When Michael was 20 months old, something changed. Suddenly he was not himself. He became fussy, seemed to be sick constantly and was not eating and sleeping like he used to. After weeks of this, I got a phone call from our day home provider, saying Michael would not get off the couch and that he had a fever. I took him to a walk-in clinic, thinking “We’d better make sure everything was okay.” The doctor looked him over and said he seemed to “Maybe have an ear infection.” At home, Michael was lethargic and I suddenly noticed that his unusual clinginess seemed to be related to the fact that he couldn’t withstand any weight on his legs. The next morning, we had an appointment with our family doctor. At this point, Michael seemed to have stiffened up much more and I was very concerned. The doctor did not even look at him. He told us to go straight to our local hospital.
At the hospital, they did blood work and told us he was anaemic, which could explain his fatigue. The leg pain was attributed to his last cold and that the viral infection had inflamed his joints. We left the hospital…still not feeling great about this.
By this time, I had called my mother. She is a nurse and so I asked her what she thought. I wasn’t sure if I was overreacting or if I should be listening to my gut instincts. She told me she wanted us to have him checked out at the Alberta Children’s Hospital. She too had noticed his downward spiral and didn’t like the fact that he was getting worse instead of better. It was already quite late, so I decided to see how the night went and would decide in the morning. My mom instincts were firing like crazy, but I didn’t want to be blowing things out of proportion either.
We had a terrible night with little sleep and further development of his symptoms. It seemed that just touching him caused pain and he would not bend or use his legs. When I went in to comfort him, he was soaked in sweat. As soon as morning came, we were off to the Alberta Children’s Hospital. Little did we know we would not be coming home for a very long time.
In the emergency room we were put to the top of the triage list and taken right back. They were very concerned. “Is he always this pale?” “When did he stand/walk last?” “How long has he been sick?” “Is he usually a sweaty baby?” I remember comments about his veins collapsing for no apparent reason, enlarged lymph nodes and a lot of bruising. He became a human pin cushion that day with seven IV attempts until one finally stayed. I was trying to remain calm. While he was sick, his symptoms were progressing quite quickly. After about 10 hours in the emergency room, we were moved up to a unit to wait for an MRI. We were told he would not be going home until he was walking again. While I didn’t like the idea of being admitted, I was finally starting to feel like everything would be okay in a day or so.
Once situated on the unit, many tests were run. Pain medication was given. Fluids administered. Blood drawn…constantly. Sometimes three or four times a day. An MRI was done and we were told there was a lot of inflammation around his knees. They did not know the cause. Finally, morphine was given to see if we could start getting the pain under control. On the fourth day, we still had not seen improvement. There was no sign of home and I was growing weary of the hospital and lack of sleep.
Suddenly a team of about five doctors entered the room. They asked us to sit down and told us they had found blasts in Michael’s recent blood work. As soon as I heard the word blasts I knew. The word cancer had not been said until this point. With all the knee problems, the idea hadn’t even crossed my mind. It turns out that the blasts were overfilling his bone marrow, creating pressure on his bones. The pain must have been excruciating for him. Unfortunately, this news came on a long weekend. We had a long three-day wait to confirm this diagnosis and to find out what type of leukemia Michael had. On Tuesday, July 3rd, his diagnosis was confirmed – acute myeloid leukemia (AML). I have no words for this day. Put simply, our world shattered.
Michael was scheduled the next morning for surgery to have a double lumen Broviac placed in his chest. This central line would allow his medical team to administer all the chemotherapy, blood transfusions, anti-nauseants and antibiotics. It would also enable them to perform regular blood draws for testing. We were very excited about this since we were starting to understand that the chemotherapy would make him better and having the central line meant no more needle pokes. The constant pokes, the isolation gowns, and of course the pain, had taken its toll on Michael. Now to add to his symptoms, he had become non-verbal. We were hopeful that the central line would decrease Michael’s discomfort and would make this experience more tolerable for him. In addition to the central line placement, we were told that they would do a lumbar puncture to test his spinal fluid for leukemia as well as a bone marrow biopsy to test the genetics of his leukemia.
The night was not good. It was our scariest night yet. His vital signs began to decrease. Oxygen saturation had decreased, heart rate had increased and his blood pressure was low. There was suspicion that pneumonia had set in. He was placed on antibiotics and chest X-rays were done. Add to this the pain and lack of sleep. I was becoming a pile of nerves. The next afternoon, my husband and I walked him down to surgery. Unfortunately, the progression of his illness caused him to code blue as soon as the anaesthetic was administered. He was placed on life support and sent to the Pediatric Intensive Care Unit (PICU).
I can remember sitting in the cafeteria and hearing “code blue” come over the intercom. I shuddered and said we needed to get back to his room. I did not know that the code was for Michael; but once again, my mom instincts were firing, and I felt that something wasn’t right. About 30 minutes after returning, the anaesthesiologist came back…without Michael. We were told what had happened and were brought to the Pediatric Intensive Care Unit.
And there was my baby. He had been placed under sedation and was on a respirator. He now had pneumonia and his lungs needed a break to heal and recover. The sedation meant he wouldn’t fight the respirator and would not be in pain. The respirator was breathing for him, so his could lungs get the break they needed. The bone marrow biopsy and lumbar puncture were done in the PICU, so he could get the chemotherapy immediately. In the darkness of the PICU, without windows and natural light, night became day and day became night as we waited for his lungs to heal and the chemotherapy to do its job. Time was meaningless to us.
After three days, he was showing signs of being able to breathe for himself. The strength of the respirator was gradually turned down over 24 hours until they were sure he could breathe on his own and be extubated. Two days after coming off sedation and off the respirator. we were sent back to the unit — our new home for the next seven months.
Things only got better after this. After his first round of chemotherapy, Michael went into remission. His body responded extremely well to the chemotherapy. Because of this, Michael did not need a stem cell transplant and he would be treated with five rounds of high-dose chemotherapy. After two months of physiotherapy and speech therapy, he began to walk and talk again. We managed to make it through five rounds of chemotherapy and seven months as an inpatient without any infection or further visits to the PICU. This was not to say our time was easy. Nausea, mucositis, fatigue and neutropenia took its toll on Michael. Neutropenia is low neutrophils, a type of white blood cell, which means his immune system was dangerously low and the simplest infection could be life-threatening. With each round of chemotherapy, the recovery became more difficult.
Our first introduction to Kids Cancer Care was during their weekly Pizza Nights at the hospital. Every Wednesday they would bring in delicious pizza for families on the oncology unit. This became tradition for us. It was our family night. My husband would bring my other son and we’d eat our pizza and watch a movie. It gave us the family time we so badly missed and NEEDED. It was on a Pizza Night that Michael walked again, on his own, for the first time since the ordeal had begun. I remember being beside myself with happiness and the Kids Cancer Care volunteers joined us as we celebrated.
Once Michael was off treatment, Kids Cancer Care gave us experiences we otherwise would not have been able to have. For the first year, Michael would have very low immunity. Even though we got to go home, public places were off limits for a certain period. In this time, Kids Cancer Care allowed us to partake in a morning at the Calgary Zoo to see the pandas. Everything was disinfected and we were allowed in before the public to decrease the risk to the children. We also participated in a wonderful Mother’s Day gathering at Camp Kindle. A day of skiing in February. The list goes on.
And then there is camp.
I will admit, I wasn’t totally sold at first. My oldest son Henry was four at the time and I didn’t see the need for him to attend since he did not have cancer and Michael was done his treatment. How wrong I was.
When going through an experience such as this, we all need our “tribe.” For me, it was my very close friends and family and my husband. I had incredible support from all of them. For my husband, it was our family and his friends. After the first day of camp, I saw that Henry had finally found his tribe. I had not realized how much coping he had left to do. This was a place where things started to make sense without there having to be a conversation. He was surrounded by this world of children fighting cancer and children who had fought cancer. Siblings of children who had fought cancer, were fighting cancer, or were bereaved. Despite everyone’s stories being different, they were making it. They were having fun. They were supported. The cancer world is filled with fear and instability. For Henry to be surrounded by this allowed him to finally find stability in the cancer world. We noticed a huge change in him after camp.
Our world will never be the same. We will never be the same. We do not know what lies ahead in the future. The risk has decreased with time; however, relapse is still a possibility for our future. This type of leukemia carries a very high chance of relapse. The incredibly high doses of chemotherapy that Michael received could have negative effects on his heart health as he gets older. We have been told that his eyes and hearing should be checked regularly. His heart will be checked for defects annually for the rest of his life. His risk of secondary cancer is also very high.
I have learned over the months that living in fear of the what-ifs, while necessary, is also a step backwards for our family. We almost lost Michael once. The what-ifs force us to lose him in our minds over and over again. So, for now, we focus on today. Michael is meeting his milestones and brings us happiness and joy every single day. We now have a three-year-old who has more empathy and love than I could have ever thought was possible. We know this has come from the love that was shown to him from family, friends and health care providers during his treatment.
My favorite thing that has come from this experience is meeting organizations like Kids Cancer Care. Knowing that there are organizations that fight for our kids, fund research and provide support is so important. Thank you for supporting this incredible organization.
~ Michelle Connor, Michael’s mother
Michael’s Photo Album