Topic: Update on Charlie

I haven't had a lot of extra time to write or check the board lately, but ALWAYS KNOW you are all in my prayers and thoughts.  The wonderful people here have helped me hang onto a little of my sanity throughout Charlie's illness.  Here is where we are now:  I think I updated a few weeks ago that there are no other medical interventions to try and that Charlie has a wonderful Hospice nurse, Karen visiting every Monday.  Charlie is down about 20 pounds in 3 weeks.  He is pretty bright orangish-yellow.  He always has a sense of humor though, talking about how white his teeth look now against the new skin color.  The itching from the bile ducts being blocked by tumor has been the worst part for him.  We've tried a multitude of creams and medicines.  He's on Remeron now, which is a psychiatric medication (antidepressant I think), but used off label for itching.  If that doesn't help in a day or two, I want to see if he can try Ramficin (read about it from Pauline on the site I believe).  Hospice doesn't have it, but don't see why we couldn't get it through Walgreen's.  Someone emailed me to try tea tree oil.  If all fails, I want to look into the possibility of an outside drainage catheter...anything to relieve the miserable itching.  Charlie had a high energy day on Sunday, going all day, church, visiting, etc.  Since then, he's been completely wiped out.  Charlie feels like he may have a few weeks left, but of course we don't know.  It's very hard on Sarah and Ben seeing their funny, energetic, strong Dad deteriorate so.  Ben (17) is seeing a Hospice counselor.  I can relate to some of what Ben is dealing with as I lost my Mom to cancer at age 17...very hard age.  Boys in general don't open up as much as girls and talk to their friends so I know it's tougher on him.  I'm sure Ben is thinking about his Dad not being here in June when he graduates from high school and seeing him off to college.  Our daughter Sarah (20) has a sweet boyfriend and lots of girlfriends for support.  They both still live at home with us.  All you caregivers out there, please take time for yourself.  That is something I really haven't done and need to.  I do ask for prayers for "a good death" for Charlie - no pain and surrounded by his loving family.  He is not afraid of continuing on his journey to heaven.  He knows we will miss him more than he does us and that we'll be there with him in the blink of an eye.  I pray for strength and comfort for all of us and for God's will to be done.  It is hard to accept as we are already in mourning for so many things that Charlie can't do anymore, but eternally grateful to have this precious time together.  Thank you for always being here for us!

Carol

Re: Update on Charlie

Carol, you sound like a wonderful woman and Charlie is so lucky to have you and your fabulous children helping him through this rocky journey. When you talk about his color, I have to chuckle as when Teddy first turned totally yellow and the doctor said you are really jaundiced I said, "you know I don't like you in yellow" Funny how we think of these inane little things. I am sure your sense of humor has helped you have the good attitude to get through this challenge.
Our prayers are with you and your family and we hope Charlie's road is not bumpy. For the itching we used ice bags and Sarna cream. Please keep us posted and stay strong. 
P.S. You are so right about the caregivers. I just let myself go these last 9 months and went to the doctor yesterday with high sugar counts, bursitis in the shoulder and bad yeast in the tummy!!! Hopefully I am on the right track now to taking care of myself!!! You take care also!

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.

3 (edited by marions Tue, 13 Jan 2009 17:03:38)

Re: Update on Charlie

Carol

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 Charlie

Dear Carol,
Charlie, you and your family are lifted in prayer.  Try to stay strong and be good to yourself. 
Karen

Wishing all God's blessings!

Re: Update on Charlie

Dearest Carol,
   My heart goes out to you. You sound like such a strong, brave person, and I know how very difficult this is for all of you. God be with you. Your family will be in my prayers.

Love - Joyce C.

Re: Update on Charlie

Hi Carol,
I will pray for you and your family.  My children are about the same ages as yours (16, 20, 22) and I worry about them and their feelings as well.

God bless you and your family.

Re: Update on Charlie

Hi Carol,
   I'm sorry Charlie and your family are going through all of this. It sounded like he was going to be able to have a lot more time after he was able to have surgery. I would definitely get him in and have an outside drain put in. I am kind of puzzled as to why the Docs haven't done it already. I have wondered this in other cases where people were basically poisoned to death by the bili back up. Our surgeon that does Tom's stent changes told me a long time ago that if his ducts became clogged and a stent was no longer possible they would put in an outside drain and he could live with that for quite some time. He has had outside drains several times and although they are a nuisance it is better than the itching and sickness.I hope Charlie can get some relief and does not suffer. Our thoughts and prayers are with all of you. Mary

Re: Update on Charlie

Dear Carol and Charlie,

Charlie sounds like he has a great sense of humor, and what incredible strength to be able to use it now for you and the children.  Please know that your family is in my prayers, and I pray for no bumps in the road ahead..peaceful with a glorious light.  I think about Charlie alot because he has had some of the same worries I have dwelled on.  I hope my courage matches his.

Sophie

Re: Update on Charlie

Carol,

I agree he should not have to suffer with itching if some drain is possible. It sounds like he still has quite a bit of spunk, more power to him. You are all in my prayers.

Patty

Re: Update on Charlie

Hello:  I'm a newbie here but my Mom (who passed on a couple of years ago) used to take Atarax to stop the itching.  It worked but made her very sleepy.  She was also on Vicodin to suppress any discomfort.  Slept alot and passed on without pain.

Re: Update on Charlie

Hi Carol,

Just checking in on how you and Charlie are doing.

Jan

Re: Update on Charlie

I've been keeping Charlie's Caringbridge site more up to date if you'd like to check it.

www.caringbridge.org/visit/charliepfaff

Jan, I hope your Dad is doing well.

Carol

Re: Update on Charlie

Hey Lainy, hope you and the Miracle Man are doing good.  For some reason, the Sarna didn't work for Charlie.  You know this cancer, it's just all over the place, what works for one doesn't work for another - so frustrating.  The hydrocortisone cream with Aloe seems to work best for him for a short time.  I think it's the cooling Aloe that helps himI know you'll stay on the right track and take care of your health Lainy.  I always keep up with you and Teddy.

Thank you Marion for your suggestions and information.  You always take such good care of all of us!

Thank you Karen - one caregiver to another.  Prayers for you too!

Joyce, how special you are reaching out to me with all you're going through.  I'm sure your dear Butch is on your mind daily.  I wish you the best.

Hey Mary, I'm puzzled too about the drain.  His onc says no, it can't be done, but the Hospice doc and another doc in the onc practice says yes. We're going to try to get to the bottom of it and get that drain. 

Sophie, I hope you're doing well.  We've kept up with you too.  I'm sure your courage matches his because I think God has picked special people.  There's a lot of reasons and bigger picture that we don't understand yet, but maybe someday we'll see. 

Hi Patti, hope you're okay since the loss of your Mom.  I think of you often.  You give such great information and support to everybody here.  Take care of yourself.

Thanks for all the support and prayers.  I pray for all of you too.

Carol

Re: Update on Charlie

Thanks Carol! You are such a lovely lady. I just wish we could all meet as I feel I have made the nicest friends on this Board. You are very courageous and I looked up your Caring Bridge and you have a wonderful family. You and Charlie sure make a beautiful duo. I know what you mean about the itching creams. Teddy couldn't take the cortisone stuff. One would think his Sicilian skin would be more tough. Oh, I forgot he has mellowed with age! Stay strong and keep up with the great attitude! We are all in your cheering section!

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 Charlie

Lainy, how I wish we could all meet for hugs.  What a blessed event that would be!! But, this is the next best thing.  I feel like truly caring, loving people are helping us and praying for Charlie.

Carol