Transitioning
Hi everyone,
This is a post from Tina, not Ken. I wanted to provide everyone with an update that Ken’s situation has gotten worse. He has had two seizures in the past 24 hours, is sleeping now most of the time and is eating less.
I want to thank everyone for their continued support with donations, meal train and all the other things that have helped us to get through this awful time.
All my love,
Tina
36 responses to “Transitioning”
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Ways to Help
Your thoughts, well-wishes, encouragement and positive vibes are a big help. Financial donations to my fight are welcome as well. Please visit my Donate page for an explanation of how and why donations are helpful.
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 
My heart is with you Tina.
Tina, you have done an excellent job of caring for Ken and I’m sure it is much to your credit that he has beat the predictions and the statistics. The two-way devotion has been very evident during this time. God’s Peace to you both.
Dennis Tarkington
Gadsden, AL
Dearest Tina and Ken,
Cherishing the time in Florida and the hugs XOXO Still keeping the faith and keeping you in prayer every day!
Love you!
I just want to thank you for sharing your story. I have been following your posts and want to let you know that I very much appreciate your openness, spirit and perseverance. I have a loved one fighting a similar battle and I want you to know how much you sharing your journey has meant to me. You are a big inspiration and I very much look up to you and your strength. Thanks again and know that my heart is with you and your family.
Same for me. I found your blog by accident when researching about my husband’s tumor and have been following, hoping for your miracle. Thank you both for sharing with strangers through this very private and harrowing time. Reach out anytime you need a shoulder….
Christy
Tina, My Thoughts and Prayers are with you and Ken! Peace be with you both during this transition you are facing and Ken’s transition beyond this horrible illness and pain.
Hi Tina,
Sorry to read this news…we’ll comtinue to say prayers for you both during this time.
– Mark
This is not the update any of us want to get, and not the one you wanted to give, but please rest assured that we’re with you and Ken in spirit, Tina. You’re both loved, and my family is praying for you two. Please keep us updated.
— Rob
Prayers are being raised worldwide for Ken and for you Tina.
We know the Lord hears our prayers…..may you know His peace surrounding you both at this time
Tina, we have all been so blessed to share this very personal journey with you and Ken over the past two years. You two have been so brave, so determined. Those qualities will carry you through. I offer you my emotional support, any time.
Dear, sweet Tina- Your tremendous love and care for Ken has made his life fuller, happier and healthier than it could ever be without you by his side. We greatly admire your strength and courage. Both of you are covered in prayer by us and so many others. Stay strong and take comfort in knowing you are being lifted up and loved by all who know you and many who have never met you . Please continue to keep us posted. We love you both!!
I came across your postings when searching for inspiration (I’m a year into my journey with a GBM) ken has often been that inspiration so I’m sad to hear things are not good. My heart goes out to you I can sense the love you have for one another. With love x x x x
Holding all of you in my heart.
May continued strength, love and peace be with you, sweet Tina.
Hi Tina, you don’t know me but I have been a follower of Ken’s story for a long part of his journey. I am sorry to hear about Ken’s recent seizures. I am also sorry that I have waited so long to post. My dad passed away from a glio this January at age 50, after a 14 month fight, and reading about Ken’s journey through his eyes has been a great help for me. My dads tumor was in the place where decision making occurs in the brain so my mom and I had to make all of the medical decisions for him. It was hard not knowing what he was going through and he could not communicate it to us, and whether or not we were even doing the right thing for him. I can’t thank Ken and yourself enough for putting his story out there. He seems like such a great person and I wish you both peace in the coming days and weeks.
Also Tina, I commend you on your dedication to being Ken’s caregiver. I have been in those shoes and people don’t understand how stressful and mentally taxing it truly is.
Tell Ken that he has done and is still doing a great job and that he’s done an amazing thing just by keeping this blog. I’ve never met either of you but have been following along for a while since my mom’s fight with GBM.
So much love and peace to each of you! ❤
Dear Tina,
It is heavy on my heart that you are having to write this post. I have been following your’s and Ken’s journey for some time now. I am making the same journey with my loving husband of thirty-three years. We are six months into it, and it is not any easy road to travel for anyone involved. May God give you a measure of peace as you, Ken and your loved ones go forward. As someone else has already stated, you and Ken are “covered by prayer”.
I have to let you know, Tina, that as a caregiver you have given me the strength that I need at times, to remember to be patient with my love, my husband, my best friend. I know that he loves me dearly, but sometimes he forgets for a little bit, but he always comes back to me.
Tina we just got back from Virginia and had messages from your Dad. Do not have his cell phone number. So very sorry about Ken. I know you took excellent care of him. Love Roger and Reba Griffith
Dear Tina I lost my wonderful brother after a 28 month fight with this coward disease. All we can do is what you are doing supperbely : LOTS OF LOVE ! This is what really goes and stays within us all.
A precious and wonderful couple you and Ken.
all my love and admiration from Brazil
Cris
Dear Tina and Ken,
Although far away I think of you both every day. I hope that you find the strength to carry on.
Dear Tina,
Love and prayers to you both. May God strengthen you more and more…
Dear Tina – thinking of both you and Ken.
Tina, we have never met, but I had the honor and privilege to meet Ken, in 2006, in West Virginia. As part of our RB pack, he is one of the nicest people I’ve met, in my time on the road. My thoughts and prayers are with him, at this time, to be free from pain, and also with you, for the strength I know it takes to get through this. I lost my mother to cancer in 2005.
I’m just an internet stranger, but I’ve been following this blog as I have a husband with GBM, too. From what I’ve read, Ken is a fighter and I’ll bet he still has a lot of fight in him yet.
Dearest Tina, I have been following Ken’s journey and keeping you both in my prayers.
Andrea
Tina, I too found this blog when my brother-in-law was diagnosed with GBM last year. He passed away in Oct 2012, less then four months. Please know I have been and continue to pray for all of you as you walk this journey. What an amazing fighter Ken is and an amazing care-giver you are.
I’m thinking of you both all the time.. Once we are affected with GBM it’s forever a part of our life.. My husband’s fight is over but I am always close to you and other fighters out there. ❤ I wish you both a peaceful time..
Love you both!! Hugs and kisses from all of us….
Tina –
The Lovemans are continuing to pray for Ken and you. Thank you for your gracious sharing of information during this time. All our love to you guys.
Andrew Loveman
I’m thinking of you both. You have been a wonderful support for Ken but i hope you look after yourself and remember to let others help care for you. Reading ken’s blog has helped me understand what my mother is going through and i truly cannot thank him enough for that. All my love x
Tina, I have been thinking a lot about you these past few days since you posted the update. I wish I had the words to tell you something that will make this part of the journey easier. But I don’t. But I do know how you are feeling right now as I went through this with my father this past February. My only real advice is to keep talking to him even if he is sleeping a lot, keep telling him you love him, hug him as much as possible, hold his hand. Which I am pretty sure you are already doing, but it is what made me feel comfort with my dad. There are so many of us out here in “blog world” that have been following your story and are hoping and praying for you. Much peace and comfort to you both.
~Heather
Hi Tina, I too am an Internet stranger, I have been following your blog ever since my husband was diagnosed in nov 2011 he lost his fight in feb, 14 months later. Keep strong. Lots of lovexxxxx
This makes me very sad.
Tina ,
Journey with a brain tumor is an emotional roller coaster for patient and care giving family alike.
Anyone who has been a part of this experience understands the difficulty of these ups and downs.
But no matter how long or hard the journey. No one feels truly ready for the letting go. Families need better prepare and to make the most of the time that remains with the Loved one.
Based on my own experiences with my father treated with GBM (DEC 2011 TO MAY 2013).
Sorry, another Internet stranger here. It must be odd getting comments from people you’ve never met, but I want you to know that I’ve been thinking about you and the hard road you’re on for the last few weeks. I’ve been following your story since my dad was diagnosed with GBM, and my hope is that you all feel some measure of peace during this time.
Tina, I’m very very sorry for your loss! I consider you both as friends or even soulmates, due to many similarities (hobbies, attitudes, treatment, outlook etc).I regret that I haven’t found the time to meet Ken personally but maybe I will find the time to connect with you one day. Stay strong! Dan xxx