Over the past year I have been keeping you all up to date with the success Jackson has been seeing with cannabis oil. We have also been treating my daughter with cannabis in the hopes we could see some positive results for her as well. I am pleased to say that we have. Lillyauhna suffers from a condition known as neurofibrometosis type 1. This is a genetic disorder that affects all nerves within the body. Many people with NF1 develop tumors on their nerve endings, or fibromas. Lillyauhna developed a brain stem glioma when she was 3 years old. This was a slow-growing glioma that was inoperable. This type of glioma was benign so the treatment recommendation was watch and wait. We began doing Mri scans every six months. She routinely had these scans for about 5 years. Then one day she began to have dizzy spells. she became lethargic and was falling down often. In April of 2015 Lillyuahna fell down a flight of stairs so we immediately rushed her to the hospital. The doctors ordered anothe Mri and found she had a new glioma developing on her optic nerve. This time the doctor said she was becoming symptomatic and it was time for chemotherapy. In may we met with the brain tumor team at our local oncology center and opted for a surgical port placement and 52 weeks of chemo.She began Chemo in May and immediately started to suffer from neusea, headaches,neuropathy,joint pain, loss of appetite, more dizziness, and general fatigue. We treated these symptoms with a slew of medications. dangerous opiates and neuropathic medicines. None of these gave complete relief. We would continue with this treatment until December of 2015. On December 30th of 2015 Lilly went in for her weekly chemo treatment five minutes into infusion she began coughing and struggling for air. She started to turn pale almost translucent and then blue. I watched as the life seemed to be draining right out of her. All the while yelling for help. The nurses rush in and start yelling she’s anaphylactic. They put oxygen on her and start iv Benadryl as well and stick with an epi pen. They explain that she had a rare allergic reaction to the Carboplantin she was receiving and that she would no longer be able to receive that treatment.
We spent New years in the hospital. When she was discharged we began looking at other treatment options. Her doctor suggested a new safe form of chemo for her and we elected to go that route. It wasn’t until my dad fell ill with cancer that we learned of the benefits of medical cannabis oil. In may Lilly started taking Copper mountains 1:1 5% low THC oil. Shortly there after we stopped taking all other medications. Immediately we started to see results. She was no longer sick and vomiting, her neuropathy had gone away, her abdominal migraines vanished, and she was able to return to school full-time. By July of 2016 we were able to remove the port and have since changed her ratio to a 3:1 option. Lilly’s neuropathy remains under control. Her migraines are rare. She no longer suffers from dizziness. She sleeps well and has now completed and entire year of school without missing one single day related to her illness. Her tumors have remained stable with no growth. I was illegally treating my child for her condition because the doctors had told us that even though she was an oncology patient she was not qualified under the current law. The medicine they gave my child nearly took her life but she was unable to have access to cannabis because she was not considered to be end stage disease. I couldn’t believe what I was hearing. Witnessing the tremendous success Lillyuahna had seen with cannabis I also shared her story with our state representatives and asked that they offer a better way for children like Lilly and Oncology patients in general. Why do we have to be dying to get access to a medicine that could very well save us. I am happy to say they heard what I had to say and adjusted the law accordingly to cover those suffering people. This week Lillyauhna qualified for a medical cannabis card under the new Ga law. We can now legally posses the medicine she is being treated with. This has been a very difficult journey to say the least. I want to make this point to anyone reading this. When I began this journey I never thought that our story would impact others the way it has. I felt so insignificant in this cause. Honestly the truth is no matter who you are or what your story is. You can and will have an impact on someone who is struggling with the same or similar issues. Do not be afraid to share. Don’t think for one minute that you have nothing to add to this because you are wrong. I ask you to join with me and many others in sharing your personal stories with your friends, your families, and especially your representatives. As my good friend Sharon Ravert says “If we are talking we are winning”. until next time friends.