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,
Phil
September 25, 2015 at 7:08 am
YES!!! GO PHIL!!! THIS IS FANTASTIC! WE ARE CHEERING YOU ON!
September 25, 2015 at 10:49 am
Haha, I actually knew who this comment was from before I read your name, Clare. I second that!
September 26, 2015 at 3:34 pm
Thanks Clare. I think i hear you.
September 25, 2015 at 7:15 am
I enjoy reading your posts every Friday Phil. This one made me sad that I won’t read any more for awhile but it also made me hopeful at the action you are taking. You encourage me with your love for life and faith in God. I’ll keep praying.
Su-Ann
September 26, 2015 at 3:35 pm
Thanks Su-Ann I really do appreciate your readership and especially your thoughts and prayers.
September 25, 2015 at 7:17 am
Phil, my heart will be with you all the way. If there had been this opportunity for Trev we would have grabbed it with both hands!! Bless you and Lenore, will be praying for you guys. Much love Hazel
September 26, 2015 at 3:35 pm
Thanks Hazel. Your words mean so much especially coming from a warrior like yourself.
September 25, 2015 at 7:22 am
You guys are an inspiration. Will definitely be praying for you guys. Sending all our love to your beautiful family.
September 26, 2015 at 3:36 pm
Hey Racheal, great seeing you the other day. Thanks so much.
September 25, 2015 at 7:23 am
You are awesome Phil!
We will miss the blog (and you!) but are stoked you are pursuing this treatment. We are constantly praying for you and Lenore ❤️
September 26, 2015 at 3:37 pm
Thanks guys, so appreciate your kind words.
September 25, 2015 at 7:25 am
Hi PHIL
We have always enjoyed your blogs and we pray for you. You are an inspiration. Be encouraged because as you say we do what we can. The Lord be with you as you travel and have treatment. We will keep on praying for you. The Lord bless you and keep you. The Lord make his face to shine upon you and give you peace. Our love to you. Pamela and David xx
September 26, 2015 at 3:37 pm
Thanks Pamela and David. Your prayers and thoughts are very much appreciated.
September 25, 2015 at 7:33 am
Praying for strength and courage on your journey PHIL. All the best with the new treatment and this courageous step. Rach and Stan x
September 26, 2015 at 3:38 pm
Thanks Rach and Stan prayers are appreciated.
September 25, 2015 at 7:34 am
WOW Phil, you hardly know me, but I am so proud of you and what you are doing. (I brought Hazel Overfield to visit you at the Source Cafe after her hubby passed away) I sure will be praying for you as you take this trip to Europe… good on you! And I pray that everyone who reads your Fridays with Phil, as I do, and rarely comment (except to Hazel ) will see God shining through your thoughts, actions and deeds as you face this disease with such bravery. May His peace and strength surround you all the days ahead. Gloria
September 26, 2015 at 3:39 pm
Yes Gloria I remember meeting you. Thanks so much for your response and your prayers so appreciate it.
September 25, 2015 at 8:03 am
Go Phil!!!!!
I am 100% in agreeance with you and will prayerfully supporting you on your journey.
May you know God’s presence and comfort and strength as you embark on this next chapter in life. Love and prayers, Julie xx
September 25, 2015 at 9:05 am
You and Lenore have always been and continue to be a great inspiration to us! We will continue to pray for you both as you head off to Europe, good on you! Looking forward to your updates as they come! God bless you both xxx
September 25, 2015 at 9:14 am
Great decision Phil! Thank God He has made it possible for you to get into the trial and that He has made it available. We are 100% behind you and continue to pray for miracles in your life. Your life is a miracle and your journey inspires many. Love you mate, Mick.
September 25, 2015 at 9:16 am
Phil, you have always been an activist and you are never silent when you are at it! God bless you as you go into this next part of the assignment Holy Spirit is taking you on. I bless you with this: “The Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you … and give you peace.” (Numbers 6:24-26). We won’t forget to pray for you and the family and for breakthrough victory over this enemy of the body called ALS/MND. May your voice continue to be amplified and bring joy. Love Lynne Wintergerst
September 25, 2015 at 10:33 am
This is wonderful news!
I will continue to cheer you on from afar and my prayers will continue for you both. Such a special couple with so much to give!
Exciting news about the trial! 👏
God be with you.
God bless you abundantly.
Safe travels,
Maureen B xx
September 25, 2015 at 10:43 am
Wow. Thanks so much Ps Phil for your encouraging blog. Your pearls of wisdom don’t go unappreciated. The way you have lived your life is so awakening to my spirit. All the best in Europe. So proud of you.
Love Alex
September 25, 2015 at 12:44 pm
Go for it Phil! More power to you!!
September 25, 2015 at 1:16 pm
Awesome blog mate,
“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”.
Love it, inspired by it and believing for it, Standing with you in every way, have a great trip, love ya, David, Samantha, Charlotte, Natasha, Rachael, Joshua
September 26, 2015 at 3:40 pm
Thanks guys. Your love and support does mean a lot to us. Blessings.
September 25, 2015 at 1:58 pm
Hey Phil, that is fantastic news and great decision. We pray that this will be a time of great blessing for yourself and Lenore, we love you guys so much and will continue to hold you in our thoughts and prayers. God bless you and keep you, we know he is with you all the way because “the steps of a good man are ordered by the Lord” which really says it all. Love you mate and Godspeed from John & Patricia
September 26, 2015 at 3:41 pm
Love you guys too John and thanks for your prayers. Maybe I should be taking a french speaking friend with me.
September 26, 2015 at 4:03 pm
She, make that “oui” we would love to go (how heavy are those bags)?
September 25, 2015 at 3:46 pm
We are thrilled that this opportunity is available for you Phil and that you are taking it. You, and your whole family, have been a great encouragement to both of us and we will certainly miss you. Don’t forget to have some fun visiting some of those places in Europe you haven’t yet seen. God bless you and keep you. Noel & Victoria.
September 26, 2015 at 3:42 pm
Thanks Noel and Victoria. Appreciate your prayers.
September 25, 2015 at 4:55 pm
Awesome Phil!! You go for it! You deserve all the life you can get! I will follow your journey on FB. Thank you for all the blessings you have showered upon us all here. I hope you put them into a book and publish them soon! They will raise much needed funds and bless many more people! Let us know where in Europe you are going as I am sure many of us would have contacts, friends and family who we could connect you with. 🙂
September 26, 2015 at 3:45 pm
Hey Jayne. Hope you had a great trip it looked amazing. Most of our time is in France. Unfortunately the laboratory is in a place called Bordeaux. Hard to take but someone has to do it.
September 25, 2015 at 5:12 pm
Keeping you in prayer Pastor Phil!
September 26, 2015 at 3:45 pm
Thanks Charlene.
September 25, 2015 at 5:23 pm
I definitely believe in managing the real until you get the miracle ideal.
Praying God’s blessing on you.
September 26, 2015 at 3:46 pm
Hmmm may have to steal that Shaz. “managing the real until you get the miracle ideal”.
September 25, 2015 at 5:24 pm
Thanks Phil for your many inspiring blogs, we pray peace for you and that the Lord would clearly show you what path to take, as the steps of the righteous are ordered by the Lord. We love you and are praying for you all.
Is there some way we can donate to help financially?
Love Neil and Kathy, Dustin, Michael and Jacob xxxxx
September 26, 2015 at 3:48 pm
Hey Kathy and Neil. Thanks so much for kind words. If you feel the Lord directing you in this way you could message me and ill send bank details. Blessings guys.
September 25, 2015 at 5:27 pm
Hi Phil,
THANKYOU so much for your recent email. I think you are very courageous in taking this next step re your health. I think it takes more faith to do what you’re doing than staying here and not attempting a different medical procedure. BLESS YOU, dear Phil! (I heard you speak at Nexus Christian Church when I was visiting earlier this year. One of the most inspiring messages I’ve heard in a long time. )
May you continue to know that “….each day HE CARRIES US IN HIS ARMS.” (Psalm 68:19)
Praying for you,
Diane Malins.
Sent from Samsung tablet
September 26, 2015 at 3:49 pm
Hi Diane Thank you so much for writing and your kind words. Appreciate your prayers.
September 25, 2015 at 5:46 pm
Many blessings for the tests and trial period may God be watching over you
Ed
Sent from my iPhone
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September 26, 2015 at 3:49 pm
Thanks Ed.
September 26, 2015 at 1:16 am
Hi Phil
I’m with you we all want as much useful, productive and sharing time as we can. We do partner with you in prayer
September 26, 2015 at 3:50 pm
Thank Mark. See you soon.
September 26, 2015 at 8:17 am
hi phil & lenore – good on you!! will be praying for you both & hope you get to see your gbaby – im sure skype will keep you busy. have just watched a doco early this morning on steve gleeson and the ‘no white flags’ campaign – was so moving and the battle an incredible one – and how his team around him helped get him to matchupitchu – incredible incredible & wonderful!! so, we are on your team – youre not out of sight / out of mind – i know your Mums prayers that she has prayed over you are powerful and still swirling in the heavens waiting to be answered – as are Lenores and your children. will look out on insta for updates – and praying unusual miracles and amazing favour in this time away. life is precious – worth the fight . standing with – an dpraying for the Camdens . love donna and stephen
September 26, 2015 at 3:55 pm
Thanks so much Donna and Steve. Steve Gleason what a story indeed. Your words and love are encouraging and they are deeply received. This disease does require a team as do most mountain climbing expeditions. Love you guys.
September 26, 2015 at 11:47 am
Our prayers and best wishes go with you Phil. Pray God will give you lots more time!
September 26, 2015 at 3:55 pm
Thanks for your prayers Carole
September 27, 2015 at 4:12 am
You’re a fighter, Phil, and a fighter, especially when fighting for life, uses every weapon at their disposal. I’m proud of you for not throwing in the towel. I’ll be traveling with you in spirit and in prayer. God bless you, my friend.
September 28, 2015 at 12:47 pm
Thank you so much Bill. Means a lot to me mate. Not sure if you follow NFL but I have just become a fan of the 49ers with our man Jared Hayne. Do you have a team? Just introduced one of the PALS here to Jesus.