Louisa’s Story

Harvey was diagnosed with very low risk B-cell acute lymphoblastic leukemia at 3 years old. In the weeks leading up to his diagnosis his symptoms included: mouth pain, extreme fatigue, loss of color, debilitating leg pain, bloody noses, fluctuating fever, stomach pain, and irritability. During this time, we took him to the ER and then had two follow up visits with his pediatrician, and the conclusion from each visit was that he probably had a virus and growing pains. We requested further testing and ended up back in the ER for blood work. His labs showed that he was anemic and most likely had leukemia. An ambulance took us from our local ER in Illinois to the Children’s hospital in Madison where they confirmed his diagnosis with a bone marrow biopsy.

We were given no other option but to start chemotherapy immediately. After one week of aggressive chemo, Harvey’s peripheral blood showed he was in remission, and his bone marrow biopsy on day 28, confirmed it: complete remission. We celebrated! Our nurse practitioner was quick to remind us that he still had cancer and cancer cells were everywhere in his body, they just couldn’t find them. Even though our care team wanted to constantly remind us that “he had cancer,” we told Harvey that the leukemia was gone—that was the truth. We were on a journey of healing, not one of being defined by a disease.

There was a big elephant in the room, and we needed an answer for what caused a 3 year old to get cancer. The response from our oncologist was, “We don’t know the cause”. My husband and I were bewildered. In all the years of cancer research we still don’t know what causes cancer? Was it really just bad luck that Harvey was diagnosed with leukemia? NO! We began to uncover the truth that no one at the hospital would tell us: There ARE significant cancer-causing factors, and 90-95% of cancer is caused by poor diet and exposure to toxins.

As soon as we were armed with this truth, we took immediate action and responsibility for our family’s diet and lifestyle. We took a hard look at how we were living and where we were living. The reality was that we maintained busy schedules leading up to Harvey’s diagnosis, with little to no time for making healthy meals. More than half our diet consisted of animal-products and “dead food”, with very little living food. We fed our family what was easy and convenient. And it took cancer at our door to pull a 180 overnight: we eliminated the microwave and our toxic non-stick cookware and implemented a nutrient-dense plant-based diet with no sugar, no refined or packaged foods, and no fast-food. And we gave up all the “extras” in our schedule that were keeping us too busy to eat healthfully.

Environmental toxins may have been the biggest protagonist of all. We lived down the road from the city dump, Pagel Pit, that collects Chicago’s trash. The EPA lists Pagel Pit as a Superfund site—a contaminated site where hazardous waste is being dumped or improperly managed. Our zip code contained 4 of these Superfund sites. We also lived above a chemical garage and we found exposed rat poisoning in our storage areas. We lived on farm land where watching tractors was entertainment, and we’d stand along the fields as they sprayed pesticides and herbicides. Naively, it didn’t register to us that we were living among carcinogenic chemicals—cancer-causing toxins—both in our home and outside. Additionally, we had our house tested for mold which showed elevated levels; and we had the well water tested which showed harmful contaminants.

We took samples of Harvey’s hair to be tested for heavy metals and toxic elements and the results were alarming to say the least. We tested our daughters hair, too, and her results came back just as concerning. Then I had my hair tested with minimal findings. Why were the levels in our children so elevated? And where does a child pick up metalloids like antimony? Come to find out, antimony compounds are prominent additives in fire retardants which are used in kids clothing and bedding, car seats and strollers, and so many other products in our home. All of these environmental triggers were compromising our family’s health and we made cleaning up our environment a priority, including moving out of the country farmhouse.

During the first couple months of chemo, he couldn’t walk or play due to the peripheral neuropathy, pain, extreme bloating, and cognitive impairments. Screaming became very normal for Harvey, and we forgot that he used to be a boy of jubilant laughter. The only thing the hospital could offer were more drugs to cover up the side effects. But each of these drugs come with their own list of side effects, further toxifying the body. The answer was clear: it was up to US to advocate for our son and get him help and proper care.

We were those parents: the ones that questioned everything, the ones that asked for all the scientific explanations, and then stayed up to early-morning hours reading myriads of medical journal articles and books on cancer and healing. We asked for a copy of the entire chemo protocol—a  220 page document—as well as the full drug inserts for all the chemos and drugs he was given. We also withheld home medications, like the antibiotic he was required to take for 5 years straight—talk about sabotaging your gut and putting your body’s defenses further in the red. We used a much safer, completely natural alternative, called Biocidin. Harvey was also prescribed 3 meds for constipation and we never once gave the laxative drugs—half a cup of Smooth Move tea did the trick.

Additionally, we requested that Harvey’s vitamin D & B12 levels be tested every 3 months, and we have watched his levels rise from deficient to normal ranges since supplementing with these vitamins. Furthermore, some children have genes that do not allow them to break up certain chemo drugs, which results in excessive toxicity, and we requested testing for TPMT and MTHFR. Parents shouldn’t have to ask for these tests; they should be required before ever giving chemotherapy, so drug doses can be tailored for the individual to reduce toxicity and increase effectiveness.

Harvey’s TPMT test results showed he could metabolize the chemo drugs thioguanine and mercaptopurine. However, his MTHFR test came back homozygous for the C677T mutation, meaning he has two bad copies of the gene and the greatest chance for sensitivity to anti-folate drugs like methotrexate. Finding this out was a big deal, because Harvey was given this chemo intravenously and intrathecally in the spine throughout the entire course of treatment. We suspect this is why he responded with seriously abnormal side effects. We even consulted with a pediatric oncologist in Arizona, Dr. Graham, who believes that MTHFR kids should have their own chemo protocol because of their increased sensitivity to the drug.

As we cleaned up our diet and environment, and advocated for Harvey’s wellbeing, we were also putting together a team of doctors and alternative-care practitioners, outside of Children’s hospital, to help us improve Harvey’s quality of life. We first met with Dr. Felde in Chicago, whose young daughter was sent home on hospice for her incurable liver cancer. She ended up achieving a radical remission and was cancer-free 5 months after she was sent home to die. We learned about the natural modalities that Dr. Felde used to help eradicate her incurable malignancy, things like chiropractic, nutrition, IV nutrients, infrared sauna, PEMF therapy, and the like. He really helped set the stage for our holistic approach to Harvey’s care, and left us amazed at his daughter’s ability to heal from cancer, even after conventional methods failed her.

Harvey’s care team continued to expand with the following practitioners: Dr. Hesselink, MD at the Ayre Clinic in Chicago, Dr. Paisley, ND at the Bambu clinic in Portland, Dagmara Beine at Zuza’s Way in Wisconsin, and Dr. Morse, ND in Port Charlotte, Florida. We also received encouraging support from The Stern Method family, who had survived childhood cancer without the full protocol of chemo, and made huge changes in their life, just as we were doing. A fundraiser was started to help us cover the costs of these out-of-pocket expenses, and we received an overwhelming response by family, friends and strangers who donated to Harvey’s cause.

Harvey started weekly IV vitamin C infusions in Chicago. We also bought a couple of high ticket items, a Pulsed Electromagnetic Field Therapy mat and an infrared sauna — both have paid back with huge benefits. The components of our anti-cancer life started to look like this:

Here’s the reality of conventional treatment: when you’re constantly being pumped with poison, there’s no superfood, supplement, or therapy that can eliminate the toxic effects. Harvey’s quality of life was a rollercoaster, and after 5 months of the intense chemo, he reached a point of dose-limiting side effects and toxicity that had us fearing for his life. We weren’t going to lose our cancer-free son to being poisoned to death, so we had a conference call with our oncologist, nurse practitioner and social worker, stating we were going to stop chemo.

Our oncologists reported us to Child Protective Services for medical neglect. We spent the next 24 hours, before CPS showed up, contacting as many lawyers that we could—they all told us CPS would take our child and they were not able to get involved. We finally secured the services of a lawyer who agreed to help us IF we did what the oncologists said and resumed treatment, which we did. But our oncologist in Madison was not willing to take Harvey back for treatment, so we ended up at UIC in Chicago. At this point, Harvey was severely neutropenic, and with his life hanging by a shoestring, we made a list of our top 6 geographic essentials for his healing and survival:

Our hometown in Illinois met the last two essentials, but there was another state that could meet all six: Colorado. There are two Children’s hospitals in the Denver area, we could continue weekly IVC at Ballen Medical, we could get Harvey a medical card and use cannabis, we would have 300 days of sunshine, and there’s an abundance of options for organic produce. Harvey was also born in Denver, so we had already established roots there with a close circle of friends, and my sister and her family live there, too.

We transferred Harvey’s care to Children’s in Highlands Ranch, CO. Meanwhile, our CPS investigation was still open in Illinois, and the case worker tried to transfer it to Colorado, but they wouldn’t accept the case. This was our first hope that maybe Colorado was more understanding of educated, loving parents who are seeking out the best care for their children. A police officer had to come out to verify that Harvey was alive and well in order for Illinois CPS to close their case, and the case closed with no findings of abuse or neglect.

We consulted with numerous cannabis doctors, including Dr. Cohen and Dr. Gottlieb in Boulder, Dr. Shackelford in Denver, and Dr. William Courtney in California. Harvey got a medical card and we started using a 1:1 CBD:THC cannabis extract that benefited his quality of life, reduced the pain and nausea from treatment, and improved his sleep. He takes 1ml of the oil orally it at night, so any psychoactive effects are while he’s sleeping. We would also give it during the day after chemo when side effects were too much to tolerate.

Even though cannabis was alleviating some of the chemo-induced side effects, Harvey’s emotional well-being was still deeply suffering from the frequent methotrexate chemo. His obsessive, compulsive behaviours and outbursts controlled our lives, so much so that many days we didn’t leave the house or get out to play because his screaming and crying could last for up to hours at a time. In tears, we talked to our oncologist about getting an MRI to see how and where his brain was being affected. We were told that you could have a scan full of encephalopathy (brain damage), but it doesn’t mean anything, and he didn’t want us to be alarmed by seeing brain damage. We were desperate for answers—our son had become a shell of a being that was broken inside—and our oncologist even admitted that Harvey’s side effects were some of the worst he had ever seen in all of his years of oncology. Even so, we still had to continue with the chemo and not alter any doses.

We were determined to end long-term chemo, and we finally found a Colorado lawyer who was willing to help us—Jessica Peck. Then we found a medical doctor willing to oversee Harvey’s post-chemo care—Dr. Rountree. We called the hospital and told them we were transferring care, to which we received a list of threats about Harvey being taken from us and chemo being forced. Our oncologist reported us to CPS for medical neglect which brought two social works to our house immediately. To our surprise, the ladies were not threatening, rather receptive to our story. Our meeting ended with them stating that this wasn’t a life-threatening situation because Harvey doesn’t have active cancer, and parents should have the right to transfer care to another doctor. We agreed that if it ever comes down to Harvey needing chemo, he will receive the most appropriate medical care, but presently daily chemo for many years is not the safest way to care for him. After our meeting, the social workers called our oncologist to confirm Harvey was in complete remission, and they connected with our new doctor, Dr. Roundtree, to confirm we had transferred care and that he would be the monitoring doctor.

A week later our case worker called and told us we could continue care with Dr. Rountree and we were not bound to long-term chemo at Children’s. The following week she contacted us again to say they never opened up a medical neglect case, but they were “closing” the case for good. She also wanted to warn me that our oncologist was very mad and to beware of running into him in the future. She apologized for his untruthful threats and said that doctors like to think they know how their system works, but they don’t.

And this is our happy ending to long-term chemo, and the beginning of the rest of our lives with our cancer-free son. God equipped us to face our giants; He made a way when there was no way; He parted the sea so we could walk right through it. Fear was telling us this couldn’t be done, but God was whispering the whole time that His plans for Harvey would prevail.