In 2021, my husband James barely survived a massive stroke at the age of 50 leaving him partially paralyzed and unable to speak.  He fought to live and then spent the next year fighting to regain function and mobility.  Unable to work from disability, we closed our business, the sole source of our income, and I become his 24/7 caregiver.  

In 2022, James got very sick within a matter of weeks and was diagnosed with cholangiocarcinoma or bile duct cancer, considered not only rare but aggressive, chemo resistant and therefore incurable.  He underwent a horrible surgery called a Whipple procedure and was told they removed everything early,  he was cured.  

Two months later a pet scan revealed the cancer had metastasized to his liver.  He was changed to stage 4 and offered palliative care as he was not a candidate for liver resection or transplant.  

We refused to give up or accept the 7 month survival prognosis he was given.  Two and a half years later, James is still fighting.  From the onset of this diagnosis, we told oncology we would only accept a cure - our goal was to kill this monster.  

October 2023, the FDA approved use of histotripsy for liver lesions.  This remarkable procedure uses ultrasound to violently shake and obliterate cancer lesions.  The body then flushes the immediately killed tumor through the kidneys.  The liver is not damaged and the integrity of liver tissue is maintained, allowing it to regrow into the empty cavity.  The tumor is killed on contact so there's no risk of metastasis.  There is no limit to how many times you can do this procedure.  

This is the first treatment that has successfully killed cholangiocarcinoma tumors in the liver which is the ONLY place my husband has cancer residing in his body! 

 Cholangiocarcinoma is considered incurable because the shell of the cancer cell is impervious so the body's immune system cannot read the inner DNA and learn how to fight/kill it.  By shattering the tumor with histotripsy, the DNA is finally exposed and the body has a chance to develop immunity to it!  An actual chance for a cure!  

Few clinics offer this technology - insurance denied coverage.  First, for the Category 3 code deeming histotripsy as new and emerging technology.  Insurance twisted the interpretation to mean "experimental" and "not medically necessary".  Upon appeal, we were informed that James' state disability waiver is funded by a Medicaid expansion and Medicaid prohibits the coverage of any Category 3 procedure.  Until the FDA changes the procedure code, we have no appeals option left and insurance will continue to deny coverage.  Not that it means much as privately funded insurance patients are receiving across the board "experimental and not medically necessary" denials also.

Not to be deterred, we found a hospital in California that has been doing these procedures for nearly 18 months and have done over 300 in the past year alone!  They understand this is the last hope for many people and are compassionate, urgent and aggressive.  

We are in an impossible situation so we started this fundraising campaign to pay for this life saving, life altering, life giving treatment while it is still within the realm of a curative possibility.  

With the support of Help Me Bounce and hundreds of donors, we were able to raise the $50K needed for his first histotripsy procedure and May 4th James had the procedure.  In 4 hours' time, 1/3 of his cancer was completely and permanently killed!!!  He took Tylenol and flew home the following day.   But our battle doesn't end here.

The reason this specific clinic is pertinent to James' outcome is that they are the only facility in the entire United States allowed to treat pancreatic lesions as part of a closed trial.  James' largest lesion presses the liver into the pancreas.  He was the fourth person in the world to receive histotripsy on this type of lesion.

However, this lesion is large and it could not be completely killed in one pass.  The kidneys can only filter out so much debris without harm or failure.  James requires at least one more histotripsy treatment, probably two.  

Hospitals are realizing the value of these treatments and the high demand from patients globally.  Their original offer of a 40% discount on subsequent procedures has increased to $35K each procedure.  Without insurance coverage, we have no option but to raise more money.  

They suck.  So does cancer.  We can't do anything about either of these factors but we can keep fighting.  A cure is within our sight.  Two more treatments will get us there. 

We've already paid out $50K from our raised donations to the hospital for the May procedure.  We have $25K remaining which is $10K short of the needed amount for a second procedure next month and we still have to raise another $35K for a third procedure this fall.

Can you help us to raise the remaining funds that we are lacking? 45, 000 generous donors giving just $1 provides the funds for his two final treatments!  We are rushing to raise this and pay the hospital before they raise the rates again. 

Even if you can't donate, please share our situation with everyone you know.  Someone, somewhere is able to help.  We need you to connect us with those individuals.  

Thank you for reading this far.  Thank you for caring and sharing.  Many blessings to all of you!  #NEGU