The Mercaldo Family
Our Story
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
Family Updates
James had his bone flap removed in August due to an infectious biofilm on it. We were so disappointed that this step was needed. In addition, he had all of the remaining catheter material removed from his back and abdomen. Absolutely nothing was left in place. THIS seems to have been our miracle - Infectious Disease thinks, based on his history, that the catheters were retaining bacteria and sending it through the spinal canal to his brain.
Now that everything was removed, we did I.V. antibiotics three times a day for three hours at a time the past six weeks. What an ordeal BUT wow!.....James is a new person. He is so much more alert and interacting, something we haven't seen from him in years! I had forgotton how much James had recovered from his stroke until now. He is so much like his old self and it has brought all of us so much joy.
We return to UVA next week for imaging to see if the infection is completely cleared in his abdomen, back and head. If so, neuro will take measurements of his head and order a custom bone flap which will take about two weeks. At that point, we will have it surgically implanted and, fingers crossed, we will never have to think about this again!
With all of the steroids given after surgery and each chemo infusions, James has developed a sudden onset of cataracts in both eyes. He isn't seeing that well so we haven't been able to start therapy yet. He can't see our faces, flashcards or even walk safely. That's a disappointment as the cataract removal cannot be done until his bone flap is implanted. We're looking at December, maybe January until James is completely restored.
We have suspended chemo since July 9th to give James' body the ability to recover. He is slightly anemic and we're hoping he will improve during this break from treatment. That would give him so much more energy. When he resumes treatment, we will do a pet scan to see where he is with the liver lesions and whether we will resume chemo or go straight to histotripsy.
Two weeks ago, we had a hearing with the state of Virginia to appeal insurance's denial of histotripsy. They are refusing to cover it despite their own policy having a clause that allows coverage. December we will receive the hearing officer's decision. I'm debating if I should appeal a negative decision to the Circuit Court or sue the insurance company in civil court.
We could use prayer for wisdom in these decisions, prayer for continued healing of James' cancer and prayer for his continued remission from infection. We are praying for the hearing officer to sway his decision in our favor and force insurance to cover future histotripsy procedures. We are in need of prayer ourselves. This entire ordeal has wiped us out and we are emotionally, physically and mentally spent. We still have so much to do and could use prayers for strength.
Thank you all for your love, prayer and support. We would be lost without you!
James started leaking at his incision site. He has been admitted to UVA only two days after leaving. We are waiting for an available OR for emergency surgery.
This greatly affects our procedure with Dr Burns. I’m devastated that James cannot have histotripsy this weekend.
The hospital has the donated money we’ve been able to raise so we can easily reschedule this procedure as soon as this current situation is resolved.
I don’t understand what God’s plans are for James but I still trust Him. Please pray for the surgeons working on James- for skill and wisdom, for answers and complete healing.
WE ARE HOME! And we're getting back to the business at hand.
James was discharged yesterday and we crawled our way back home from UVA. What a long, grueling 13 days.
He is resting well and I'm busy making follow appointments and figuring out how to get his port changed every week. Looks like a lot of driving to Charlottesville for the next six weeks.
WE ARE STILL PLANING TO LEAVE THIS FRIDAY the 29th for the histotripsy procedure Saturday.
I am holding out hope that we can raise the remaining $9k balance.
The balance has to be paid in full to the hospital prior to his admission on Saturday, August 30th.
We can have Help Me Bounce guarantee we have the money and send the check no later than Thursday which would allow us to continue with the procedure.
If we don't raise the remaining $9k, we will be forced to cancel the procedure. I don't have any more credit on my cards; I used the last of it to buy plane tickets to California.
Canceling this procedure is crushing because that means more chemo, more infections, less of the successful outcome we are so close to achieving.
Histotripsy lessens the liver's tumor burden. It has an abscopal effect which we've personally seen with James - something only recently viewed. The other untreated lesions are still shrinking despite missing 6 weeks of chemo from these hospital visits!
It's clear that histotripsy is less invasive and safer than chemo or surgery and it's working - it's actually killing this cancer. I really want to treat the last bit this weekend and let James stop chemo and beat this cancer.
Please, can you forward this to all you know and ask them to do the same? We are really coming down to the line on this fundraising effort and so much depends on it.
Thank you for praying for us while we were in the hospital and for continuing to pray for James to get well. We are so grateful.