Celebrating Small Victories
We just celebrated me successfully sitting down without assistance from anyone. How SAD is that (celebrating simply sitting down on q big couch nonetheless?.)
Let me — elaborate: lately, some of the most basic tasks have become difficult or rather my mind or body give out before I can do something simple like lift a foot up a step. My body has been weak for a while, but now things seem to be more like neurological deficits, maybe little seizures. This past week was particularly challenging. Luckily we had good friends and family visiting to lend a hand — to help me move from spot to spot and make it to the bathroom or into the house after going outside for some fresh air and vitamin D. Also, to pick me up from lying on the floor. Sometimes I just have to find the floor and lie down before my quivering limbs drop my body limp. It doesn’t seem to me like I’m so feeble but it has been bad. And I know I’m still ahead of the curve. Many brain cancer patients are worse off.
Hopefully that helps illustrate how difficult things can be for me/us these days. I wish I could convey more clearly what life is like for Tina and I now. While things are difficult, it seems like we adapt and things aren’t that bad. I shouldn’t speak for her though.
That little celebration was on the heels of a week fraught with accidents and difficulties. Now, as I finish this post, I’m proud to report that I was able to move about the house and ascend the staircase to our bedroom unassisted (always supervised by Tina, but at least on my own.) If that changes we may have to get a hospital bed brought into the living room. Typically, when a person is admitted to hospice it technically means they are no longer pursuing aggressive treatment. Our mindset is aggressive still though, e.g., we are still fighting hard and are also waiting to hear back to see if I got approved for compassionate use of CDX-110.
Some useful equipment we have begun using are a wheelchair, walking cane, handheld urinal, protective underwear and shower chair.
I am proud and thankful to have friends that I regard as close as family and who consider us family. People who came into our home this week and made sure we had all the help we needed; helped keep us calm and relaxed and happy.
19 responses to “Celebrating Small Victories”
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Meal Train
Sign up to bring us a meal via Meal TrainMEALTRAIN WAS A VERY HELPFUL RESOURCE FOR US BUT NOW IT HAS EVOLVED INTO BRINGING US SPECIFIC UNCOOKED INGREDIENTS BECAUSE of the wtict diet we are on.This is just as valuable to us though..
A glioblastoma journey 
God bless you all ! You are truly a fighter, inspiring us all do live and love better ! Always here proud of you and Tina
cristiana from rio de Janeiro, Brazil
“Victory at all costs, victory in spite of all terror, victory however long and hard the road may be; for without victory there is no survival.”
Winston Churchill
To continue the Churchill “…never, never, never give up”
Ken, while I’m so sorry to hear of those setbacks, I’m so proud to see how positive you remain. Wish I were closer so I could help out, but know you are in my hear and prayers every day.
Prayers continue from around the world for you and Tina.
May you be richly blessed with peace and comfort
Thank you Ken and Tina for being such an inspiration and being so open about this whole ordeal….we are honored to be able to get a small glimpse of your trials and triumphs. Thank you for sharing your life with us! We are blessed to be part of it…even looking in from the outside. You are a fighter….keep fighting…..keep smiling 🙂 keep loving… ❤ You have so many people, worldwide, most that you've never met but have been so touched by your story, praying for you and keeping your flag raised!! Sending lots of love and prayers your way today. Remembering those hugs in the driveway….XOXO
Annie
Tears in my eyes, Ken. You are a true warrior in this bt battle. Keep up the good fight for you, sweet Tina, and for Rusty. I know in my heart that Rusty is pulling for you, in spirit. “Cheers” for you and Tina, family, and friends.
Hi son, What an awesome visit Albert and I had with you and Tina yesterday. You’re “small victory” was huge to me. Tina’s care is and the new diet are surely the right prescription no doctor could write. I look forward to seeing you tomorrow your 43rd birthday! ! Much love and kisses, MOM 🙂
Ken:
We admire your determination and bravery.
Love,
Liisa and Ken
Ken:
I’ve been reading your posts now for about 6 months and this is my 1st post to you. Your tenacity has been incredible and you have given hope to so many people stricken with this diagnosis. I pray you and your wife Tina stay strong and know how many people’s lives you have touched. Have a happy birthday tomorrow and please know that many of us think of you every day.
Many blessings to you,
Kathy
Happy Birthday ken !
The fact that you typed that whole post is a huge accomplishment. Thank you again for sharing. I have been thinking about you and Tina, although we have never met, a lot these past few days. I can’t begin tell you how amazing I think you both are. I know I have said it before, but I really think you are an incredibly brave man that has been an inspiration to so many. I wish we lived closer and I would love to bring you dinner and tell you in person all these things. Keep fighting on. Wishing you my best. ~Heather
Happy Birthday Ken! All the Moore’s are praying for you and sending our strength to you. You are truly an inspiration buddy.
Nate
Happy 43rd Birthday, Ken!! And yes, celebrate those small triumphs – sometimes the richest things are those little cherished moments on the good days. You and Tina are constantly in my thoughts and prayers…Comfort and peace to you both. Laura
Belated birthday wishes Ken..God bless u..
Hi Ken,
Belated birthday dear Ken.. Hope u had a great day. God Bless you
I always say, where there is life, there is hope. So glad you’re so positive and that you have so much support.
Ken, stay strong. You’re a fighter.
The small victories are victories, nonetheless. Though you and Tina are in Atlanta, and our families have never met, we feel love for you and Tina as though we’ve known you a long time, you have family here in Gainesville. Stay strong, fight each battle, you’re an awesome person.
Your strength and resilience is an inspiration to us all, Ken. The testimony and love of your many friends and family are truly wonderful gifts and a true tribute to you. I keep you in my thoughts and prayers so frequently. God bless you and Tina. Laurie Christie