Hi everyone,
I thought I fill everyone with our current situation. Sam has been receiving different types of Home Chemo this past Month consisting of Irinotecan and Temodar. The results seem insignificant at this point. Sam's pain levels have been pretty high so she is loaded up on pain killers to try and manage the pain.
As you probably know the Whipple procedure was taken off the table but another opportunity has presented itself. If you have been keeping up with the blog and reading the comments I’m sure you were excited as we were to hear the story of Caroline Turns. We have been in contact with her family and the Miami doctors. We were hoping to have been there two weeks ago but that all came to a crashing halt when our insurance company got involved and denied any and all coverage that has anything to do with a transplant. Their position is that the requested services (proposed multivisceral transplant) do not meet the definition of medical necessity found in the City of Highland Park’s benefit coverage.
After consulting with Sam’s doctors here at the University of Chicago and phone consultation with a very intelligent Pancreatic doctor at MD Anderson Cancer Center everyone is in agreement that Sam needs the surgery/transplant to have a chance at a cure. This needs to be done before the tumors have a chance to progress any further. So that being said we are flying to Miami anyway to meet and have a consultation with Dr. Andreas Tzakis the head of the transplant team. We hope to learn more about this multivisceral transplant, which was done successfully with 9-year-old Caroline Turns. Her situation was just like Sam’s and while she is currently still healing and recovering from the surgery in Miami, they feel she is now cured, cancer free!
In the mean time we hope that the City of Highland Park, Cigna insurance and the University of Miami Hospitals can come to a quick agreement to cover the cost of the only known cure for this stubborn disease, while we have this window of opportunity.
Thank you everyone for everything that has been, and is being done to help us, giving us the ability to take this trip to meet with the specialist. Thank you so much Marcjana Turns for reaching out to us, letting us know about your daughter. You have given us so much hope! We are also praying for her and your family.
Lots of Love, Chris
9 comments:
A silver lining in the clouds has presented itself. Best wishes on your trip to Miami. Love, hope and prayers are being sent from Ohio-Lori
This is really good news Sammy!! Best of luck with everything!!
Love,
Anna Wangler
Get everyone you know to sign a petition to Cigna--include with it the story of Caroline--There was a similar situation in California with Cigna and a liver transplant and they eventually overturned their decision.If you have enough people hounding them, it will work. Go to the news
Best wishes to you.
And for future reference, never accept your provider's word at face value, and don't waste precious time appealing to them. Do a little investigative homework, and find out what branch of YOUR state government is responsible for governing them. Appeal your case directly to THEM. (e.g., In New York, I've won many battles with the assistance of the NYS Dept of Insurance, and also the Office of Managed Care, which is part of the NYS Dept. of Health.) Alot of these offices have online complaint forms, so you don't have to waste alot of time filling out forms. Don't wait for your next crisis to arise. Look into at your first opportunity. And the best of luck with everything!
Bonnie D., Long Island, NY
Sammy, Sammy, so, Sammy, Banana, Bamma, Bo, Bammy, Fe, Fi, Fo Fammy, Sammy!
Hey Hey Kiddo. SO, a trip to Miami? Let me know how you pulled That one off. I'll try that manuver myself.
Uncle Mikey
Hi guys,
My thoughts and prayers are with you! Do what you need to do ! If you need anything you need ...i'm here!
love you guys
Nancy
Hi Sammy,
Sending prayers and good vibes your way! You are always in our thoughts. :)
Love,
Your cousin Jessica
Hi Sam,
I heard about your blog from my Aunt (Kay Sopocy). My name is Candace. I am not sure if she had talked to you or your family but I am very active with St. Jude Children's Hospital and for the last five years I have been running from St. Louis, MO to Peoria, IL (186 miles in 36 hrs = no sleep...yikes, yikes!!) raising money for cancer research. There are many teams that run from all over the state of Illinois for this cause. This run takes place this weekend on August 2. I started doing this run five years ago after loosing several friends to cancer. This year I asked my Aunt if I could run in honor of you and and your amazing fight. I am also hoping to spread your message from the blog you write. I have an awesome picture of you which I am on the outside of our Winniebego (sp? = i am a horrible speller) along with your blog address. Some members of my team are going to be wearing t-shirts that my Aunt gave, with your blog, while we run. I will try to take as many pictures as possible and send them to you. Thank you for being an inspiration. I know my teammates and I will be thinking of you while we are out running and although we will be tired and sweaty and gross and exhausted it will never compaire to everything you have been through. However, we will be running for you and we will use your inspiration to push us and to continue to run the 189 miles from St. Louis to Peoria.
-Candace N White
Hi Sammy! Lets get this thing rolling so you can get better already! :) I am constantly thinking about you and your family. Please let me know if there is anything I can do to help.
Take Care,
Lyndsey
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