Story of Hope – Meet Alexa
On November 9th, 2016, our life changed forever!
Alexa was a very typical girl. A passionate basketball ball player, rarely ever sick, and had recently fell in love with a goldendoodle that we had just brought home, named Stella.
Alexa had been sick over the previous weekend, but because she was rarely sick, we just thought it was another day. We took her to her pediatrician since we were thinking she had croup. During her examination, her pediatrician asked, “is her belly always this bloated”. Alexa was not a slim child, but far from being considered obese. Her pediatrician recommended an abdominal ultrasound.
On the morning of November 9th, 2016, she went for her ultrasound. Immediately, as soon as the probe hit her abdomen, the radiology technician said, “I need to get our Radiologist”. As parents, we are both Nurses with a significant number of years of clinical experience, and we realized this was not a good sign. It was at that moment when our lives changed, our hearts stopped, and we realized our life was not going to be the same, ever again.
She was immediately sent to a local children’s hospital, and after various blood work and diagnostic testing, we were informed that our 9-year-old daughter had stage 4 ovarian cancer. Less than 2-3% of all pediatric cancers in the world.
On November 10th, she was to undergo an extensive debulking surgery. Her left ovary, her omentum, and various other tumors were removed and sent for a definitive pathology diagnosis. Alexa, being the strong girl that she is, recovered well, and within a few days we received the diagnosis that she had mixed germ cell cancer. We were assured that this was a treatable cancer, but after multiple rounds of chemo, and on the verge of more aggressive treatment, we reached out to one of the top children’s oncology programs in the United States (Cincinnati Children’s Hospital).
Alexa underwent tandem bone marrow transplants with high dose chemotherapy, multiple different chemotherapy agents, yet her cancer was still not at bay. She relapsed 3 times.
By the third time she had relapsed, we were clearly desperate, and as any parent would demand, we wanted the most aggressive treatment possible. In November of 2017, we decided to put our daughter through the most extensive surgery and treatment protocol that was ever imagined for a child. She underwent another extensive debulking surgery in which there was newer cancerous tumor growth, but also intra-abdominal chemotherapy during surgery. During this extensive surgery Alexa also had a portion of her liver removed, spleen and appendix removed due to new tumor presentation. A questionable treatment in adults, and not well studied in pediatric patients, but we were desperate. It was our daughter.
Fast forward a few weeks and the follow up treatment for Alexa was to get more chemo and 17 rounds of total abdominal radiation. Once again, Alexa took this on like it was another day. She never faltered, and she remained amazingly strong. She was our strength and guiding light because as parents, we were absolutely crumbling everyday having to put her through such extensive treatment.
Alexa continued to recover, and she finally got to a point as to where we could consider alternative therapy.
Prior to Alexa’s extensive surgery in November of 2017, a family member (Bridget Wagner) who knew of Believe Big sent us information about this organization. Since we were both nurses, we were scouring the medical and scientific literature to find a cure for our daughter. We extensively reviewed the literature surrounding mistletoe therapy, and at that point we promised each other that if we ever got Alexa to a point that she could tolerate the travel to Colorado and the naturopathic treatment, we would do anything we had to do to get her treated with mistletoe.
With the extensive help of Believe Big, we were very fortunate to get Alexa treated with mistletoe therapy in December 2018 in Boulder, Colorado with Dr. Kirsten West at NatureMed and Jess Kelley at Remission Nutrition. We strongly believe, and absolutely advocate for this therapy whether you are in treatment or post conventional treatment. The science behind mistletoe therapy, in conjunction with conventional and naturopathic treatment, is absolutely what ultimately saved our daughter’s life. None of this would have ever been possible if we had never been exposed to the great work that the Believe Big Foundation is doing every single day. This organization is not only about providing funds for alternative treatment, they are also investing in the science to change the outcomes of patients, young or old.
We will forever be grateful to the Believe Big foundation for not only the support they gave our family financially, but also the extensive work they are investing in to prove in the United States that this therapy is effective. To date, Alexa’s scans are completely clean, her tumor markers are well below normal, and her conventional Oncologist is amazed with every visit.
Sincerely,
The Hughes Family
Ben, JoAnn, Wesley, Alexa, and Jeffrey Hughes
