As you may know, Stuart has a complex medical history going back years. In his childhood he was diagnosed with Ulcerative Colitis (UC) and in college with Primary Sclerosing Cholangitis (PSC). These are inflammatory bowel diseases involving the hepatobiliary system (the liver, bile ducts, and gallbladder) that he has been managing with medication, regular monitoring and surveillance via scans and endoscopic procedures. Cancer screening is especially important for patients with PSC as this diagnosis alone increases ones risk by almost double of developing a gastrointestinal cancer, primarily within the liver, bile ducts, and gallbladder.
In March 2014 a routine surveillance scan for his UC showed an irregular lesion on the wall of Stuart’s gallbladder, however a follow-up scan showed inactive UC.
But the lesion was cause for concern, so a surgical biopsy was performed in August 2014 to further investigate. The results of that biopsy: Stage 1 adenocarcinoma. Cancer.
Two months later in October 2014, Stuart had a surgical resection of his liver in which his gallbladder, bile ducts, and lymph nodes were removed and tested for any spread of cancer. Thankfully after much fear, stress and questions, the results of that major surgery showed negative margins for cancer which meant that they felt pretty confident that the cancer had not spread outside of the tumor that had been removed..
Since then, Stuart and I have bought a home, gotten married, and gone on adventures around the world- not to mention our most epic adventure yet: parenthood. We welcomed Sage, Lucy, and Brodie into our lives and have been on a wild, joyous ride since.
But throughout our joy, there has been an unrelenting fear that cancer may return.
After seven years of clean scans, in July 2021 Stuart’s routine surveillance showed new lesions in his liver. Although these were considered inflammatory in nature, Stuart’s doctors could not definitively rule out cancer and ordered a liver biopsy. Thankfully the biopsy results were negative for malignancy but showed non-necrotizing granulomatous inflammation in his liver.
The fear of the unknown and the ghost of cancer began to build in our minds.
A follow-up MRI in January 2022 showed more enhanced lesions, increasing in both size and number “consistent with metastatic disease.” Cancer?
A liver biopsy in February 2022 of the liver showed no evidence of cholangiocarcinoma or hepatocellular carcinoma, but showed an abundance of non-necrotizing granulomas. Not cancer?
A follow-up PET/CT scan in March 2022 showed “metastatic disease involving the lungs, cervical, thoracic and abdominal lymph nodes and both hepatic lobes as well as the spleen.” Cancer?
Given the conflicting results, a few weeks later Stuart underwent major abdominal surgery to biopsy and test in real-time the nature of the granulomas and definitively diagnose cancer. With great relief we were told it was NOT cancer – a positive result leading to an obvious question: what was going on?
Several months of tests and more tests later, all other diseases were ruled out. By process of elimination Stuart was diagnosed with Sarcoidosis - a rare, chronic disease of unknown cause that displays as widespread granulomas. The sarcoid granulomas grow as a result of increased immune system activity but the presence of sarcoid granulomas make it incredibly difficult to screen for cancer.
In 2022 and 2023, routine scans and bloodwork for Stuart’s sarcoidosis have repeatedly given us fears of the return of cancer. Blood tumor markers, liver enzyme levels, shadows of lesions on scans that are measured, measured again a few weeks later, and then measured again a few weeks after that - all of these results could either mean advancement in sarcoid granulomas, advanced liver failure, or cancer.
We know that Stuart’s history of cancer at age 31 and his diagnosis of PSC places him at an increased risk for developing cancer, again. These risk factors in combination with the difficulty that Sarcoidosis has imposed on the ability to confidently screen for cancer over the last several years has led Stuart’s multi-disciplinary team at Johns Hopkins to review Stuart’s case in detail and recommend a prophylactic liver transplant. Liver transplants come with their own set of risks, but we they believe this is the best next step to mitigate his PSC and improve his chances of preventing future cancer. This evaluation was a several months-long process conducted by a team of over a dozen physicians who agreed that this was the best next step for Stuart’s future.
Stuart is currently on the waiting list for a liver transplant, but patients often wait years for a deceased donor (a compatible organ from someone that has recently died), and by the time an organ is available it is possible that a recipient patient may be too sick to undergo surgery. Given Stuart’s age and current medical standing, he is “too healthy” to be given priority for an organ, but as you can see from his medical history cancer and time is no friend of ours. And so we are in search of a living donor to donate a portion of their liver to Stuart.
What is a living donor? A living donor is a person of tremendous empathy and willingness to undergo invasive surgery to give Stuart a percentage of their liver. It would require a person’s body, health, and time. The liver is the only organ in the human body that can regenerate and grow back in a few months, so with time a living donor will regenerate their liver to its normal, pre-donation size.
While we understand that such a surgery has its own risks and appreciate the difficulty of such a decision, we cannot be idle in our effort.
We acknowledge this is a huge ask of our family and friends, but I will do whatever it takes to fight for my husband, the father of my children.
How can you help? Please spread the word. We want to cast a wide net to find one person that is willing, able, and eligible to help Stuart. If you are interested or have any questions, please feel free to ask.
If you are interested or have any questions, please feel free to ask me, Lizette. At this time I ask you to refrain from reaching out to Stuart directly.
You can learn more about Johns Hopkins’ process for living donor liver transplants at: https://www.hopkinsmedicine.org/transplant/programs/liver/living-donor-liver-transplant/
We love you all and thank you for your compassion and support as we embark on this search.
With love on Stuart's behalf-
Lizette, Stuart's adoring wife
Sage, his son who loves trains
Lucy, his daughter who likes to dance
and Brodie, his growing baby boy
If you are considering being a living donor please use links below to contact Stuart Fox's Transplant Center. Begin by completing the donor questionnaire
Liver transplantation has been a successful treatment and standard of care for end-stage liver disease since the early 1980s.
Technical advancements in liver surgery, as well as the liver's tremendous ability to regenerate, have made living donor liver transplantation a life-saving reality.
There are currently 120,000 people waiting for a lifesaving organ transplant in the U.S. Of these, 15,000 await liver transplants.
Although more than 6,000 liver transplants were performed last year, over 1,700 patients died while waiting on the list.
Deceased donor livers are allocated to patients based on how sick they are, determined by their MELD score, where sicker patients receive priority.
Living donation offers patients the option of transplant before they get very sick--regardless of MELD score--significantly decreasing the time they wait for a liver.
Living donation not only saves the life of the recipient; it also frees up a liver for a patient on the waiting list who does not have that option.
The Model for End-Stage Liver Disease (MELD) and Pediatric End-Stage Liver Disease (PELD) are numerical, objective scales that allocate available livers to the sickest patients. Patients move up the list as their scores increase.
The first living donor liver transplant took place in 1988. Since then, living donors have continued giving the gift of life and making a difference.
When a recipient has a living donor, the wait time for transplant is shorter and the transplant can be scheduled in advanced when the recipient is in good health and when it is convenient for both the donor and the recipient.
Financial burdens shouldn’t prevent the gift of life. The National Living Donor Assistance Center (NLDAC) can offer financial support for living donor travel expenses.
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