s diagnosis. They were a bit confused by this, not surprisingly, but we explained that his diagnosis changed our lives forever. We were celebrating Luke’s, and all of our, perseverance, faith, courage and strength in the face of a very unexpected mountain of a challenge.
Over the summer of 2020, during his last treatment phase and before maintenance treatment, Luke had a fever 48 hours after his chemo every single time. This required going to the unit for him to be tested. Depending on his results, we would either be able to go home after a dose of antibiotics or we would be admitted to the unit for varying lengths of time.
August 10th was the one-year anniversary for Luke and our family. We ended up needing to be in clinic, but we were able to have the party when we got home later that day.
We then went in at the end of August 2020 for Luke’s last treatment prior to the beginning of maintenance. We believed maintenance would hopefully be a bit less intense and much more predictable. Unfortunately, Luke developed a fever and he had to be admitted once again. He had another dreaded nasal swab and tested negative for COVID-19 a seventh time.
Luke began maintenance in September 2020. Maintenance is a three-month cycle that just keeps repeating until his last treatment in December 2022, three years after he achieved remission.
Luke has gained weight since he began maintenance, has higher energy levels and is more playful than before. He began a therapeutic exercise class called PEER through Kids Cancer Care. PEER has been very healing both physically and emotionally for Luke. He always asks when he can go again.
Through Kids Cancer Care we were able to spend Thanksgiving 2020 at Camp Kindle. We had the whole place to ourselves. It had been our first family trip out of Calgary since diagnosis. It was a beautiful weekend for our family.
The first bit of maintenance involved more hospital visits as we tried to find the appropriate treatment for Luke. To this day, Luke still plays hard whenever he gets the chance!
Luke was at the clinic the day before his fourth birthday and Cindy, our lovely child life specialist, and our great nurses had a little birthday celebration for him. Even as a newly minted four-year-old, Luke is absolutely one of the most courageous people we’ve ever known.
The first two and a half months of 2021 were mostly a blur for us. Maintenance wasn’t going well and Luke wasn’t himself most of the time. We weren’t sure what was causing his discomfort. Normal activities seemed to take a big toll on him and he became exhausted and very irritable. It was difficult for everyone. Our oncologist scheduled Luke for an MRI to try to determine what was causing him pain.
Luke was a total superstar and did awesome in his MRI! Kim, the child life specialists from Kids Cancer Care and the hospital, and Caro, the exercise specialist with Kids Cancer Care, put a lot of energy and love into helping prepare Luke for his MRI. Thankfully, it was good news; the MRI came back normal.
We were able to go back to Camp Kindle again in early February. Luke resumed attending his PEER exercise class with Kids Cancer Care since they opened back up for the one-to-one PEER sessions. Through this class, his confidence has been greatly boosted after cancer treatment as clinic appointments, hospital stays and side effects had consumed most of his life.
The support from our family and friends was nothing short of miraculous. We were given so many meals, help with our other children, grocery shopping and so very many donations. We are overwhelmed with all the love we were shown by those closest to us, those we have never even met and everyone in between. The beauty of humanity has never been so evident to us as it has been these last 19 plus months.
Our older boys Malcolm, Dominic and Thomas have been huge champions for Luke and they too have been involved with Kids Cancer Care.
The people at Kids Cancer Care are truly awesome. They not only support the child with cancer, but they also care for the whole family. We are so grateful for their continued support for our family as we soldier on in this new life.
~ Erin, Luke’s mom