http://www.people.com/people/article/0, … 59,00.html

Maybe this will help shed light on this disease!

2

(7 replies, posted in Thought for the Day)

In Hannah's Words: Why she is trying to raise money for the Cholangiocarcinoma Foundation:

Once upon a time

There was a women named Susan and she was one of the nicest people I ever met. She was funny and cool and so friendly.

In her life where a daughter and two sons.
I am the granddaughter Hannah.
My mom is her daughter Roni.

Roni was a woman of trouble and craziness and loved animals, and dogs.
My dad is Carl and he is a whack.

But now lets talk more about my nana.
She was so nice and joyful and peaceful.

But not all happy endings are so great.

One day she was a little ill but we new she could get through it.
She was perfect and we new she was going to be fine.
But she was going to face a very treacherous thing.

But everything was going to be ok with a good amount of help and believing would help us get through this. Now we where all taking good care of her and making sure she was ok.

Now she was very upset, she could not eat well and she was thinking about how this was going to end.

Now we found out she had a disease called Cholangiocarcinoma.
That was a kind of cancer that is very rare to get.

What was more bazaar was that 1 in 100,000 people get it.

But before her surgery she took me shopping and to restaurants and to do my nails and lots more.

Now I am helping out my mom and my dad to make sure everyone is ok and there is no crying.


CHAPTER 2 A TWISTED TALE

In all that was happening, before everything happened, in like 2005 I was enjoying a day with her doing lots of fun entertaining things like painting, playing with Yodi, JJ, Tyrone.
Also we always played monopoly and had Dunkin Donuts every night.

Now back to the cholangiocarcinoma thing. Now she has a helper named Linda who helps her with what she needs when she needs it.

She is right now back in New York enjoying her self.

She was told she might only live one more year or less or more.

Now I believe that she promised me she would live till my wedding day.

I have a feeling that one day I will remember when I wrote this book about cholangiocarcinoma and think back when everyday was like a happy face staring right back at me.

Also I will remember when I loved her as much as I do now and till I die.

In heaven I will be so happy to see my whole family.

My nana was getting better and better each day but, in my heart I felt she would never leave me, she would always be in my heart safe and sound.

I know one day I feel in my heart I will solve this cancer and help the people who might get it, stay healthy and happy. Which is something my nana might not be able to do.

But I believe she will try her hardest to stay happy and healthy.

Chapter 3 QUESTIONS For Questions

I really want to know more about Cholangiocarcinoma and
find a cure help people who have it or are going to get it.

Also when I am older I would like to be a doctor who could help people to try to think the best of it something my nana might not be able to do.

Another thing is to make people happy and healthy so they have high spirits so they will be happy. I don’t want people to think (owe well I am going to die and that’s it)
because that is not positive thinking.

Also for those people who don’t think Cholangiocarcinoma is not a big deal,
well then try to break it to them, but it is, and you can die from it.

Also if you think because I am a kid and I am writing a silly story well I am not this is very serious, and not a joke.

So if you know someone or yourself gets a weird felling or a ill feeling go to the doctor and maybe you have Cholangiocarcinoma.

Also this is something important to me, my family, and the doctors who cant find a cure besides chemotherapy.

The main thing is if you can think about my nice nana who is friendly, nice, fun, and caring.

Support the Cholangiocarcinoma Foundation.

Save a life today

Chapter 4

A New Beginning

If you saw someone you love, or a very close friend die,
or a sick friend - you would want to help them right?

I know I would help a friend in trouble.

But this cancer might not be able to be fixed so watch out.

My nana would always taking me boogie boarding and swimming.

Also when she stayed at a hotel we stayed up till the pool closed, and we had lots of fun.

Also right next to the pool across the hall was a café where they served Minnie pizzas and snacks.

We had so much fun and enjoyed it all.

Now I hope to see her soon.

Also, I also hope people will try harder to help find a cure to Cholangiocarcinoma (CC).


Be happy and don’t worry

Chapter 5 her dog Yodi

Her dog Yodi was one of the nicest dogs I have ever met.
He is kind and friendly and loves new people.
I hope one day I will have a dog like Yodi.

I already have a dog named Lucy, the same type of dog.
But my dog is smaller.

I cant wait to see my poppy, nana, and Yodi.

I am so exited and happy that I will maybe see them soon.

But I also might not .

But until then I will stay happy and remember when I saw her many times every year.

My nana is as strong as a warrior.

http://www.microgiving.com/profile/ronidinkes

Thank you for your support!

Hannah is 12 years old and going into 7th grade. For her Bat Mitzvah Project she she is trying to raise money for the Cholangiocarcinoma Foundation:

Hannah's Story:

Once upon a time

There was a women named Susan and she was one of the nicest people I ever met. She was funny and cool and so friendly.

In her life where a daughter and two sons.
I am the granddaughter Hannah.
My mom is her daughter Roni.

Roni was a woman of trouble and craziness and loved animals, and dogs.
My dad is Carl and he is a whack.

But now lets talk more about my nana.
She was so nice and joyful and peaceful.

But not all happy endings are so great.

One day she was a little ill but we new she could get through it.
She was perfect and we new she was going to be fine.
But she was going to face a very treacherous thing.

But everything was going to be ok with a good amount of help and believing would help us get through this. Now we where all taking good care of her and making sure she was ok.

Now she was very upset, she could not eat well and she was thinking about how this was going to end.

Now we found out she had a disease called Cholangiocarcinoma.
That was a kind of cancer that is very rare to get.

What was more bazaar was that 1 in 100,000 people get it.

But before her surgery she took me shopping and to restaurants and to do my nails and lots more.

Now I am helping out my mom and my dad to make sure everyone is ok and there is no crying.


CHAPTER 2 A TWISTED TALE

In all that was happening, before everything happened, in like 2005 I was enjoying a day with her doing lots of fun entertaining things like painting, playing with Yodi, JJ, Tyrone.
Also we always played monopoly and had Dunkin Donuts every night.

Now back to the cholangiocarcinoma thing. Now she has a helper named Linda who helps her with what she needs when she needs it.

She is right now back in New York enjoying her self.

She was told she might only live one more year or less or more.

Now I believe that she promised me she would live till my wedding day.

I have a feeling that one day I will remember when I wrote this book about cholangiocarcinoma and think back when everyday was like a happy face staring right back at me.

Also I will remember when I loved her as much as I do now and till I die.

In heaven I will be so happy to see my whole family.

My nana was getting better and better each day but, in my heart I felt she would never leave me, she would always be in my heart safe and sound.

I know one day I feel in my heart I will solve this cancer and help the people who might get it, stay healthy and happy. Which is something my nana might not be able to do.

But I believe she will try her hardest to stay happy and healthy.

Chapter 3 QUESTIONS For Questions

I really want to know more about Cholangiocarcinoma and
find a cure help people who have it or are going to get it.

Also when I am older I would like to be a doctor who could help people to try to think the best of it something my nana might not be able to do.

Another thing is to make people happy and healthy so they have high spirits so they will be happy. I don’t want people to think (owe well I am going to die and that’s it)
because that is not positive thinking.

Also for those people who don’t think Cholangiocarcinoma is not a big deal,
well then try to break it to them, but it is, and you can die from it.

Also if you think because I am a kid and I am writing a silly story well I am not this is very serious, and not a joke.

So if you know someone or yourself gets a weird felling or a ill feeling go to the doctor and maybe you have Cholangiocarcinoma.

Also this is something important to me, my family, and the doctors who cant find a cure besides chemotherapy.

The main thing is if you can think about my nice nana who is friendly, nice, fun, and caring.

Support the Cholangiocarcinoma Foundation.

Save a life today

Chapter 4

A New Beginning

If you saw someone you love, or a very close friend die,
or a sick friend - you would want to help them right?

I know I would help a friend in trouble.

But this cancer might not be able to be fixed so watch out.

My nana would always taking me boogie boarding and swimming.

Also when she stayed at a hotel we stayed up till the pool closed, and we had lots of fun.

Also right next to the pool across the hall was a café where they served Minnie pizzas and snacks.

We had so much fun and enjoyed it all.

Now I hope to see her soon.

Also, I also hope people will try harder to help find a cure to Cholangiocarcinoma (CC).


Be happy and don’t worry

Chapter 5 her dog Yodi

Her dog Yodi was one of the nicest dogs I have ever met.
He is kind and friendly and loves new people.
I hope one day I will have a dog like Yodi.

I already have a dog named Lucy, the same type of dog.
But my dog is smaller.

I cant wait to see my poppy, nana, and Yodi.

I am so exited and happy that I will maybe see them soon.

But I also might not .

But until then I will stay happy and remember when I saw her many times every year.

My nana is as strong as a warrior.

http://www.microgiving.com/profile/ronidinkes

Thank you taking the time to read her story, please consider donating, every dollar makes a difference.

My husband has not worked since my mother passed March 2012.

I kept praying and asking my mother to help, or send me a sign.

On July 16, my anniversary, my husband got a job. Of all days, he got 2 offers and took one. He gets his first paycheck at the end of this month - thank god.

She may not be here physically for me to touch and hug, but she certainly is here in spirit.

I love you and miss you mom!

mazel tov! wow, amazing news!

6

(2 replies, posted in Introductions!)

Lainy, can you get me 100 pamphlets, for Hannah Bat Mitzvah project she is going to raise money for Cholangiocarcinoma, in honor of of her nana: Susan Dinkes.

Thank you, love to everyone smile

roni

address:
3713 Birchmere Court
Owings Mills, MD 21117

Linda's Helping Hands- private care in the comfort of your own home
Linda Wilson
Baltimore, Maryland
443-310-0460

She is willing to relocate and she took care of my mother!

Linda's Helping Hands- private care in the comfort of your own home
Linda Wilson
Baltimore, Maryland
443-310-0460

She is willing to relocate, she is wonderful and took care of my mother.....

this appears to work, has anyone looked at this:

http://www.medical-center-cologne.com/hyperthermia/

http://www.iptforcancer.com/

11

(7 replies, posted in General Discussion)

Dear Melissa,
I think my mother was in denial until she actually passed. She never quite believed what was going, I think it was her protective shield. She did not really want to know and we honored her wishes by not telling her how bad it actually was, because it seriously scared her too much. Enjoy each moment, hold hands, eat icecream, smile, and laugh.
Sending prayers and love your way.
Hugs,
Roni
ronidinkes@yahoo.com
or you can find me on facebook

12

(3 replies, posted in Introductions!)

Dear Danni,
Never be scared, this website helped me through my mother's diagnosis, and her passing. We are one big family, feel free to vent, and let it out. We are here for you. Sending prayers and love to you and your mom.
Hugs,
Roni
ronidinkes@yahoo.com
or you can find me on facebook. always nice to make a new friend.

13

(8 replies, posted in Introductions!)

Dear Jeff,
I am so sorry to hear your sister is now fighting sepsis. Please know you and your sister are in our thoughts and our prayers.
Hugs,
Roni

14

(12 replies, posted in Introductions!)

Always wonderful to hear good news! keep us posted!!!!
Hugs,
Roni

15

(36 replies, posted in Introductions!)

Dear Brenda,
I am sending prayers your way. My mother was talking to her mother as well. I think is means, she is there in spirit, and is with him. Ask about roxinal it can be given under the tongue and works faster than morphine, they can also use a patch to help with pain. My mother was in and out. I would ask the doctor about in home hospice, to make sure he is comfortable at all times. Please keep us posted and know we love you and are here for you.
Hugs always,
Roni
ronidinkes@yahoo.com or you can find me on facebook.

16

(12 replies, posted in Introductions!)

Despite the scan results, I am glad he is feeling better. Sending love and prayers your way.
Hugs,
Roni
ronidinkes@yahoo.com or you can find me on facebook

17

(6 replies, posted in Introductions!)

Dear Cheri,
My mother also choose no treatment and lived almost 2 years. With any treatment comes side affects and I had to respect her wishes. I am sending you tons of love, support and hugs.
Please stay in touch,
Roni
ronidinkes@yahoo.com
or you can find me on facebook

18

(5 replies, posted in General Discussion)

My mother's left foot got really swollen, it was a backing up of fluids by the portal vein. Best thing we did was keep that foot elevate and rubbed her feet! She loved it and I believe it did make her feel better.

Stay in touch.
Roni
ronidinkes@yahoo.com

Dear Amy,
My mother refused chemotherapy and at first I was angry and mad at her and viewed it as she had given up "hope."

In reality she lived her life on her terms and she passed on her own terms. No regrets.

I learned it was not about what I would or would not do, the 19.5 months I had with her from diagnosis to the day she passed were wonderful.

She was not sick with chemo treatments, but lived her life and enjoyed it. She said she was interested in "quantity" but "quality. I have the tremendous respect for her for sticking to her guns, and not being swayed or pressured into something she was not interested in.

I have a wonderful woman who took care of my mother and frankly I believe she kept her alive by being positive. If you need help at home let me know, this woman is willing to move.
Sending love and hugs, from one caregiver to another. Please say in touch.
Regards,
Roni
ronidinkes@yahoo.com

The book "the better end" and "broken open" are awesome, I found much comfort in them.

20

(4 replies, posted in General Discussion)

I wonder how this new test works on CC. Maybe it should be used during a routine physical, it can't hurt! Watch the video! very interesting!


http://www.rawstory.com/rs/2012/05/23/m … ncer-test/

Dear 4Neil,

I am sorry you had to find us, but welcome you to the support and strength this wonderful foundation has provided for me and my family.

We are here for you, anytime.

Thank you for introducing Neil to me,  I feel your emotions, having recently lost my mother at 66. There is "never" a good, or better or best age, they all stink when the time comes.

Neil lives on forever in your heart and your telling stories of him, that bring smiles and laughter to everyone's face. Please stay in touch, and know that I am here.

Hugs,
Roni
ronidinkes@yahoo.com

22

(14 replies, posted in Introductions!)

Dear John,
Always wonderful to hear a hopeful, positive, happy story. Please continue to take of you, and please stay in touch. Cheers to 50+ more happy, healthy, hopeful years filled with laughter, and tons of smiles!!!!!
Sending love and hugs,
Roni
ronidinkes@yahoo.com

23

(26 replies, posted in Introductions!)

Dear Wilma,

Thank you for reaching out, remain positive, make every moment count. This disease can be a roller coaster, so just strap yourself in for a wild ride and only g-d know the plan. Take good care of you and your family, we are always here. I have met the most wonderful, strong, people on the website and am forever thankful for these friendships!
With love and hugs,
Roni
ronidinkes@yahoo.com

24

(19 replies, posted in Introductions!)

Dear Joe,
Your story brings tears to my face. I believe my mother followed the same path. She took that very same walk, and followed her heart, and what g-ds path was for. She was brave and it was not a quantity to time, but a quality of time with g-ds will and guidance. G-d held her hand March 17, at 66 years of age, they went for the forever walk, and I feel her strength and love more than ever before. I am not sad, but proud to have known her for the 41 years g-d gave her to me. There is a beautiful poem one of my patient's gave me: so I thought I would share:

The Weaver:
My life is but a weaving
Between my Lord and me,
I cannot choose the colors
He worketh steadily.

Oftimes he weaveth sorrow,
And I in foolish pride
Forget , He see the upper
And I, the underside

Not till the loom is silent
And the shuttles cease to fly
Shall God enroll the canvas
And explain the reasons why.

The dark threads are as needful
In the Weaver's skillful hand
As the threads of gold and silver,
In the pattern He has planned

Author Unknown.

Sending you love, smiles, laughter, hope, faith, and all things positive.
Please stay in touch.

Hugs Always,
Roni
Ronidinkes@yahoo.com

Dear Lita,
I recently lost my mother in March 2012 to Cholangiocarcinoma, she was 66. She did have the surgery with a 6cm size tumor, opted for no chemotherapy, and lived 19.5 months. We are here for you, sending love, hugs, and many prayers. Be positive, and follow your hearts, the rest some how works itself out.  Please stay in touch, you can find me on facebook or email me at: ronidinkes@yahoo.com

Love & Prayers to you and your husband,
Roni

p.s. Dr. Schulick has moved from Johns Hopkins to Colorado to be a Departmental Chair for he University of Denver Surgery Department. He gave my mother 19.5 months, and as far as I am concerned has is one of the most prominent surgeons in the field.