The story of J.J. – her healing journey
Bring up the name J.J. to most Canadians and you’d likely see adults with furrowed brows and looks of deep solemnity falling across their faces. Google the name and guaranteed the results will be worse; journalists, columnists, oncologists, “experts” all sounding off on how this is a child in a ‘hopeless’ situation, failed by her family, her community and the system.
But J.J., her parents and her 11 siblings are no strangers to the people of Six Nations. Bring up the child’s name in the village and you’ll see a totally different reaction to the one mentioned above; smiling faces, well-wishers and members of the public offering prayers and support to the family.
Extend that even farther to the hundreds of First Nations communities across Canada and the United States and you will find indigenous people who have laid down tobacco, and offered prayers and financial support – all in the name of solidarity for her journey.
So what is the discrepancy here? Where are the accounts of her certain demise coming from and which narrative is the true story?
Over the course of the last year I’ve had the pleasure of spending time with J.J. and getting to see who she is, observing her parents and siblings as they journey through this trial together. Who I have come to see in J.J., is a bright child of great depth, with a strong spirit and a family full of love.
Every time I see J.J. she is laughing. Her face beams with a big smile, dimpled pink cheeks and a little twinkle in her eye. Not a twinkle of innocence – her journey has taken her through so much adversity already that her spirit has wisdom deeper than most 11 year old girls. But this twinkle comes from the joy in being home, surrounded by her siblings and protected by her parents. It’s a look of trust – of certainty that she is safe, loved, and cared for.
I was invited to her parents home for an interview over the weekend. When I got to the house J.J’s father was sweeping the floor and cleaning up a bit. I could see J.J. through the window playing outside with her brothers and sisters and taking the compost out to the edge of the bush.
“We’re only going to be talking to you,” her mother told me. This is something I take as a great responsibility.
Journalists from media organizations near and far came to J.J.’s family in the beginning vowing to honour her story and tell it without influence. However that would not turn out be their experience.
Media heavily spun details of the girl’s ordeal to tell a certain story in a certain way – objectifying their nutritional choices as quackery, thus painting her parents as foolish and under-aware “aboriginals” swept away by a charismatic charlatan – and under served by a flawed Child Welfare system that granted First Nations parents liberty to ignore their child’s illness in favour of utilizing witch doctors.
This is not the truth. This was not the situation I observed from Six Nations. As an indigenous journalist I was appalled and shocked at the amount of spin and inaccuracy applied to the narrative as it appeared across national media.
“Would you ever consider suing the press?”, I asked J.J.’s mother.
“Can you do that?”, she responded. “I don’t even know if you can do that or not. I haven’t even thought about that.”
More recently with the court case finally being closed and clarification from Justice Gethin Edwards that her family has the right to pursue indigenous treatment for their daughter the way they see fit – their minds are now on other things.
J.J. came running in the house with her older sister. They were joking around and started play wrestling on the couch like sisters do. “Be careful of her port now. I told you J.J. no rough housing,” she called out to her kids. She turned to me and said, “I get nervous even when she is jumping on the trampoline of that port moving around too much.”
J.J. was doing well on her indigenous treatments and nutritional therapies. Her mother said, “We were able to heal her body back from chemotherapy and get her strong again. Then from there we were able to take down the leukaemia cells to give us the test results of “no visible signs of cancer” from her blood work.”
However bone marrow biopsy results showed a residual level of leukaemia cells still latent in her marrow. Doctors asserted that this development had to have been from the limited chemotherapy that she received however her mother says it was from the indigenous medicine and that she has the blood work results to show otherwise.
For eight months, from August 2014 until March 2015 J.J. would stick to a nutritional plan that included no meat, no dairy, no sugar and lots of fresh juices and vegetables. She was receiving regular care from doctors at another Ontario children’s hospital, who worked with the family closely to ensure she was progressing well.
Then in March her mother noticed some swelling in her neck. “It shocked me because it came on so fast,” her mother said. “Her lymph nodes were so swollen that her windpipe was being crushed. When we took her in they did a biopsy on one of her lymph nodes said they found leukaemia cells in it.”
Devastating news for any parent with a child who has struggled from the crisis of a leukaemia diagnosis to “no visible signs of cancer”.
“I felt so defeated. So defeated,” said her mother. “I felt like we had come so far and we had done so much good for not only J.J. but for all our people who are going to use our medicines.”
Her parents described the agonizing decision they were faced with – start J.J. on a new 2.5 year protocol of chemotherapy right away, or keep on the path using just indigenous medicine. They decided they were going to do both and increase the intensity of her indigenous medicinal treatments at the same time.
“I felt like I was backed into a corner,” said her mother. “But I knew that I didn’t want to lose my little girl.” So they began the treatments and J.J.’s body began to respond right away.
For her mother the immediate concerns were fear that J.J. would react to this round of chemotherapy drugs the same way she did previously. Testimony given by CAS workers in court last fall described a child doubled over in extreme pain, enduring the kind of nightmarish side effects that prompted her removal from chemotherapy treatments in the first place.
Her mother said, “When I watched the first chemotherapy drugs enter into her system I braced myself and thought, ‘Okay how is this going to affect her’? To everyone’s relief, J.J. has responded to this initial phase of chemotherapy much better than before.
“We’ve had doctors and nurses approach us shocked with how well she is responding,” her mother shared. “Normally at this phase they said a lot of children need a blood transfusion but J.J’s white blood cell count is really good.” Her parents believe that this was due to the eight months they worked on strengthening J.J’s body, mind and spirit to the point where she is now able to tolerate the forms of chemotherapy being administered.
Her father said that he received a confirmation his daughter was going to be okay. He said, “When my wife first came home and told me that this was gonna happen, I walked outside and it was one of the first nice days we had this year. I looked up and a whole big flock of birds flew up out of the field right in front of me. It was just beautiful. It was right then that I knew that she was going to be okay. That she was going to be alright.”
Just then the front door swung open and J.J’s siblings all came running into the dining room where her parents and I were chatting. “Pizza is here mom! The Pizza is here!,” their youngest children shouted out. Suddenly the room was filled with seven bubbly kids all chatting and laughing. Their dad handed out paper towels and the kids all sat down and waited patiently for a slice of cheese pizza and some chicken wings.
“Mom I need some dunk,” the youngest daughter said. ‘Dunk’ I discovered is the name of blue cheese chicken wing dipping sauce in this household. J.J. sat beside her youngest sister happily eating a slice of cheese pizza and a garden salad. She is still pursuing juicing and incorporating vegetables as a part of her nutritional plan but is now allowed to have “treats” her mom says.
“Are you glad to be able to eat pizza now?,” I asked her.
“Yeah,” she smiled. And then she turned to watch a funny video on her older sisters iPod. Just like any normal 11 year old girl. As they were giggling away I sat in the dining room observing a very happy and normal pre-teen girl, six weeks into chemotherapy, surrounded with love and confidence in herself, her family and her community. Definitely a huge turnaround from where she was eight months ago.
After the court case was finalized last week, J.J. and her entire family finally have some breathing room. They are no longer living with fear hanging over their heads that she could be apprehended at any moment, stolen from her family and forced back into the hospital.
The eight months that she spent pursuing traditional treatment to restore her body, mind and spirit were much more than just herb teas and probiotics – this is the inaccurate picture media have reported, devaluing the healing journey she was on.
Ceremonies were performed all across the continent to help build up her spirits. Feasts, pipe ceremonies, lacrosse games, dances, prayers and offerings were made all across North America by medicine people from the North, South, East and West all sending healing toward this child and her family, who were grossly affected by the assumptions many made about her family’s decision to stop chemotherapy.
It’s these ceremonies, the support of the community and the nutritional work they did with J.J. that has all been vital to bringing the child back to place of holistic well-being to where she is able to tolerate the chemotherapy much better now. Her mother said, “I feel like we did the work to repair her body, but also her spirit and her mind. We still get messages and support from people every day saying how they are doing ceremonies for her and giving us words of encouragement.”
Her father said that J.J.’s siblings also have played a vital role in her healing. Her youngest sister has been by her side through all of the treatments, holding J.J’s hand and helping care for her whenever she can. “That little girl has made all the difference in J.J’s getting through this,” said her father.
Still the family is aware of the gravity of J.J’s illness and the new journey she is on. A few nights ago her younger brother had a dream about his sister. He began to tell me, “I saw J.J and she was…” He stopped. He got silent for a moment and everyone at the table got quiet and listened. He hung his head in his hands and began to weep. Everyone at the table reached out toward him to offer a hug.
“Come here my boy,” his father said and he snuck in between his parents at the table. They comforted him and his father rubbed his head as they do in Haudenosaune tradition. A teaching that I’ve seen in my own family. It’s a physical expression of rubbing away the bad thoughts from the mind of the child.
His mother kissed him on the top of his head and said, “It’s okay son. It was only a dream. It’s okay to cry though because even though it was just a dream it still feels real don’t it?” As he nodded he hung his head and cried some more deep sobs.
J.J. listened quietly and I saw their father take a strong step of leadership forward to bring back a good mind of hope to his family. “My other daughter had another dream. That is the one I choose to follow. She dreamed that Jada never got sick and that things were all like they were before the C word came into our lives,” he reassured his family. “That is the way we are going.”