The following is a written statement that the family of Makayla Sault read aloud during a Forum at McMaster University in February of 2015. It is written here in its entirety.
“Our hearts are broken by the passing of our daughter. Makayla’s decision to stop chemotherapy in April of last year and our decision to support her in that choice has been the subject of great controversy. Much of the information reported in the media about her condition, her treatment, her life and her passing has been untrue. It hurt Makayla to hear these things said about her by the national media. It hurt our family, our community and indigenous people across the country to know that Canadians believed what the media were telling them.
The controversy, attention and inaccurate reporting have caused our family so much distress we have not been able to truly mourn Makayla. In many ways the last thing I want to be doing right now is sitting here in front of you and hearing the public, the press and everyone discussing her life and her illness and our loss. No one has the right to pass judgment. Because you were not there the days we watched our daughter suffer in the hospital on chemo. But I am here to speak on behalf of my daughter and my family with the hope that the public knows the truth about who Makayla was, about her choices and who we are as Annishnabe people. This is one of the ways that I can honor her.
I’d like you to know who Makayla was. She was a dancer, gymnast and lacrosse player. And an active leader of Chosen Kidz. She was always wise beyond her years. She was precocious in so many ways and understood the world, and other people and herself more than we ever thought a girl her age could.
She loved her community and her people. She usually had an opinion about things and she was seen as a leader by her peers, her teachers and members of her community. She was young and playful but her intelligence and her maturity were remarkable.
She had a strong faith and many spiritual encounters. By the time she was eleven years old Ken and I had come to respect her autonomy and her insight. We grew to respect her even more when we saw the courage she brought to her illness, to chemotherapy and how she lived the last year of her life.
Makayla was diagnosed with a rare, aggressive form of Acute Lymphoblastic Leukemia with a Philadelphia Chromosome just over a year ago on January 22, 2014. We were told that with aggressive chemotherapy over the course of two and a half years, and one chemo continuing for five years or more, she would have a 72% chance of survival. Not 90%, not 95% – 72%.
This percentage dropped even further when we learned that children of indigenous descent do not fare well on chemotherapy. We also learned from doctors at McMaster that chemotherapy is less effective and more punishing for indigenous children. The reasons for this are ‘not well understood’ we were told. In other words – she had a 1 in 3 chance of dying from leukemia with the chemotherapy.
We were made to feel there were no other options so we began treatment. Makayla was part of every conversation with medical staff. In every treatment decision she understood the advice that the doctors gave us and voiced her opinion often about what should happen and how it should happen.
We were told by the hospital that Makayla would likely suffer from nausea, mouth sores, hair loss because of the chemo and this is all we were told. We were assured that these side effects were minimal and that there were drugs that were effective in counteracting these side effects.
Chemotherapy took a horrific toll on Makayla. We know that chemotherapy is not easy for anyone, but for Makayla it was devastating. In her third week of treatment she developed a blood infection and went into septic shock. That was the first of four severe infections she experienced while on chemotherapy. She was not just nauseous but violently ill and not able to keep any foods or liquids down for weeks at a time.
She became so weak she could not stand or even sit up at times. Her voice was reduced to a whisper.
The medical staff at McMaster said that she was suffering from some of the worst side effects from chemo they had ever seen and that she was their mystery child. I later learned through my own research that chemotherapy can also destroy your body’s ability to produce platelets and hemoglobin. As well as your immune system. And permanently damage your organs including your kidneys and your heart causing cardiomyopathy. And that chemotherapy can cause death. Sadly, Makayla suffered from each of these permanent side effects.
As her condition worsened Makayla began to question us about whether or not the chemo was worth it. Whether it was working and whether she should continue. She asked, “Mom are you sure I’m getting better are you sure we’re doing the right thing? I feel like I’m getting worse.”
We reassured her over the course of several weeks that chemotherapy was killing cancer cells and so the other effects were worth it and would pass. And she continued her chemotherapy.
The chemotherapy made Makayla so weak and so ill that she put her foot down. She kept pushing more and more and saying things like “The chemo is going to kill me. I feel like I am going to die and I can’t take it anymore.”
Finally she asked me, “Mom, if you have the power to get me out of here then you need to get me out of here.” Meaning the hospital and treatment. She said she wanted to try traditional medicine instead.
Makayla was raised knowing about and using traditional medicines. She was deeply aware of her culture and heritage. Our medicines are an important part of who we are as Annishnabe people. They are sacred and that knowledge is kept within the community. They are something that cannot be delivered by the Hippocrates Institute.
Makayla’s choice to use these medicines did not come out of nowhere. It came out of knowledge of our people and our ways, and from her heart. Makayla very well understood the harsh reality of the doctors reports should she stop chemo.
She also knew that the chemo would not guarantee her recovery and the side effects themselves could kill her. Her words to us were, “I don’t care if I’m going to die. I don’t want to die weak and sick in a hospital.” And we listened.
We made an agonizing decision in April after 11 weeks of chemo to support her choice.
We met with one of the head oncologists at McMaster. He did not agree with Makayla’s choice or our support for that decision. In front of Makayla we were told that she and her two brothers would be apprehended by CAS. We were told that Makayla was not legally allowed to make her own medical decisions until she was 16 years old. This is not true.
The doctor went on to tell us that anyone who claims they can be cured by traditional medicines should be thrown in jail. We were told that she should be forced to continue with chemo because, in the doctor’s words, “she had not suffered enough.”
McMaster reported to Brant Child and Family Services that Makayla was a child in need of protection. CAS investigated and closed their file shortly after.
We shared and still share Makayla’s belief that had she continued with chemotherapy she would have died in a hospital bed in May or June of 2014. So instead, we took her home and we began traditional medicines.
After Makayla stopped receiving chemotherapy her health gradually began to improve to the point where she was attending school, playing and living a normal life. She was receiving traditional medicines from a healer from Six Nations and medical care through Dr. Zacks and her oncologist Dr. Marjerrison from McMaster.
We also took her to the Hippocrates Institute in Florida in July. She didn’t receive traditional medicines there. The institute isn’t an indigenous institution. How would a resort in Florida run by non-indigenous people know about our traditional medicine?
It has been very upsetting to see and hear the press claim we went to Hippocrates to receive traditional medicines and have our private family vacation exploited in such a way.
At Hippocrates, Makayla and I received nutritional counselling and she rested in the sun and swam in the ocean. The point of going to Hippocrates was to let her rest and relax. To learn to eat well. This was meant to strengthen her immune system and to help to recover from chemotherapy.
But the effects of the chemotherapy continued. Her immune system remained very weak, too weak. She was weakened by cardiomyopathy.
Makayla was monitored and treated by her oncologists at McMaster. Makayla was very apprehensive about returning to McMaster for care, considering what we had been through. But we felt we were left with no other choice. Dr. Marjerrison gained a trust with Makayla and spoke with her over the phone. She was one of the few oncologists Makayla would ever see at McMaster upon returning.
Every time Makayla approached the hospital her body began shaking. She never got over the fear she experienced when she heard her parents threatened with jail and she and her brothers threatened with apprehension.
With her weakened immune system the doctors at McMaster told she would never overcome an infection but in fact she fought through many. During this time we cared for Makayla. She had constant access to medical care through Dr. Zacks and her oncologist at McMaster. The nursing staff and Dr. Montour from Six Nations attended on her at our home. Her traditional healer saw her often and adjusted the medicines Makayla took according to her blood work and physical examinations. She received excellent care.
Finally she had an adverse reaction to an antibiotic. Her blood pressure skyrocketed. Less than a week after she was taken off of the drug she had a stroke and the next day she passed. She passed at home, in my arms, in her own bed.
Ken and I and the rest of Makayla’s family know that people across the nation care deeply about Makayla and wanted the best for her. The discussion and debate about her and our choices are an important part about educating Canadians about who indigenous people are, what we believe in and how we live. Without that education the tragedies that our people have suffered will continue. But the discussion and the debate will do more harm than good if they are based on inaccurate information, stereotypes and misunderstanding. That is what we have seen so far.
My hope in speaking to you today is to honor Makayla, her life and her choices by trying to correct so much of the misinformation that has been reported to the public. So that no other indigenous child, family or community will have to endure this when they seek medical care for a grave illness.”