In response to my post, Cancer’s Shocking Price Tag a mother left a comment briefly outlining her family’s horrendous experience with their 9 year old’s brain cancer. After researching their options, they decided to treat their child’s cancer with alternative therapies. Their child was cancer free for two months. The oncologists turned them in to Child Protection Services and they were forced to submit to 13 months of chemotherapy even though she was cancer free.
I spoke with Karen and she told me some of the details of their experience. If you don’t think it could happen to you, think again. This is yet another assault on parental rights in the name of the holy grail of medicine.
Karen, thanks for speaking with me today. Your experience has to be a parent’s worst nightmare. My heart goes out to you and others with similar challenges. Can you talk about getting the diagnosis and what followed?
Before the diagnosis, Sarah had been throwing up for 6 – 7 weeks. We went to the pediatrician first and he diagnosed a sinus infection and she was given antibiotics. However, she continued to throw up.
We were already involved with alternative medicine before this happened and had been seeing a homeopath. When we brought her to the homeopath she said her brain shows the most stress.
We went back to the pediatrician and told him about what the homeopathic said about her brain. The MD said he didn’t believe that stuff. He answer was, “I am a man of science”. The nurse at school suggested we get a CT scan and he finally agreed. We got the CT scan and we were told there was a mass in my daughter’s brain. She was eight years old.
That was shocking. It was the “worst day of my life.” I was trying not to cry in front of her. Sarah knew I was crying and told me to take really deep breathes, that it helps to stop crying.
As I was wheeling her out, a lab tech came running over to me — they wanted to do an MRI immediately. I knew this had to be bad. They first thought it was a non-cancerous tumor and they wanted to do surgery right away. Two days later she was in surgery and it turned out to be a medulloblastoma, a cancerous tumor.
The surgeons said they were able to remove 95% of the tumor. Since it was at the brain stem they could not chance trying to get more of the tumor out. We were told the next course of action would be 13 months of chemotherapy and radiation . This was in December of 2011.
How did you decide to go with alternative treatments instead of conventional?
I started to research this and I knew some people who had treated themselves for both cancer and autoimmunity. These people helped me with the research.
From the beginning we wanted to use alternative treatments. We believed that alternative treatments could cure this tumor without the horrible permanent effects from conventional treatments.
Can you describe the treatments you chose?
After much research we ended up doing Gerson therapy with Budwig protein and Rife therapy.
The Budwig protein is made up of flax seed oil, flax seed and cottage cheese (organic cottage cheese) and berries that is blended to yogurt consistency. This was the first food she could get down after the surgery when she was so depleted and weak.
Recipe: 6 Tbsp cottage cheese , 3 Tbsl flax seed oil 2 tsp ground flax seed (use immediately) + 1/2 cup organic raspberries and 1/2 cup organic strawberries. This protocol was started by Johanna Budwidg in Germany. Some people have investigated this and come to the conclusion (via research) that it would be better to use undenatured whey protein instead of cottage cheese which has the casein in it. Some people are intolerant to casein protein. Read about the modified Budwig Protocol here.
Three weeks after surgery Sarah was moved to a therapy hospital and I started juicing. I was allowed to juice at the hospital and we started with carrots, apples and celery.
There was lots of pressure at the therapy hospital to go straight to another hospital to start radiation therapy. At this hospital the doctor was gingerly threatening us with child protection if we did not do the radiation, but they allowed us to go home.
We then saw Dr. Kevin Connors at his clinic The Upper Room.
A friend of mine went to see him for her autoimmune disease and she was so impressed she started treating for herself. Iwas able to get an appointment for Sarah on my late mother’s birthday. I thought that a good omen.
The treatments are geared to support the body to cure the disease just as any alternative treatment would.
We started using the Rife machine (Dr. Royal Rife) which was tested on terminally ill cancer patients and had a 100% cure rate. This is a light therapy — you sleep with the light — it looks like a small florescent with pink or purple bulbs. This therapy destroys only the cancer cells — not healthy cells.
Dr. Connors also guided us on using the Gerson therapy — juicing and coffee enemas at home. There were also supplements after chemo, such as green tea extract, etc.
How did you determine she was cancer free?
We did this intensive alternative therapy for one month after the surgery. Sarah given a spinal tap and an MRI and it was determined that there was no sign of cancer.
What was their rationale for starting the chemo even though she was cancer free?
They told us that the chemo was needed because there was a 100% chance that the tumor would regrow and she would die. But I disagreed and another oncologist that we consulted disagreed. I was planning on refusing and hiring attorney. At that moment the doc at Children’s Hospital told me she would approve proton therapy instead of radiation. This is radiation but is single entry and has half the side effects — which is less devastating then traditional radiation. We agreed to this rather than fight a losing battle.
We had to go to another city for 7 weeks of proton therapy. There was supposed to be financial support but it turned out we did not qualify for anything.
How did you end up in front of a judge?
We also had to do one round of chemo before we left Children’s Hospital and they used a drug called Vincristine. After the first dose Sarah had such difficulty swallowing she could hardly even drink. They cut the dose in half. But the doctor in Chicago threatened to turn her in to child support unless she agreed to the full dose again. This drug caused Sarah such pain, it put her in a wheel chair, but their local doctor refused to stop that treatment.
Her child’s pain and disability was intense. But the parents were not allowed to make the decision to stop that particular treatment. They had no say in the matter.
Karen had many conversations with oncologists via conference calls but most would not accept the fact of this parent advocating against conventional medicine.
In December 2012 we went to court to get the judge to allow us to stop chemo — particularly the Vincristine. My husband is a native American and we got the tribe involved. They put together a team of doctors to determine Sarah’s care instead of just the one at Children’s Hospital and it was court ordered that they would work as a team to decide Sarah’s care. However, the hospital didn’t follow the court ordered document for 4 months! The tribe also got the county to pay for some portion of the expensive alternative treatments.
We finally got the doctor from Children’s Hospital to agree to stop the chemo because the side effects were so bad. This doctor called the primary doctor informing them they were stopping chemo — but behind the scenes — this decision was overturned. The hospital accused us of not showing up for treatment — even though we were told the chemo was stopped. The judge, who believed the lies, threatened to take my child away and we had to go immediately to get a chemo treatment. I begged him for 3 days just to prepare Sarah’s body with supplements, but he insisted we go immediately.
How is Sarah doing today?
She finished the chemo in March — she had hearing loss for months afterwards but today she has had totally restored hearing. We are so grateful for that! She also has a thyroid condition, Hashimotos that is being treated with natural thyroid. This is probably from the radiation and the chemo.
What advice could you give to others with similar issues?
Do your research and get to know someone who has gone through it to get advice.
Can you believe this story? We are supposed to be living in a free country, but parents are not allowed to make major decisions about the treatments their children should receive. Who but a parent knows what is best for their child? This is a terrifying reality that some of us have to face.
What would you do if you found yourself in a similar situation? Leave a comment and share your thoughts!