Sharon

“It’s like you’re on a train and you don’t know where you’ll get off. You don’t know the train’s path, and you don’t know if it will stop anywhere along the way. You don’t know when it will move fast or slow or if you will ever get off this train. For some, the train ride is very long, but for others it's much shorter and bumpy.” - Sharon’s EHE specialist

Sharon Brener lived with EHE from 2012 until March 2nd, 2026. She had an infectious, sweet smile that would always make your day brighter. Her loving husband and life partner, Howard, shares their journey to help others affected by epithelioid hemangioendothelioma.

I remember those haunting words from Sharon’s EHE specialist when he first described epithelioid hemangioendothelioma to us. My wife’s new scary monster in her body. With a name we could hardly pronounce. It sent chills down our spines.

How did we get here? It all started in the spring of 2012 when Sharon was having a little pain in her abdomen. Her doctor wanted to rule out anything serious. A scan showed a lesion on her liver and multiple nodules in her lungs. We thought, “Could it really be the 'C' word?” Surely not, she only had a little discomfort. We were scared.

We saw a pulmonologist who said it could be cancer but wanted to do a PET scan and a liver and lung biopsy. I broke down. I had heard of so many people getting cancer in two organs with a grim outlook. Our son Jared was 12, and his Bar Mitzvah was coming up. Sharon was praying she would still be alive and healthy enough to celebrate it.

We received good news after the biopsy that it was not your typical cancer, but they didn’t know what it was. It took a few weeks until finally we heard that she had epithelioid hemangioendothelioma, EHE.

The pulmonologist referred Sharon to an oncologist who didn’t know much about EHE but was reassuring. She said there was no specific treatment - we needed to monitor the disease frequently for the time being. That experience left us relieved on the one hand, but completely worried that there are tumors in her body that cannot be removed and could grow or spread at any time. Feeling unsure, we decided to get a second opinion from a specialist at MD Anderson, who helped us better understand the monster we were dealing with.

More travel analogies: he said, “It’s like looking down at Earth from a plane. You only see the big houses but not the tiny ones.” EHE can hide a lot and is difficult to see in scans. Still, we left his office with hope that Sharon could live with indolent disease for a while.

Sharon was getting scanned every few months, and it heightened “scanxiety” for both of us. After a few scans with stable results, we started to feel less anxious. Sharon made our son’s Bar Mitzvah, but she was still very worried about the monster living in her body.

She did extensive online research, which was much more difficult at that time. There was a lot less information about the disease than exists today. We poured over other patients’ stories and took all the positives about people living longer times with stable disease. Sharon made a very good friend in the online support community who also had EHE. She would tell me that only people with the disease could really know the terrible fear they experience daily. Sharon and her friend confided in each other, compared symptoms, and reassured each other through their scans. Their relationship was incredibly helpful and lasted throughout her journey.

Sharon was exceptionally brave. I know how anxious and scared she was inside. To sum up Sharon in one word, it’s “selfless.” She never wanted anything except to please and love her family. She would do anything to protect our children and make sure they were taken care of. Given her situation – the disease was essentially dormant – we decided not to tell our kids or family about her disease until we absolutely had to, and hopefully never. Our kids were teenagers, and Sharon did not want them to carry worry and burden in their impressionable years.

Time went on. Scans went from 3-month intervals to 6 and then to 12 months. Each time it was good news. Tumors remained stable. I started to think this cancer was less of a worry than we thought. I stopped researching it – subconsciously, I only wanted to hear good things. But Sharon persisted. She poured over the EHE Foundation’s information, connected with experts, and attended their webinars. She found the close connections and resources so very valuable for such a rare disease. She shared her journey with others, she worked hard to get samples to the biobank and share her medical records. She saw firsthand the devastation this disease had on others, and tried whatever she could to help in the fight for a cure.

Then in December 2020, 8 years after her diagnosis, news would come that a tumor in her liver had grown significantly. Her doctor advised surgery to remove it, but Sharon had read that IRE was an effective treatment. Unfortunately, the doctor was in Miami, and with her lung vulnerability, we decided to stay local and do an ablation, which effectively took care of the tumor.

Since the disease seemed to be coming out of dormancy, Sharon wanted a local oncologist. This new doctor recommended continuing “wait and watch”. More scans showed small growth, but nothing alarming. Then in mid 2024 she had another tumor grow in her liver, so her doctor ablated again and prescribed sirolimus. She had a lot of side effects, including diabetes, high blood pressure, mouth sores, etc.

A few months later we took a family vacation, but I noticed Sharon was getting more fatigued and uncomfortable, and sometimes unable to keep up physically. After we got home, she developed intense abdominal pain and very painful constipation. She was admitted to the hospital but after several tests she was discharged – they couldn’t find anything. We assumed she had gotten a stomach virus during her travels. The abdominal pain and symptoms would come and go but she could still manage her daily life.

In April 2025, the pain got severe. She could not sleep at night and could not even lie down. We went back to the hospital, where they found that EHE had spread to her peritoneum. I was panic-stricken and distraught. Of course, in Sharon’s usual positive outlook, she assured me that her research showed that, with EHE, every case is different and that she would beat it.

She had to resign from teaching, which she loved and was such a good outlet for her. We saw her sarcoma specialist, and he also had a positive outlook. He prescribed a combination chemotherapy treatment to control her symptoms as well as her tumors. Her tumors remained steady, her cancer markers were down significantly, and she was soon symptom-free. We were excited and cautiously optimistic.

I knew the tumors were still there, and stopping chemotherapy meant they could continue to grow. Her doctor changed her to maintenance chemotherapy; I was worried and said we needed to have a plan B. Unfortunately, without traveling, there were no good options.

In November 2025, just a few weeks after the maintenance chemo started, her abdominal pain came back. Her scans didn’t show any new growth. Then in January 2026, she had intense abdominal pain, nausea, bloating, and constipation. After spending 10 days in hospital, the doctors were able to finally relieve her symptoms. Just before her appointment to restart chemo, her symptoms nose-dived. She couldn’t hold down food or liquid and had intense nausea and pain. She went back into the hospital.

Finally, we realized things were not looking good, but she was too weak to travel for other treatment. She was eventually offered the opportunity to go home with care to keep her comfortable. We had been full of hope and now were absolutely devastated. On Monday, March 2nd 2026, Sharon passed away surrounded by her family.

Sharon leaves a terrible void in the lives she touched. Her biggest gift was how abundantly she loved everyone and touched the hearts of so many. Her whole essence was love, care, empathy, and giving to others. She was the glue that held us all together. Everything she did was to make the kids and me happy and feel loved. This extended beyond her family to her friends, colleagues, her students and their parents, and even strangers. With an infectious smile that always made people’s day brighter, Sharon truly fulfilled her purpose as the most loving and dedicated teacher to kids whom she just adored.

I want to share Sharon’s experience and the lessons I learned to help others navigate this journey.

First, I learned that even though the disease may not be a problem today, it may be a big issue in the future. Being proactive in understanding all treatment options and alternatives is vital. Have Plan B and C ready to execute as soon as you see signs the disease is changing.

Advocate with your doctors as much as possible because sometimes they don’t know everything about this disease. Stay abreast of research and treatment developments through the EHE Foundation.

Use what you learn to continue to provide awareness, knowledge, and connections to those in this fight.

Finally, live your life every day and don’t take anything for granted. Don’t stop your life for this disease, and enjoy and savor all the good times as long as you can.

Our journey – Sharon’s ride on the EHE train is over, but in her memory, we will continue to support the EHE foundation, giving our time to keep this community and the mission strong, and giving funds to advance research with the hope that one day there will be a cure. That is what Sharon wanted.

Please reach out to me anytime if you need any advice. [insert contact info per Howard]

Consider a gift this Giving Tuesday, and right now, your gift is doubled by the EHE Foundation’s Board of Directors.