Cherishing Time with Loved Ones

In 2018, Warren was going to have surgery. While preparing for his procedure, his laboratory work identified elevated liver enzymes. An Ivy League-educated gastroenterologist (GI) doctor had Warren undergo several exams, which included an endoscopy, an ultrasound that showed some nodules in his liver, a CT scan, and a biopsy. The results showed that Warren had mild cirrhosis. When Bonnie and Warren asked the GI doctor what surveillance is needed for cirrhosis, he downplayed it by claiming that there were no risk factors. Contrary to the GI doctor's claim, having a fatty liver, being an insulin-dependent diabetic, and having cirrhosis, even stage zero cirrhosis, are all risk factors for hepatocellular carcinoma (HCC).

In March 2019, Warren was officially diagnosed with HCC. When he started having some right upper quadrant pain for about three to four weeks, his primary care doctor sent him for an ultrasound. Along with mild cirrhosis, Warren now had significant portal vein thrombosis (PVT). His primary care doctor immediately contacted the same GI doctor who saw Warren the prior year. After some tests, Warren's AFP test results were normal, but an MRI showed a large tumor and satellite lesions. Then, Warren was sent for a biopsy. By a stroke of luck, Bonnie and Warren were able to identify a suitable physician to help with Warren's treatment on the day he was going in for his biopsy. They overheard the GI doctor mention the name of an interventional radiologist (IR) who successfully treated HCC. So, they asked about the IR, who coincidently happened to be there that day.

The IR was phenomenal and had a wealth of knowledge about HCC. He had liver issues himself when he was in medical school. Furthermore, he was sure Warren had HCC, even without seeing his biopsy results. He told Warren that he probably had a three to six-month prognosis, and it looked like it was stage four because of the PVT. The IR immediately contacted an oncologist and talked to him about putting Warren on Lenvima, a medication that treats patients with unresectable hepatocellular carcinoma (uHCC). Warren was also immediately scheduled for Y-90 radioembolization, a specialized radiation procedure. From early on in Warren's treatment plan, the IR and oncologist clarified that there was no cure. The palliative treatment was designed to improve Warren's quality of life and extend his life.

For nine months, Warren had a good response to Lenvima. The Y-90 radioembolization also shrank his tumor, which retracted in the portal vein. However, the treatment stopped working. Drawing from her experience as a nurse, Bonnie asked about genomic testing and immediately started researching. She listened to medical conferences, followed HCC experts, and asked Warren's healthcare team about any clinical trial studies or new medications she would come across. Warren's doctor ordered a clinical trial medication Bonnie found, but insurance turned it down. Throughout this time, Warren and Bonnie had a social worker they could talk to but were unaware of other patient assistance programs. Warren had scans every two to three months, which included an MRI of his abdomen and a CT of his chest. He also had laboratory tests every four to six weeks. Every time he had a scan, Warren and Bonnie also saw the IR.

During the last month of his life, Warren continued working as a consultant for his company. Warren and Bonnie's daughter got engaged at the end of April and planned to marry the following January. She suddenly decided, which Bonnie thinks was God's prompting, to get married that Memorial Day weekend. Warren and Bonnie attended their daughter's wedding, celebrated their granddaughter's first birthday, and even went on a family beach trip. They also attended the Father's Day Baseball game on June 20, only six days before Warren passed away.

On a Saturday morning, Warren woke up complaining of abdominal pain followed by an episode of diarrhea. He was rushed to the ER. Initial scans and lab work did not show anything concerning. Bonnie asked for a GI consult, and they included the on-call IR, who was planning to do a specialized scan. Suddenly, Warren's hemoglobin and hematocrit dropped significantly. They were in the process of giving him blood, but it didn't arrive soon enough. Warren passed away from an internal hemorrhage.

When they heard that Warren had died, his IR doctor and oncologist were shocked. They said that they saw a small blood clot and a compensatory vessel in the liver; both were very fragile. They believe the blocked vessel ruptured. For Bonnie and her family, this time in their lives was difficult. Her younger daughter was there in the emergency room with them. Her older daughter was away on her wedding anniversary trip. Bonnie feels it was God's gift that Warren was able to spend his last month with his family.