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Our Story - DIPG Brain Tumor

My beautiful one and only Granddaughter was born on the first day of spring 2010 and I was thrilled, scared, overjoyed, nervous, and oh so very much in love from the first time I set eyes on her. My daughter just 19 years old, back at home with me after having left her partner. It is now 2015 and my wee granddaughter is 5 years old and has brain cancer.

This year has been a total train wreck. I am still out of work after being made redundant in April and in August our family was dealt a devastating blow when we were told my granddaughter had an in-operable brain tumor on her brain stem (DIPG) and there was no hope to save her.

Most families will not take a cancer diagnoses lying down and we decided another opinion was needed. We went to a top Naturopath who is well known for his treatment in hard to treat Cancer. He just shook his head. We were able to give her immune system boosting supplements, fruit and vege juices, that kind of thing but to get all that down a 5 year old? Just wasn't going to be a huge success.

I had been involved and reading on natural health subjects for years and another family member had too. I had read a huge amount on the health benefits of Cannabis and plenty of anecdotal reports of Cannabis curing and helping people with Cancer for palliative care. So I had to dig deeper to learn more.

In the meantime my Granddaughter went through 33 rounds of radiation each day excluding weekends and under a general anesthetic each time. That little girl was so damn brave and you could just see the fight in her, the will to carry on. The steroids were very rough on her though. they made her both angry and starving. She would push us away and hide under the bed right when she needed us most. she wanted to eat everything in sight and piled on the weight. All side effects from the steroids used to keep the brain inflammation down as she had radiation slammed into her wee head.

Taking a deep breath we managed to acquire CBD oil (a non-psycoactive oil made from hemp). It came with lab reports proving purity and we gave it to her in a small amount three times a day in a tsp of yoghurt. CBD oil can help with inflammation, it is a powerful antioxidant, it helps anxiety, nausea and it has been shown to kill cancer in animal models. It was enough for us. We saw her anger and anxiety lessen and she sailed through radiation treatment with no side effects that we could detect.  She regained her ability to walk and use her left hand and arm, her eye straightened out and the left side of her face wasn't droopy as it had been.

At the end of treatment she was sent home, a new home closer to all the family so more upheaval and no doubt grief for her. She was weaned off the steroids and began to get back to the weight she was meant to be. She continued having CBD oil, homeopathy and nutritional supplements. We had to wait six agonising weeks for a scan to see what had happened in her poor wee head. She did so many fun things in that time though and played and played like a normal 5 year old girl. We all made some wonderful memories.

All that time we had been researching Cannabis medicine and an important thing we learned was of the bell shaped curve in treatment effect with CBD. the fact that it began not to work so well after a time. We also learned of the Entourage Effect. The fact that all the compounds in Cannabis work together synergistically  in a much more helpful and complete way as medicine. We learned of the Endocannabinoid system which was discovered in the mid 1990's by  Dr Raphael Mechoulam, the scientist from Israel who also discovered THC. Cannabis medications work so efficiently because of the Endocannabinoid (EC) system, present in all humans and many animals as well. This system consists of a series of receptors that are configured only to accept cannabinoids, especially tetrahydrocannabinol (THC) and cannabidiol (CBD). We learned that both THC and CBD were listed as medicines in the 1984 Medicines Regulations Act of New Zealand. We learned of the fact that Cannabis can be prescribed in New Zealand. We learned that she needed the whole plant medicine, the essential oil with THC too. It is too much to describe the processes for application here but this is the link so you can see for yourself the process.

Now to cut a long story short, 5 months after diagnosis with my Granddaughter given only 9 to 12 months to live, with no other treatment options from conventional medicine available to her we have been met with road block after road block in trying to get her Medical Cannabis. No doctor wants to help us but I hope to hear from a specialist who is willing after reading this. She is weaker, her left sided symptoms are all back, she stumbles about like a drunken sailor, she gets tired very easily, headaches and nausea and I'm hoping like hell she doesn't have seizures. Oh yeah Cannabis can prevent seizures too but at this time we have been shut out of a medical system that should be there to support us and to help her even if it is just gentle and effective palliative care. Medical Cannabis has been used for years in Israel in palliative care for children such as our little one with good success. Please God, when will it be here.

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