Support Mariah's Battle Against Rare Cancer

Hello, In May 2023 my 28 year old Daughter Mariah underwent “routine surgery” to remove a golf ball size tumor from her back which was believed to be a lipoma. Test later revealed that the tumor was a very rare form of Cancer known as (ASPS) Alveolar Soft Part Sarcoma. By the time the cancer was diagnosed, it had spread thru-out both lungs (stage 4) Doctors in New Mexico said less than 80 people a year in the world are diagnosed with ASPS. ASPS primarily attack kids and young adults. Chemotherapy treatments has no effect on this Cancer and chemo is not an option. This type of cancer is very rare. They told us they have never treated this type of cancer in New Mexico and because of its rarity there are not many patients to study and not a lot of money going into this research because the more common cancers usually get the funds. We were told the treatment prognosis was very poor. This news devastated our family as we had already lost our oldest daughter 9 years ago at the age of 25.

After much personal research we found that there was an oncologist Dr. (Anthony Conley) in Houston, Texas at MD Anderson who specializes in this type of Cancer. With no hesitation we packed up the car and drove to Houston for a “second opinion” appointment. Upon arriving at MD Anderson we were met by a team of doctors who were willing treat Mariah. The new #TeamMoe not only included family member but now includes Oncologists, Doctors, surgeons, radiologists, dietitians and many more who were eager to join the fight. After several days of tests, scans, pokes and appointments we were told that while there is no cure for this Cancer, there are a couple of trial medications being tested on ASPS patients. We were told they have seen positive results in some people, but the percentages were not good. For 50%of patients, the treatment shows no effect on the cancer. The remaining 50% of patients, some have severe side effects on the body that were too much to handle. We jumped at the possibility to try any treatment possible as it was our only hope. As part of the treatment plan we were told Mariah would need to travel to from New Mexico to Houston every three weeks for immunotherapy treatment’s. She would receive brain and full body scans every 6-8 weeks. As this cancer is known to travel to the brain.

The first CT scans in July 2023 showed what doctors described as an “Innumerable“ (too many to count) amount of tumors throughout both lungs. The tumors ranged in size, with the majority of them being small, some medium sized and a couple of larger tumors.

Well…. Fast forward a year. Mariah has completed a year of immunotherapy treatments every three weeks. Thru many prayers, positive beliefs and sheer determination Mariah’s body has accepted the treatments with minimal side effects. She still receives full boy CT scans every 6-8 weeks to monitor progress and meets with Dr. Conley and the rest of Mariah's care team. Doctors have been very impressed with how far she has come and how well her body has accepted the treatment.

Thru treatment, doctors now say many of the small tumors are no longer visible. Many of the medium tumors have stabilized and showing no signs of new growth. A few of the larger tumors have shown some growth over the year which is a little concerning to all.

I addition to her immunotherapy treatments every three weeks, Doctors now want to begin Radiation treatment to attack the larger tumors thru Radiation. “Stereotactic Body Radiation Therapy” also known as SBRT, is a cancer treatment that delivers extremely precise, very intense doses of radiation to cancer cells while minimizing damage to healthy tissue. SBRT involves the use of sophisticated image guidance that pinpoints the exact four-dimensional location of a tumor so that the radiation can be more precisely delivered to cancer cell. Several beams of radiation then attack the tumor at the same time from different angles.

This treatment will hopefully burn and kill this cancer cell. The radiation treatments will begin next week (June17th) at MD Anderson in Texas. Treatment will be given once per day for a week. If successful Doctors will schedule return visits throughout the year to address the other tumors. Doctors have said they can only treat one tumor at a time because of the complexity of the treatment and fear of damaging healthy tissue.

Since day one of being diagnosed, Mariah has accepted the challenge. Those who know her know she refuses to feel sorry for herself or use the diagnosis as an excuse. She has used it to motivate her and she is determined to pursue and live out the dreams she carries for this crazy thing we call life. Prior to being diagnosed Mariah had begun independent living. Though we wanted her to move back home she refused to allow the cancer to steal her independence. Mariah has continued to work her full time job with the New Mexico State where she has been employed for the past 8 years. Mariah carries health insurance thru the State of NM which has been a blessing. Unfortunately the cost of Cancer treatment comes with a heavy financial burden. One medication that she needs every three weeks comes at a price of $37,000 per treatment. This is just for one medication and does not include additional costs such as brain scans, MRI’s, lab fees and Doctors fees, etc. The costs of fighting cancer is beyond belief. Fortunately, insurance covers a good part of her medical bills. On the flip side, there is so much that insurance does not cover. This includes:

Annual Insurance Deductibles before insurance will kick in.

Office visit Co-pays.

Medication co-pays.

Airline tickets to and from Houston.

Hotel accommodation.

Food.

Uber fees….and everything associated with out of state travel.

Programs such as Angel Flights for air travel have been a true blessing. We use those flights several times when available. Angel Flights require three volunteer pilots because of distance and are only available under perfect weather conditions. Because of this we have spent much of the year flying Southwest Airlines as the drive is 16 hours one way.

Doctors are closely monitoring her progress and are surprised with how well she has responded to treatment both physically and emotionally. She defiantly is defying the odds. We are hopeful year 2 will help doctors come closer to finding a cure for her and all ASPS Cancer patients.

Unfortunately the cost of a year of treatment and travel has drained our life’s savings. My husband and I live on a fixed retirement income. Therefore, we have no choice but to swallow our pride and ask for help. All funds will be used to help pay medical expenses and will go directly into an account that helps pave the way in fighting this monster known as Cancer so she can concentrate on her health.

We want to thank you in advance and express our sincere appreciation for your love and support.

#TeamMoe #FaithOverFear, #StrongerTogether