A few years ago, we had just returned from living in Brazil and Emily and I were sitting in the Utah Valley Regional Medical Center reviewing Tori’s first MRI.
The news we received was crushing and surreal. Tori had a form of a terminal leukodystrophy, but until we got the results from several other tests we wouldn’t know if it was treatable or not. We were told that 50 percent of most leukodystrophies had no cure and no effective treatment.
During the two weeks that we waited for definitive lab results, scenes from the movie "Lorenzo’s Oil" flashed through my mind as I scoured the Internet for information and charted a strategy to save my childrens' lives. We were determined we would not go down without a fight.
A few weeks later we received the bittersweet news that Tori had MLD, a semi-treatable form of leukodystrophy, however, Maddie and Ike were also stricken.
As a parent, it has been a long, difficult road slogging through the emotional ups and downs of watching three children go through bone marrow transplants, only to learn that it was too little too late for Tori. When she passed away six months ago, we thought the worst was behind us and that we could move forward with confidence that the path in front of us wasn’t filled with more surprises.
Apparently, we are never going to make it out of the woods.
Despite a successful bone marrow transplant and a 100 percent chimerism of her brother’s blood, over the last few months we have seen a general decline in Madelena’s cognitive and physical health. Her muscles have become tighter, her walking more labored, and the mini seizures she was experiencing last year have returned. We fear the worst and the prospect of watching another child slowly die is unbearable.
Unlike Tori, there is hope for Maddie. She is high functioning and we caught the disease early. Over the past year we have experimented with several essential oils to counteract suicidal tendencies, seizures, depression and the tightening of her muscles and tendons. The best solution was an unexpected oil extract that we reluctantly tried after months of research and deliberation.
Reluctantly, and with some risk, we feel it is time to share our experience, educate others and give hope for others who may be in similar situations.
We are grateful to be surrounded by so many good friends and family who have refused to feel helpless and have done amazing amounts of research into alternative therapies, most notably, essential oils. With DoTerra and Young Living in our backyards, we hear about the healing properties of essential oils in everyday conversation. Equally as vocal were those who advocated the use of cannabis oil. I had heard stories of others in California using marijuana to stimulate their appetite while undergoing chemotherapy.
Like most Utah Mormons, I discarded marijuana as a recreational gateway drug that should be kept as far away from us as possible.
However, that all changed last year when we were struggling to help Maddie recover from her bone marrow transplant. The chemotherapy had reduced her brain mass by 30 percent and exacerbated the MLD, causing her to have small seizures. Her walking was so unstable, she spent most of her time in a wheelchair. Her cognitive functioning was so poor we didn’t think she would be able to return to public school.
We tried several seizure control medicines and Keppra was the best at controlling her seizures, but the side effects of depression and suicidal thoughts were too much for her to manage and for our family to cope with.
Last summer, several close friends in Utah and California called and suggested we try cannabis extract, CBD oil in particular, to combat the seizures. We learned that like wintergreen and camphor, some essential oils can be toxic, but if used in moderation can have wonderful analgesic effects (we do love our DoTerra DeepBlue).
In the case of cannabis, the oil can be separated into THC (which is psychoactive) and CBD (which is not). At the same time we were doing research on cannabis, Governor Herbert signed a bill allowing patients with intractable epilepsy to use non-psychoactive CBD oils to combat seizures. We were excited and the timing couldn't have been more perfect. However, because Maddie didn’t have intractable epilepsy we weren’t eligible to legally use CBD oil to treat her seizures.
Sensing our desperation, a few friends from California offered to bring us some cannabis extract to help with Maddie’s condition. With their help Maddie began receiving small doses of hemp oil every night. After a few days, her seizures diminished and after a week they stopped. We decided to enroll her in school as her walking and cognitive functions improved. We only had enough oil to treat her for several weeks, but the results were outstanding, which was validated by her church leaders and teachers at school.
Shortly before Tori passed away we ran out of the cannabis oil and decided to monitor her condition without any more medication.
Over the last couple of months we have seen a decline in her cognitive and motor skills. Together with her teachers we have seen that she isn’t walking as well and spaces out more in school -- a precursor to seizures. After several more tests our worst fears were confirmed. Maddie wasn’t completely cured, and despite a successful bone marrow transplant, Maddie may be heading down a similar road as Tori.
Yet, this time is different. There is hope that Maddie can live longer and we can help offset the effects of this disease with CBD oil. We don’t have to call hospice care, stockpile morphine and wait for her to slowly fade away. We know that CBD oil will alleviate her seizures, relax her tendons and overcome depression. However, we run the risk of going to jail if we treat her with the same CBD oil, legally used to treat those with epilepsy.
Last week we made a few phone calls to Utah state legislators and sent several emails to Utah senators to start the process of amending Utah state laws to allow us to legally treat Maddie with cannabis oil.
Trying to change Utah’s medical cannabis laws and public perception about medical marijuana in Utah is a daunting challenge, but life throws us curve balls and we can take them lying down or standing up.
Maddie is my daughter; my spunky, sassy "Girl on Fire." The girl who used her Make A Wish to bring the community together and say thank you while creating 4,000-plus craft kits for the patients in Primary Children’s Hospital. She deserves to have access to medicine we know will help mitigate the effects of this horrible disease. And we know we aren’t the only ones out there in the same situation.
This is the message we will be sharing Thursday morning when we testify to the Senate Judiciary Committee in support of Senator Madsen’s bill to amend the current law.