Topic: Update on our son, Jeff

Hello CC Family,
We haven't posted on Jeff in a while. His last PET/CT in the end of June was bad. Disease has progressed & Taxol was ineffective for Jeff. Our ONC put him on Tarceva. He has developed the bad facial rash that is typical for this drug.

He has lost a lot of weight (& didn't have much to lose to start with). Get's pretty fatigued. Still does not seem to need pain meds. Not very much ambulation. Most waking hours spent in chair or wheelchair. He has just started to develop bed sores. Nancy and I are trying to manage this new challenge.

He still wants to go in to work & is able to get in most weekdays or 1 to 3 hours. Again his employer has been unbelievably supportive throughout this process. Jeff continues to amaze us with his positive attitude.

Next PET/CT in a few weeks hope & pray for better news.

Please keep our Jeff in your thoughts & prayers along with everyone else in this very special CC Family.

God Bless.

Bob & Nancy
jeff'smom&dad

Re: Update on our son, Jeff

Dear Bob & Nancy, I am so very sorry to read that last PET was not good. You both must be some gifted kind of parents. To have a child go through this with such a wonderful attitude. Your son is a gift as are the 2 of you. I do have one suggestion for bed sores. I am not sure what it is called but you can probably Google around and find it. I call it a Lambs Blanket. Made out of Lambs wool and fits the length of the body. Teddy loved it and never got a sore. Can also be put on the wheelchair. You continue to be very strong and I will continue praying!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on our son, Jeff

Bob and Nancy....thank you for sharing this with us. Please know that Jeff has touched the life of so many and that his determination and perseverance in spite of adversity continues to shine through. 
With all my heart I wish for stable disease and continued strengths for a special young man and his loving parents.  Please stay in touch.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on our son, Jeff

Bob & Nancy,

Prayers for the both of you and for Jeff.

Re: Update on our son, Jeff

Bob and Nancy,
Love, strength and prayers to you both and to Jeff. He really is amazing... Clearly your and his employers support are too. I am grateful to hear he is not on much discomfort. Let us know if you find the lambs blanket Lainey spoke of and if it helps Jeff.
Sincerely,
Willow

Willow

Re: Update on our son, Jeff

Dear Bob and Nancy,

Thanks for letting us know what is happening with Jeff, and I am real sorry to hear how things are going for him right now. For sure I will be keeping you all in my thoughts and I so wish for much better news from Jeff's next PET/CT. Ton sand tons of positive thoughts are coming Jeff's way.

Thinking of you all,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on our son, Jeff

Dear Bob and Nancy,

The 3 of you are incredible.  I am willing the news to be better for Jeff and will keep you all in my thoughts.

X

Clare

In the stars now . . . .

8 (edited by mparsons Thu, 08 Aug 2013 20:18:28)

Re: Update on our son, Jeff

Dear Bob and Nancy,

I am truly sorry to hear this latest report, but am grateful to you for sharing it with us. Having now met Jeff personally, I can attest to his positive spirit. He is a remarkable young man, and you obviously are wonderful parents. We continue to lift you up in our prayers.

Mark and Jeannemarie

Re: Update on our son, Jeff

Dear Bob and Nancy,

I am so sorry to hear that Jeff's last scan was not a good one. We can only hope that his next one will be better. He is such a trooper with still wanting to work. He is so lucky to have such kind, loving parents and you are lucky to have such a brave son. My prayers are with all of you. Take care and God bless.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.