The Desiree Hines Pancreatic Neuro Endocrine Cancer Fund--
The young lady is named Desiree Hines.
A brilliant young woman, she has several scholarships to attend the Conservatory of Music at the University of Missouri-Kansas City to major in Pipe Organ Performance, and the Bloch School of Management’s Institute for Entrepreneurship and Innovation as an E-Scholar.
She also holds the Isabel Curdy Endowed Organ Scholar position at Grace and Holy Trinity Episcopal Cathedral in Kansas City. She is the First-known African American woman to be given an endowed Pipe Organ Performance scholarship position at a Cathedral church.
In the first week of April this year, she was diagnosed with non-curable, Stage-4 Pancreatic Neuro-Endocrine Cancer. It is a very rare type of Cancer. For 7 weeks, she was in the hospital, critically ill. Most of the time was at Truman Medical. But, one stay was at St. Joseph's.
Prayer and faith has her still alive, in treatments, doing very nicely, and she occasionally works as a Church Pipe Organist when she has the energy to do so. She has no health insurance, has not been able to work long-term employment since her diagnosis, has had to be moved into a Residential Nursing/Assisted Living Facility, and must pursue very specialized treatment for her Cancer that is not available in Missouri.
To make this more familiar, Pancreatic Neuro-Endocrine Cancer is the exact type of cancer that Apple CEO Steve Jobs died from. It is extremely rare and only 5-6 Hospitals in the United States have clinics that treat Neuro-Endocrine Cancer with treatments that are specifically made for it. Other doctors and clinics have to use treatments for other types of Cancer and just wait and see what happens.
For example, Desiree’s case is being treated like it’s Small Cell Lung Cancer. That’s the best the doctors in Kansas City know to do. But, she now has to go to a Neuro-Endocrine Specialist in New Orleans to seek the specific Neuro-Endocrine treatments. Stage 4 is the most advanced. At that point, it can not be cured. But, with treatments, people can live with and successfully manage their stage 4 Cancer for many years.
An abbreviated timeline
March 22, 2012--Diagnosed with C-Diff Collittis, a bacterial colon infection.
March 29, 2012---Returned to Kansas City from Spring Break; Rushed to Truman Medical Center E.R. with severe Abdominal Pain
March 30, 2012---admitted to prepare for Biopsy after doctors discover that her liver is much, much larger than it should be; growths found via CAT Scan on Pancreas and Liver
April 2, 2012--Liver Biopsy, inpatient
April 4, 2012---Diagnoses of Pancreatic Neuro Endocrine Cancer, at Stage 4. She is told that Neuro Endocrine Cancer is rare and can be aggressive when it decides to show up. But, she is also told that it is indeed a slow-growing Cancer. She is also told that the cancer has spread (or Metasticized) to her Liver.
Options given are Chemotherapy, or movement into Hospice Care. Desiree chooses Chemotherapy. Initial idea was to use outpatient Pill therapy.
April 6, 2012---Discharged from Truman with chemo date beginning April 20.
April 9--Desire becomes heaviliy Jaundiced and is Re-Admitted into Truman with Pneumonia. Doctors say her Bilirubin is significantly high, which means she was entering Liver Failure. The more aggressive, traditional infusion-style chemo is suggested by Oncology fellows at Truman, since Desiree's case is very aggressive and critical.
April 17--Chemotherapy begins, inpatient
3rd Week of April 2012--Desiree is moved into Corner Brook Place in South Kansas, City. This is a combined Nursing Home and Assisted Living Complex.
1st Week of May 2012--Desiree is hospitalized at St. Joseph's Hospital in Kansas City. Her Platelets and Cell Counts went critically low, and she was giving off abnormally large blood clots from her sinuses. She is given antibiotics to fight off another diagnoses of C-Diff Collittis and finish killing the Pneumonia. She then gets a significant Blood Transfustion and Platelet infusion.
3rd Week of May 2012--Desiree is hospitalized again, at Truman Medical Center. Endoscopy is done to see if there is internal bleeding.
Fast-Forward to late August-September 2012
After 6 treatments of Carboplatimum and Etopocide, Desiree is doing well.
August 23, 2012--Desiree visits the Radiology Oncology Clinic at St. Luke's Medical Center in Kansas City to visiti Dr. Schomas. She reports that he is brilliant. She learns that 50-60% of Neuro Endocrine patients WILL get Cells and Tumors in the brain. After radiation, the chance drops to 10%.
Radiation is strongly suggested by St. Lukes Medical Center. Desiree sets up appointment for September 24, 2012 to begin Radiation to the Brain.
September 11, 2012--Desiree visits the Neuro Endocrine Tumor program at LSU/Ochsner Medical Center in Kenner,LA. She visits Dr. Woltering and Dr Ramirez is also brought on the medical team. This is one of about 5 clinics in America that has a team of doctors that are considered "expert" in Neuro Endocrine Cancer, and are dedicated to treating it.
She told Team-Desiree that it felt so good to walk in and see "Neuro Endocrine Tumor Program" on the door! She knows she's getting and pursuing the absolute best specialized care for a rare Cancer.
Doctors tell Desiree that there's a little activity trying to happen in the Lungs as well. But,the Chemo is what they would have done at Kenner, and a very good regimen for Neuro Endocrine Cancer.
They need to re-stage it now that she is done with Chemo.
They seriously need special types of medical tests that are made exactly for Neuro Endocrine Tumors. But these tests are extremely expensive. Bloodwork is about $2,000 and the OctreoScan an "MRI on Steroids" as Desiree calls it, must be done, and its about $10,000.00. Even stronger than a PET Scan, an OctreoScan will go into Deep Tissue and show them tumors that they can't find in traditional tests.
But, those are the tests it takes to get deeper into her body to determine where the Neuro Endocrine Specialists need to go.
Small Gifts---Lots of People---HUGE Potential!
10,000 people give $1.00---$10,000
Covers the cost for Desiree's special tests made for Neuro-Endocrine Cancer that doctors need to run to see things that normal Cancer related lab work can't.
10,000 people give $5.00---$50,000!
Covers the special Neuro-Endocrine tests, pays off her Chemo Therapy, and sends her to Switzerland for the special PRRT Treatment that is extremely effective for Pancreatic Neuro Endocrine Cancer Patients.
10,000 people give $10.00--$100,000!!
Cover Desiree's complete medical costs for at least 5 years, and half the money what it takes to possibly do a Liver Transplant.
10,000 people give $25.00--$250,000!!!
Desiree could have all the tretments, and possibly have the Primary Tumor taken out, AND maybe even a Liver Transplant...AND...set Desiree up for good medical care for as long as she lives.
Special tests that Desiree needs that are made specifically for Neuro-Endocrine Cancer, or used by doctors to see how far along Neuro Endocrine Cancer is, because it hides itself very well. That's why the international symbol for Neoro-Endocrine Cancer is the Zebra.
OctreoScan and Blood Work that looks for special Neuro-Endocrine "Markers"--Approximately $10,000. The OctreoScan will let the doctors see things that MRI or PET Scans won't. Special NeuroEndocrine Cancer Bloodwork will show doctors just how aggressive Desiree's tumors are.
Special Treatments that have proven to be very effective for Pancreatic Neuro-Endocrine Cancer that we wish to have done for Desiree
PRRT (or Peptide Receptor Radio-nuclide Therapy)-- Most people go to Switzerland to have it done. We hope that we will surpass our goals and be able to send Desiree for one of these tretments.
PRRT is not yet fully approved approved in the United States by the FDA. Most people go to the University Hospital in Basel Switzerland. There, it's around $4,200 for just one treatment. But, this does not include hospital stay and international travel costs.
The FDA has approved a company called Excel Diagnostics Imaging Clinics, based out of Houston, TX to begin an investigational new drug trial for PRRT. There, it costs around $15,000. So, Desiree could have it done in the United States. But either option is costly, as international travel is around $5000 per person with housing and airfare.
According to a Neuro Endocrine Cancer Specialist in Iowa, patients typically have 4 of these treatments.
The Primary Tumor on Desiree's Pancreas can possibly be removed. That would be at least $30,000
Help us keep this talented musician and wonderful person alive, well, and in Kansas City...and the world!
Thank You for your support and we look forward to hearing from you soon!