Family of Makayla Sault speak out about their experiences

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.”

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19 Comments

  1. Thanks for sharing. What your family has experienced is part of a recent ugly trend I have noticed to vilify and manipulate public opinion to make it perfectly acceptable to collectively bully anyone who chooses to opt for other than costly patentable harmful treatments from the “conventional” medical system. They’ll use anything to make them look bad, ignorant, negligent or plain stupid, all the while turning a perfectly blind eye on the fact the medical system, by its own admission, has become one of the leading cause of death. It follows logically that people look elsewhere for health care since they no longer care primarily about health, mostly selling more pills, more treatments, and performing more medical acts, all billable regardless of end results… And what are those results? Generations of sicker children plagued with growing cancer, neurological and chronic autoimmune disorders…

    1. Nonayo I completely agree with you and I have experienced this myself. The AMA (American Medical Association) even admits it is the fourth leading cause of death. There are also those, like myself, who experience severe adverse reactions to chemical drugs and have no choice but to look for alternatives which often work much better without the side effects. My deepest sympathies to Makayla’s family for not only the loss of your daughter but what you went through because of the “establishment” and the ignorance and judgments of others. xo

  2. Thank you for sharing this. I appreciate the depth and truth. The account is so genuine. Amid all the trolls shredding people to pieces, this is what truth looks like. Many people know it – especially the damaging threats that come out of medical arrogance.

  3. The Specialists don’t always have all the answers, the parents don’t always have all the answers. Complimentary and alternate therapies are considered with all illnesses, we have considered some for our daughter with cerebral palsy. Parents do the best they can, it is wrong of others to judge. It is natural for a parent to turn to medical advice from the doctors they trust that work within their belief system and faith. Children die of childhood cancer all the time. The message is their is no right or wrong decisions, people due the best they can no matter what their race, religion or ethnic background. I think they are very brave parents. Ethically, I don’t think their was a role for courts and CAS in this case. It just added to their trauma, created anxiety for their sick child and made them feel judged. We can do better in society and we can do better in the medical field of being less judgemental. May the family feel peace and have time to grieve, may people continue to work together to fight child hood cancer. Bless Makayla and her family. Brave family and child. I am so sorry for the loss of your young daughter.

  4. Thank you so much for writing this for us to read. It could not have been easy and must have been very emotional for you to go through everything again. Makayla sounds like an extraordinary soul. Of all of the things I have heard surrounding Makayla’s treatment I am so glad to hear the truth from you. You are incredible parents to know your child so well and work with her in her treatment with so much love and respect for her personal knowledge and insight. You were all a blessing to each other. Blessings to you and your family as you carry on in Makayla’s honour. May the faith that she had in her knowledge and traditions be with you always.

  5. Her parents did what I would have done myself, honor my child’s right to live and die on his or her terms. Until such time as we can trade places with the dying and suffer through what they do in order to ‘maybe’ be cured, none of us know or have the right to heap our judgment on the situation, especially based on third party opinion. [Makayla walks with the ancestors]

  6. Despite the belief, even conventional medicine cannot promise you a cure. It is all about statistics. You are considered in remission by medical science if you are still alive after five years. However, they believe the cancer can come back at any time. I have been warned about this since I had cancer myself. This is a statistic they don’t tell you about early enough. So the believe by conventional medicine is that if you had cancer once, you could never be considered cured.
    Doctors at the hospitals don’t know why some patients survive and others die under the same treatments. It is because they ignore many aspects of healing and focus entirely on the physical body’s chemistry. They focus on fighting the disease with poisons and radiation instead of helping the whole individual physically, emotionally, mentally and spiritually to recreate health and balance naturally.
    I’m not against conventional medicine since it has many benefits but it is only one option and not the cure for all.

    “Proven science” totally ignores the spiritual aspect of life and healing that living or dying is a choice of the soul just like everything else. There is a fully capable and magnificent soul in a child’s body who can make choices. Makayla had a destiny to fulfill to teach us all something.
    Unfortunately, not all see the higher purpose in our lives and fail to realize that all of us are spiritual teachers to each other in this illusion we call physical life whether you believe it or not. We should respect each other for our choices whatever that may be, even if it is death and not to control others.

    We cannot know completely what a person needs for living and/or healing or how he or she experiences life because we cannot be in his or her body and soul. We are experiencing life from a different perspective, our own. What we think individually or collectively is good for us may not be good for someone else who chooses differently. Our body is our property, a sacred gift and the vehicle for our soul for a little while. Our doctors, healers and other people are our advisers, our counselors only whom we may consider to make choices for ourselves but the choice is ours.

    So respect that.

  7. The parents traded a 72% chance of survival for a 0% chance.
    They state she was given a 1 in 3 chance of dying from Chemo. That means a 2 in 3 chance of survival.

    They opted for traditional medicine that has no proven record for curing cancer. It would be like trying to treat cancer with old traditional western medicine like leeches, and blood letting. There is no proof this works for Cancer either.
    If they wanted to give her the best chance at survival they could have continued with Chemo and also used thier traditional ways in conjuction. Would that not have been the best solution for the best possible outcome?
    To honour her passing would be to stand up against removing children from necessary life saving medical care! Not to let treaty rights or religion interfer with the proven science. Why should some Canadians have different rights then others by the nature of their birth?

    1. These are the numbers from the trials all made on the “healthiest” white adult male hand picked patients. She tried it and had the worst side effects they had ever seen. Your faith in chemo is admirable but it is only that, faith, to understand the science you need to read all the details, not just the headlines that fits your beliefs… Are you aware the “proven science” says the medical system has become one of the leading cause of death, as is admitted by the Institute of Medicine in its “To Err Is Human” 2000 report?

    2. Did you not read the article? Aboriginal children do not fare well on chemotherapy and that 72% percentage dropped further. Makayla had severe horrific reactions to chemo. She was weakened by cardiomyopathy due to the chemo. In other words, chemo damaged her heart which most likely led to the stroke. Chemo actually killed this child. She was recovering and gaining strength using traditional medicine but the damage done by the chemo had already sealed her fate. If you don’t understand the toll chemo has on organs and the immune system, you better do some serious research. I would take traditional medicine over chemo any day. Traditional medicine has no proven record for curing cancer because it has never been tested so there are no studies to show how effective it is but traditional healers know it can be very effective in treating not only cancer but all diseases.

  8. Thank you to Makayla and her family for sharing their story. As a mom, my heart aches for the family and your loss.

  9. I second that, Giselle Ruemke. I’ve learned never to believe mainstream media in particular when it is “reporting” on anything touching indigenous people, but this statement moved me to tears for other reasons. Thank you, Makayla’s family. Wishing you healing and peace.

  10. It’s incredibly gracious and generous of Makayla’s family to share their story with us. They certainly didn’t owe us anything. Most parents in their position would have great difficulty forcing their child to endure such torment… I know I would. This family deserves our respect and support, not our judgement.

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