Help Rox fight her extremely rare cancer!
My dear friend Rox (Roxanne Gehl) of 15 years, was diagnosed with an extremely rare cancer, Uterine Leiomyosarcoma, this past March after having a full hysterotomy due to extremely painful fibroids in her uterus. One of the fibroids came back from pathology as cancer. This extremely rare form of cancer, is estimated to occur in 6 out of every 1,000,000 women in the U.S. each year.
This very rare and aggressive cancer (so aggressive that the drug goes after your heart organ), is why Rox is doing adjuvant in-patient chemotherapy for 4 rounds at Mayo (she just completed her 3rd round; each round being 4 consecutive days in the hospital). Adjuvant chemotherapy is administered after surgery to kill any remaining cancer cells with the goal of reducing the chances of recurrence.
The latter part of June, Rox was scheduled to do her 4th round of chemotherapy but currently has been cancelled as her port is now defective and also, they discovered she now has a blood clot in the right atrium of her heart, which was caused by the port. Doctors tried to determine how to remove the port safely but decided to leave it alone as they thought removing it would cause the blood clot to move. At that time, they also discovered she has a PAVM in her lung. PAVM (also rare like her cancer), is an unusual connection between arteries and veins. They needed to block this connection before they could treat the blood clot in her heart or it could pass through to her brain and cause a stroke. This surgery entails putting metal coils in her lung to block the connection. Rox had this surgery and the procedure was successful. Her cardiologist has recommended to leave the blood clot in her heart alone and treat with blood thinners (2 daily stomach injections and meds), currently happening this 4th of July weekend. The doctors anticipated the blood clot to be dissolved within 5 days, but unfortunately 7 days later, it is still the same size. Rox is continuing with the injections until the next steps.
On July 8th Rox had a Tanscranial Doppler Procedure which is a brain ultrasound that looks at her heart and lungs in a different manner. The doctors discovered from a prior echocardiogram that she has a hole in her heart, hence the TDP was ordered and completed. She meets with her cardiologist next week.
On July 14th Rox was made aware that she has a Patent Foramen Ovale (PFO) which is a small opening between the two upper chambers of the heart, the right and left atriums. The cardiologist conveys it carries about the same risk as the PAVM. The plan is to continue the stomach injections, and dependent on her lab numbers, hopefully remove the defective port next week and in two months have another CT Angio to check the status of the clot. If the clot has not shrunk satisfactorily, they will consider an embolectomy (process like they did for the PAVM) to remove the clot.
On July 21st, Rox’s defective port was successfully removed!
On July 27th Rox’s numbers increased to the level needed so she no longer needs to do the stomach injections, but to continue monitoring levels, needs to still gets labs twice a week at Mayo.
On August 9th Rox had a full body scan to see if the cancer has returned. It has not! Rox will need to get another scan in three months.
Next steps she will need to 1) get a brain MRI 2) have an additional test which looks for AVM in other places in her body 3) have another echocardiogram, and 4) more than likely Cardiology will perform surgery to remove the blood clot and patch the hole in her heart.
The chemo has not been easy on her, but she keeps getting up and fighting. Rox is one of the strongest people I know and the most selfless. If you ever need anything, she would be there even if it were her last. She was always donating, volunteering and trying to help people, now it's her turn to be helped.
Cancer is a horrible disease and creates a huge financial toll on the individual. Whenever Rox does receive a sign-off from her oncologist, she will need to get full body scans every 3 months for the next 2 years. This diagnosis will be a lifetime battle for her and even with insurance, will have unexpected and uncovered expenses for the rest of her life. I created this GoFundMe to try and ease some of the financial burden on her so she can focus on beating this very rare and aggressive cancer.
Let's give back and support Rox as she can't be strong all the time. She is very vulnerable, tired and some days feels defeated, but continues to fight. Anything you can donate, no matter how small, can help and is very appreciated. Let's surround her with love, hope and support. Nobody needs to fight cancer alone!
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