Living with a Child with Brain cancer

Video Transcript

My name is Jeanette Vincent and I am mother to Jordan Vincent. And Jordan has a cancer that is covering her brain and going down her spinal cord. The early symptoms were severe headache which led to double vision. And it was a headache that she would wake up from a nap screaming from the pain and she couldn't keep anything down, including the Tylenol to try and help the headache. And we knew when the double vision came on that there was just--something wasn't normal and it wasn't just what they thought which was a sinus infection. We knew that it was more than that. When we were told the diagnosis was cancer, it's hard to say that it was a good thing but at least we knew now what we were dealing with. For the 18 months up to that, we just didn't know what was causing her problems and her symptoms. So in that sense it was--okay now we can go forward, we can move forward 'cause we know what we're dealing with. Her first treatments were quite easy. It was at home, oral-based medication that we mixed in her apple sauce and put also cinnamon and sugar to cover the flavor. The next phase of treatment was all intravenous and she was on two different medications. One of them she had severe side effects from, severe neurotoxicity, and she ended up in a wheelchair for several months, not able to walk at all. So they've stopped that one drug and continued with the other one that she was on. And they continued on that drug for quite a while and every several months she does MRIs so that they can gauge the effectiveness of the drugs and when they see that it isn't having any more effect then they switch. So now she is on her fifth chemotherapy drug. My support group is mainly my family. I reach out to them when I need to. There is also a group at Children's Hospital that deals specifically with brain tumors. It's a good support and you meet other parents who are dealing with not just children with cancer but specifically with brain tumors. I do go online a lot to look for different websites and just read different stories, different people's stories that's good outlet for me. She is on a certain number of medications so that is obviously the first thing we do is get her medications done. And getting her into the right frame of mind for that day depending on what the day is. I try to be-have a normal, as normal a life just as I can, just as I do for her so that when we're in the moment, when we're at the hospital then I'm dealing with it. But if I'm not there, I'm trying not to deal with it. Everyday is a new day and you will be amazed at how strong your child can be and the things that they come up with and ways that they're able to move on and it's just amazing to watch that and in order to be able to appreciate it, you need to be strong yourself and realize that every new day has possibilities.