I have made my decision and it wasn’t one taken lightly.
It is with much thought, prayer, research, investigation and hope that I have decided to take a trip to Europe to have some tests and start a trial treatment that isn’t available here in Australia.
It’s not a cure, but it could slow down the progress of Motor Neurone Disease (MND, also knows as ALS) in my body. While I’m doing reasonably well, and have already outlived my initial prognosis, this is the time to act. It’s a “sooner rather than later” approach.
With ALS / MND, it’s not like you wake up one morning and suddenly you can’t do something. Instead, little by little, you lose your strength, some people faster than others. I’m the only one who really notices that decline day-by-day.
In the past 76 years, since the famous baseball player Lou Gehrig was diagnosed with this disease, there has only been one drug approved for ALS / MND patients: Rilutek. Rilutek was approved in the 1990s and is said to add 2 – 3 months of life to your prognosis. In some parts of the world this drug costs up to $4000.00 per month. In Australia, I pay only $37.50.
While I understand that there is more awareness, finances and scientists than any other time in history dedicated to finding a cure for this disease, I also understand that any new drug could take many more years to be released to the general community. In that sense, the money we are raising now is for the next generation of sufferers.
Some people have inferred that I should just relax and wait for God to heal me. My thinking is that when your daughter breaks her leg or your tooth needs filling, do you just pray or do you do what you can and leave the rest to God?
I’ve seen God miraculously heal people of cancer through divine intervention and I’ve seen God heal people through medical intervention. I’ve also seen people experience their healing through entering into eternity.
I have always seen God move in my life when I do my part and leave what I can’t do to Him.
Faith, trust, rest and hope are not couch potatoes, they are active and courageous as they approach the battle.
So for those who are praying, thank you, your prayers are effective and mean the world to me. Be encouraged, I am also doing what I can do to partner with your prayers.
My treatment in Europe will cost in the many thousands of dollars per year, but it has also been known to add 3 – 4 years to a patient’s life. Next week I go to Europe, hoping for the best, mainly because I want what you would want in my shoes:
I want more time with my wife.
I want to see my grandchildren go to school.
I want to be around long enough so they have some memory of me.
I want to hug my own children for as long as I can.
I want to be around to cheer them on in their lives and adventures.
I love this life.
I want to finish the race at the finish line, not mid-field.
And so, Fridays With Phil will take a short break. If you are interested in updates while I am away and post-treatment, you can follow me on Instagram (@pcamden) or Facebook.
I covet your prayers over this time,