Topic: My heart is breaking for a family I never met

Hi all, it's been a long time since I posted here. I do come back to see how ever one is doing or for new grief advice. My mom passed away with this dreadful disease back in 2011. Just this weekend a friend posted a picture of her co-workers darling 12 year old son who is battling this disease. My heart is breaking for them. I feel like I need to be doing something for them. Yes, I can donate to the organization that is collecting for them. And they are doing plenty of fund raisers that are close to me, so I can stop by.

Anyone with younger children any advice on what this 12 year old needs or might like?

Doctors all say this is a rare form of cancer that is for the elderly...how do we all make a difference? This just isn't the case anymore. Pamela's daughter, Lauren,  was so young and vibrant. How can doctors just say this disease is a fluke and you've been dealt bad cards.

Sorry, for my rant, I'll go back to the reason for my post. Any suggestions on what to put together for a 12 year old boy would be greatly appreciated.

Re: My heart is breaking for a family I never met

mn....thanks for chiming in.  Know that your dear Mom will never be forgotten on this site and in our hearts and that it is wonderful for you to pop back in on us.
We too are stumped and horrified that a child so young is diagnosed with this horrible disease and are in communications with others sharing information about this case.   The latest I have heard is that MD Anderson is in communication and it may very well be likely that he has been transferred to Texas or that the physicians are working closely together. 
The Cholangiocarcinoma Foundation is ready to support any efforts on behalf of the family as soon as we are given more details.
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: My heart is breaking for a family I never met

Thank you Marion for responding to my post. I hope all is well with you. I am glad to hear they are in touch with MD Anderson. Dr. Lens, here is very knowledgeable, but after that im just not sure. I did pass on the Cholangiocarcinoma foundations message board info. This proved a great tool for me.  However, I stumbled across the website 8 months after my mom was diagnosed.

Re: My heart is breaking for a family I never met

Michelle...I hope that you are fairing well.  Your daughter must be all grown up!  Are you still with your teaching job?
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: My heart is breaking for a family I never met

Dear Michelle this just breaks my heart as well. Way back when we had our 'Memorial' page with pictures I once saw an 11 year old girl on it. I just don't understand.
You want to do something and the only thing I can think of is a one mile walk for children. And that they would be walking for this little boy with signs and colors of green. They could even collect sponsors for every block walked. I would even try to get a local TV Station to talk about it. All I can do is send my best of everything to this child.

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: My heart is breaking for a family I never met

Hi all, I don't know how many of you have a facebook.  But the family is on there, and on the Bile duct cancer awareness group on Fb as well.  They also have a caringbridge site too.

Hope, love, strength...2013 and for the years to come, Porter.

Re: My heart is breaking for a family I never met

Stacie has traded emails with the cousin of the young boy and another person affiliated with foundation has spoken with the Dad.  We are awaiting additional information.
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: My heart is breaking for a family I never met

I have been following their story on FB and it is so heart breaking. Do they know about this site? We could be a good support system for the family. Praying for them daily.
Lisa

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: My heart is breaking for a family I never met

Michelle,

I too was shocked and saddened to hear of this sweet little boy fighting this disease at such a young age.   My husband was 62 and I thought that was young, but now there have been more & more younger people being diagnosed with this "rare" cancer.

Don't have young ones so can't help much with advice on that.     

Nice to hear from you even tho' it is for a sad reason and hope you and your daughter are doing well.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My heart is breaking for a family I never met

Here is Christophers facebook page.  I did ask if I can share it:

https://www.facebook.com/teamcjwilke?ref=br_tf

There is a fundraiser for this family this weekend, so if you happen to be close to the Burbank area please stop by.  I did hear from the family friend, and Christopher came home on Hospice care.  I am beside myself.  So sad, such a beautiful boy.  Please keep him and his family in your prayers.

Re: My heart is breaking for a family I never met

Hi Michelle,

It's nice to hear from you again. I remember when your mom passed and remember how beautiful her picture was. I hope things have gotten a little easier for you. Thank you for mentioning my Lauren. It's always nice to have a loved one remembered. I remember you were always sweet with your comments. I also follow Christopher's Facebook page. He is such a beautiful boy and it also breaks my heart that he has to go through so much. I hope this is not a trend with younger people getting this cancer. I wish nobody got this cancer!! I am at a loss as to what Christopher might need. I think a donation would probably be what they need the most. Take care, Michelle.

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.

Re: My heart is breaking for a family I never met

Thank you Pamela.  I appreciate your kind words.  I do think of Lauren often and I am still surprised she didn't beat this thing.  I did order Christopher a bunch of books this morning, and then got news that he wasn't doing well.  Everyone was so kind when my mother was ill and she loved her home decorating magazines while she was going through chemo.  And Pamela, yes, you are right, a donation would be the best way to go.  I'm sure the family needs as much support as possible through this.

Re: My heart is breaking for a family I never met

If anyone reading this post is friends with the family, my husbands knows how much this story has bothered me. And he knows how important it is to bring awareness not only to this disease but to help out the family. He has brought this story to his reporter who would like to do a story about the family. He works for Fox News. I emailed a family friend but have not yet heard back from her. I'm sure mom and dad may not be up to it, but if any other family members are willing please let me know. I was hoping to have the story run before there next fundraiser this weekend.