It is very possible that local hospitals in your area have brain tumor support groups. Perhaps you would be helped by them.
You may be interested in the American Brain Tumor Association website if you need information about brain tumors. I see that they also have a website devoted just to kids.
In 1995, before computers were so common, they sent me a whole packet of information which arrived in one day. It included a marvelous little booklet (which was only 53 pages long) summarizing all the major types of brain tumors and treatments available. They never sent me direct fundraising appeals. Their newsletter contained articles about fundraisers, but no direct appeal. They also ran articles about doctors, research, etc. They’re a good organization. I sent them $200 to thank them and they still did not put me on a fundraising list.
Brain surgery 2 was Sept. 21, 2006, so it hasn’t been that long since the last one. I understand your fear. My own experience is that lots of information helped me to deal with the fear. I went into surgery in 1995 scared to death but knowing that this would be my best option.
In my (unprofessional) opinion, if your son got through the surgery itself without any of the possible complications (stroke, swelling of the brain, leakage of spinal fluid), it’s just a matter of waiting for the body healing. Your son has already had the surgery, so I would think that he will be fine. Stay in touch with the doctor, of course. He needs to get the stitches out. Dilantin was no big deal with me. I’m just one patient, of course.
Finally, you chose one of the best hospitals in the world.
Thanks for the info regarding the American Brain Tumor Association.
“My own experience is that lots of information helped me to deal with the fear.”
I couldn’t agree more.
We were on the way home when the neurologist called about the MRI. Come back immediately to Johns Hopkins. Peter will be admitted through the pediatric emergency room. He has a mass on his brain.
I’ve never had a more frightening moment in my life. My son Peter was very distressed.
But once we got there and the doctor showed him his MRI, and told him what sort of tumor he thought it was, and explained the prognosis and the course of treatment, everyone, including my son, started to feel better.
“In my (unprofessional) opinion, if your son got through the surgery itself without any of the possible complications (stroke, swelling of the brain, leakage of spinal fluid), it’s just a matter of waiting for the body healing.”
He did very well in surgery, and it recovering well. The stitches are the type that take care of themselves. He WILL have a very cool scar in the back of his head. ;-)
However, they were unable to remove the entire tumor because of its location. They got over 90% of it, but he will require further treatment - perhaps chemotherapy or perhaps radiation. As well, we’re a bit on pins and needles until the final determination is made that it’s benign.
So, there’s still some road ahead for my son.
But the prognosis is for a full, 100% cure and complete recovery. He will be entirely tumor-free before he would have even had an MRI in Canada.
sitetest