Clinical trials are an option but should be carefully considered. Clinical trials are conducted in phases and have to be rigorously followed by various eligibility criteria. Depending on what stage of the disease your child is in, can greatly affect the possibility of being accepted into a trial.
Clinical trials can cause adverse affects that are unknown to the medical profession. As a parent, you should consult the clinical trial neuro-oncologist to understand any potential drawbacks for participating. Quality of life is always an important factor and you should consider how much time will be spent travelling and having treatments.
Trials are conducted around the world and participating in a trial abroad will have significant financial considerations. Costs would include travel, living accommodations, meals and medical expenses incurred for the trial which may not be covered by insurance.
D.I.P.G. (Diffuse Intrinsic Pontine Glioma) is a rare brain cancer that is in the PONS of the brain. It affects approximately 30 Canadian children a year and approximately 350 - 400 children across North America and Europe combined. It affects mostly young children between the ages 3-12 but can also occur in teenagers and adults. It is inoperable and incurable. The average life span after diagnosis is 9-12 months with only palliative treatment options such as radiation to extend life expectancy by a few months. Clinical trials in Canada are extremely limited, most trials are conducted in the United States with Canadians having limited ability to participate at their own cost.
Symptoms can vary between children and every DIPG journey will be different.
Every DIPG journey is different depending on where and how fast the tumor is growing. Symptoms can vary and change dramatically in a short period of time.
Radiation is a typical palliative treatment option that can alleviate symptoms temporarily but this treatment also has side-effects such as fatigue, hair loss, radiation skin irritation, nausea and vomiting which can take away from the quality of life. Many parents will proceed with radiation but there are other parents that do not. Whatever decision you make as a parent, it will be the right decision for you and your child.
Tissue donation is a difficult decision in the face of losing a loved one. With advancements in technology, donations have lead to medical discovery in understanding DIPG over the last decade. Consult with your oncologists or PACT team if considering making this donation as part of the cure.