Myllena Low's Cancer Fight

Myllena and Damien were married at Stanford Hospital on May 14, 2022. They are excited to start their life together as husband and wife, but first need help getting Myllena the life-saving treatment she needs. If you can't donate, please share her story. 

 

In 2019, at just 21 years old, Myllena was diagnosed with Epithelioid Hemangioendothelioma (EHE). EHE is an incredibly rare cancer (1 in a million have this cancer). It is due to a genetic defect when the chromosomes break apart and aren't put back together correctly, causing the cells not to function appropriately. Onset is typically between the ages of 30-50 years old and is usually found in the liver, lungs and bone. Myllena has been fighting this rare cancer in her liver and lungs since she was 21. At the time of diagnosis, the tumor was malignant but can be aggressively systematic when aggravated. They had a choice, to treat it and potentially make it worse, or leave it, and it may never act up. 

In September 2021, there was no growth or change. 

In February 2022, Myllena's shoulder had started to bother her for a significant amount of time. She went back to the hospital, where they performed more scans. The new scans found the tumors on her liver were growing, and what was previously diagnosed as small harmless cysts on her lungs, were roughly 30 tumors. 

 

As a side note, Myllena's Doctor is known as one of the leading medical experts in the world when it comes to sarcomas- which is a great thing. It's amazing, and very fortunate.

 

UPDATE ON CURRENT TREATMENT: 

 

When Stanford diagnosed Myllena with EHE, the concerning tumors were found in the liver, and several small ones were identified in the lungs. The lungs were not as much of a concern for the doctor at this time because the liver was causing her symptoms. They wanted to try a particular therapy called liver embolization, where they inject liquid radiation directly into the liver. The benefit of this is that it targets the specific area needing treatment, as opposed to chemotherapy which provides treatment to the whole body and could cause unnecessary side effects. Prior to going into this appointment, we knew the radiation had to be postponed due to insurance or some payment issue that needed to get worked out with her insurance from Cultural Care, Aetna. (Such an American thing, all about money, even in healthcare. Embarrassing). 

 

Due to the delay, they started Chemotherapy because beginning at least one treatment, either one, was the most important thing. Myllena conquered the first round like a champion and was scheduled for another on 6/2/2022. As that day approached, the doctors seemed more optimistic about the liquid radiation treatment, so they indefinitely postponed the chemotherapy to schedule the embolization. When she was discharged, we were told someone would call us in 2-3 weeks to schedule. We learned that the delay was a result of Myllena's insurance. It only covered Emergency Room visits and did not cover any outpatient work. She can not be discharged and return for follow-up appointments/labs as needed. This is why she was kept so long the first time she exhibited minimal symptoms. It would be incredibly challenging to see her again if they discharged her. At this time she was able to get enrolled in Medicare (with some difficulty). When Damien and Myllena married, he could also add her to his insurance. As a result of the new insurance there were some delays in getting the treatment approved, but this should help eliminate some of the future delays and complications. 

 

When Myllena asked about the stage of her cancer, her doctor informed us that if any cancer resides in the liver, it is technically automatically classified as stage 4. She quickly brought the focus back to the liquid radiation and continuing treatment, as if to imply the stage is not going to be directly correlated to her confidence in the treatment or Myllena's progress. After a few days home, there is already a lot of progress to celebrate. This speaks to what her doctors are doing to treat her and makes it easier to go out and do things she likes to do to enjoy life. Finding a balance between the medical responsibilities and time for her to be herself is one of our main focuses right now. We are very optimistic, sometimes overwhelmed, but encouraged by the love and support of our family and friends.