Donations for Kaori

My name is Sean Ellwood. I come from Waipukurau, New Zealand. This is my wife Kaori, and my son Juren. We live in Kyoto City, Japan.

I work for a pharmaceutical company close to Kyoto, Juren is currently in high school, and Kaori is a housewife.

In August 2015 Kaori was diagnosed with pseudomyxoma peritonei (PMP), a rare type of cancer that afflicts one person in every 100,000 to 1 million.

The cancer cells produce large amounts of mucin (a jelly-like substance). This mucin together with tumors builds up in the abdominal cavity. If left untreated, compression of organs eventually results in the death of the person afflicted.

We first realized Kaori had a problem when her stomach swelled up as you can see in the photo above. We didn’t know it at the time, but the mucin was pressing up against her lungs making her short of breath after walking only very short distances.

She initially saw a doctor at Mukaijima Hospital who, after an x-ray and blood tests, told her that she just needed to get some exercise (To be fair, this is a very rare and hard to diagnose cancer.). Kaori wasn’t happy with this diagnosis, and immediately went on the internet to look for something that matched her symptoms. The first thing that came up was the very cancer she was afflicted with. Looking back, I’m amazed that she was able to correctly diagnose herself when a doctor was unable to do so.

She then went to Tokushukai Medical Center (in Uji City) and was correctly diagnosed as having pseudomyxoma peritonei. Unfortunately, the doctor who saw her had only done two operations involving this cancer in the past, and was not confident that he could effectively treat her.

Kaori was then referred to the National Hospital Organization Kyoto Medical Center where this photo was taken just before an emergency operation. During her operation she had 15 kilograms of mucin and tumors removed, and she lost another 15 kilograms of fluids after the operation. If she had left it for another month she would have been dead.

She underwent a second abdominal operation in May 2018 due to a relapse. This operation involved removal of mucin and cancer cells, followed by heat and chemotherapy.

At present, her cancer marker level is gradually increasing again, and she is due to have another operation this year.

Kaori’s current treatment involves abdominal surgery to remove mucin and cancer cells, followed by heat and chemotherapy. This treatment is highly invasive and involves high levels of physical and psychological pain.

Repeated relapses require multiple operations, eventually weakening the patient and leading to death. We would like to avoid this treatment if possible.

Another option is treatment using Opdivo at a private clinic (Opdivo is a new monoclonal antibody treatment for cancer.). Kaori’s doctor (Dr. Yutaka Yonemura, Kusatsu General Hospital) has told us of one patient who was cured or responded positively after treatment with Opdivo. While this medication does have side effects, it appears to be significantly less traumatic than Kaori’s current treatment.

As treatment of pseudomyxoma peritonei using Opdivo is not covered by Japan’s national health scheme, all costs would have to be paid for by us. One treatment costs a minimum of approximately US$2,000. Treatment is repeated once every two weeks. We would like to try this treatment if possible.

As we are unable to cover the costs of treatment using Opdivo, we would like to ask for any donations you are willing to make. We are aiming to raise $48,000, which will cover treatment for 12 months.

What your donation may help to achieve:

-Raise awareness with respect to pseudomyxoma peritonei and other rare cancers.

-Have treatment for pseudomyxoma peritonei (and other rare cancers) using Opdivo covered by Japan’s national health insurance scheme, making it a much more accessible treatment option.

-Establish a new type of treatment for PMP that is substantially less invasive, and involves far less physical and psychological pain.

-Allow my wife to get to know her grandchildren before she dies.

-Allow a family to stay together a little bit longer.

Thank you for your help.

Sean Ellwood