Lanai Carter’s story

lanai2I am the carer of my son, a patient with a brain tumor and associated epilepsy.
Lindsay is the first person in Australia and Queensland to be approved by the TGA for schedule 9 Botanical Medical Cannabis.
The TGA approval is for Cannabis oil in a specific formulation including THC/CBD and other cannabinoids for treatment of his brain tumor, epilepsy, pain, nausea/lack of appetite and he is approved for Indica bud for vaporization for pain, nausea/appetite and epilepsy.
My son’s brain tumor causes intractable epilepsy which has not been able to be effectively controlled with anti – epileptic pharmaceutical medication and he has experienced a number of negative side effects from the pharmaceutical anti – epileptic medications.
My son and I spent most of 2014 in the USA for his medical treatment. After approximately 1 month in the USA obtaining medical treatment my son was recommended cannabis. He responded favourably to this treatment which controlled his epilepsy effectively. It also reduced his nausea, relieved his chronic headaches and assisted him with appetite stimulation.
The cannabis treatment has helped relieve debilitating symptoms so he could have a better quality of life. There has also been shrinkage and stability of his brain tumor when he is consistently on medical cannabis treatment. The treatment has also reduced the substantial Oedema (swelling around the tumor).
Since diagnosis with a brain tumor in 2013, Linday has lost a significant amount of weight. The medical cannabis is the only thing that helps to stimulate his appetite and enables him to eat most days. It has also helped him feel happier in general and able to cope better with his illness.
Unfortunately when my son would return to Australia and have weeks without cannabis oil we witnessed growth of the tumor on the following scans, along with a return to increased seizures, headaches and nausea and difficulty with appetite. My son suffered up to a maximum of 20 seizures per day (witnessed during awake hours) when he was not on cannabis oil. Cannabis provided quality of life which wasn’t available to him before the treatment.
Lidsay can now begin planning for a career and a life in the future with some level of independence instead of being reliant on a carer 24/7 because of seizures.

Every time Lindsay and I would return from the USA we would hope that the laws may have changed in Australia or even in NSW so that we could simply move across the border and he would be able to obtain legal medical cannabis treatment but this was not an option.
When we returned from the USA we had already exhausted finances and options of obtaining legal treatment . We were not prepared to watch our son deteriorate further without access to treatment.
As a family unit we were struggling because we had been separated across two continents (my husband and younger son in Australia and my older son and me alone in the USA). This was a sacrifice we had made in order for to get the medical treatment which was working for him. This was a difficult position to be in.
In Australia we could sense no urgency from the government in changing the laws. We were tired of the constant rhetoric by the government about doing something. There was plenty of talk and little action and by this stage we knew that even the announced trials (which were supposed to have started months ago now), would be unsuitable.
We knew that the proposed trials for Qld and NSW would not include medical cannabis in the correct cannabinoid ratios or forms that had been recommended and proven to control his epilepsy, fight his tumor and manage his symptoms.
There was definitely a failure by the government to acknowledge the urgency of this matter for our son and all of the other patients suffering.
I notified the state justice and health departments in writing that doctor would be applying for access to Medical Cannabis treatment to be imported from overseas for him through the TGA Special Access Scheme.
I told Qld Justice that we were not prepared to watch the tumor grow again without treatment. We were not prepared to watch his seizures, pain and nausea return and we notified justice that we would be sourcing cannabis locally until his TGA approval was in place and the approved medicine was available from overseas.
This was a very difficult time for our entire family. No parent should have to deal with the added burden or stress of breaking any law to just simply protect the life of their child, but health and future was at stake here. We had already witness tumor growth, seizures and debilitating symptoms return when he had been off treatment between trips to the USA. I was not about to watch that happen again.
As a mother my desire was to do my absolute best to be upfront and honest with the justice and health departments as well as doing everything I needed to protect health, life and future.
I knew at that time that I would never forgive myself if I didn’t make that decision to fight for my son’s life.
I faced the reality that politicians have more responsibilities on their hands than just the life of my son, to them he was just a number. I knew I was the only one who would truly fight for him. I was not prepared to wait for the government’s timeline because if I took that risk that it may be too late.
Every day in life mattered to us. Every day that passed without treatment would be another day I was at risk of losing him.
We had already lost 2 years of his life and education prior to diagnosis with this debilitating illness; I could not bear to think of more time lost. At the point of the doctor putting the application in to the government my son had already been suffering for almost 4 years.
Every day I would have to wait for his access to medical cannabis was another day where tumor could be growing, another day that he could suffer up to 20 seizures in one day, another day where my son would struggle to eat and lose weight because he had no appetite, another day where he would be suffering debilitating nausea and headaches.
It was another day where he would miss vital education because his sickness was impacting on his quality of life and future opportunities. It was another day where our family life was turned upside down.
During the year whilst we waited for the TGA approval, my son suffered multiple seizures where he aspirated. The saliva he breathed into his lungs during these seizures ended up turning to pneumonia and then lost even more weight as a result of that illness. As a family we were exhausted, so exhausted that we started even sleeping through his night time seizures.
As time progressed and delays occurred with the processes at a Federal and State level we commenced some legal processes and we also had to start petitioning and protesting. This was a very stressful time for me as and carer and also for us as an entire family. I had surgery and was protesting within a week and a half of coming out of hospital.
It was an agonizing and stressful time, stress that we didn’t need as a family but I continued to feel that this entire situation was unjust and wrong and was fully prepared to take this matter to court… I did not want to see any patient, carer or family have to endure this kind of ordeal just to simply get medical treatment.”

Posted in Uncategorized