(I agree with Ed, who mentioned earlier, that the news about TK's prognosis seems overly positive. It is very rare for someone with a GBM or stage IV malignant glioma – I think this is what he has – to live much beyond a year. And with his advanced age, his prognosis worsens. I wish the media would report the probability of what may come and maybe this would help publicize the need to put more money into researching a cure and/or prevention of brain cancer – and other cancers – altogether.)

The decision about where to go and what to do with the information that you or a loved one has been diagnosed with a serious brain tumor is a difficult one. I did lots of research online, and reviewed top 10 lists on best cancer centers and best neurology and neurosurgery centers in the US. Considering the seriousness and time sensitivity of my mother's illness, we knew there was no time to be going all over the country. Luckily, one of the best treatment centers for brain tumors was less than a 2 hour drive away from her home – UCLA. As far as getting in to see the best surgeons, we are not a famous or an exceptionally rich family, but we are persistent. I just called and called and called. I spoke to everyone I knew that might know someone that could get her in quicker. After diagnosis, we met with 4 neurosurgeons within 2 weeks and her surgery happened right after that. Very quick. Because we could see how fast the tumor was growing by my mothers increasing symptoms.

My mother's insurance did not cover her surgery or any treatments done at UCLA, but luckily my parents could afford to cover the surgery out of pocket. One thing we found out was that if you have no insurance, or are going to an out of network provider, ASK FOR A DISCOUNT! My father got sometimes up to 40% off the regular price of the various services because he was not going through insurance. The chemo and radiation was done at a place in network, so all of that was covered.

My biggest advice for anyone having to make these, literally, life or death decisions is do as much research as you can on doctors, treatments, meds, etc. (by internet, books, National Brain Tumor Institute, American Brain Tumor Society, anyone in the medical community you know), and don't be afraid to ask lots of questions and be a pest (a nice pest) by calling and leaving multiple messages, if necessary, to get your questions answered or get that appointment you need.

Good luck. Hope this helps.

After our daughter’s birth we had concerns regarding the causes for her Floppy Baby Syndrome. Floppy Baby Syndrome means she had low tone in her muscles and she felt like a rag doll when held. We went to two specialists who were unable to explain her rapid growth and low muscle tone.

We found allergy and asthma issues and developed a plan for dealing with them. Through her love of music and reading music we explore a language problem that focuses on navigation terms like prepositions in music therapy.

This March, our daughter saw a physical therapist to figure out her right side problem. Her muscles should work in pairs but they don’t when her calf muscles contracts, the shin muscles should relax. Her right side stays contracted so it needs to exercise to get these muscles relax more. The only way we can retrain the muscles is through walking and daily exercises at home prescribed by the physical therapist that we presently do and trips to the exercise club. So what our daughter is trying to do is strengthen up her right side and get the muscles to work together contracting and relaxing the way they should. Her left side is overly strong so the focus will be to get the right side stronger and get both sides of her body to work better together.

Our daughter’s learning style is best worked with on one to one bases. Her diet restrictions are less then when we first started this journey. We have found at least one genetic disorder that maybe one of the causes. This is how a treatment plan works for our daughter’s health issues.

A lot of us have health care plans that are stingey with what should be slam dunk treatments for things like high blood pressure or scratched corena. I've had the insurance company refuse to cover my treatment for an eye injury to remove a chuck of metal from the cornea. Give you three guesses what they would do with a brain tumor like Mr. Kennedy.

The sad fact would be that my course of treatment would be to make my peace with God and try to get my affairs in order before the cancer killed me. Surgury, chemo and radiation are kinda out of my budget range when I struggle to pay the bills. I can't work, I can't afford to stretch my life. The only real choice would be a choice to try and live a few more months or just end it before things got nasty.

For patients who are not wealthy or famous, it is much more difficult to obtain comprehensive care. I' m not sure that universal health care is the answer as it is likely that those individuals who have a poor expected outcome would not be treated as the available care could be rationed.