After experiencing some odd but seemingly harmless symptoms over the course of a few months, a trip to the doctor led to abnormal blood work, which led to an ultrasound, which led to an MRI, which led to a “mass” being discovered, which led to a 2-week stay at the hospital with extreme hypertension, more scans and more questions being raised than answers being provided. Doctors were scrambling to figure out exactly what they were dealing with.
Finally, after getting her blood pressure under control, Alexis had major surgery on April 11th, 2017 to remove the grapefruit-sized tumor, adrenal gland, kidney and spleen. As if this wasn't enough, the pathology report came back with a diagnosis of a very rare and aggressive form of cancer called Adrenocortical carcinoma (ACC). Never in a million years did we imagine hearing the dreaded “C” word. Cancer. Especially one as rare and as aggressive as this one -- ACC occurs only in 1-2 people per million!
But the tumor was taken out so we're in the clear, right...? WRONG.
A follow-up scan about a month after surgery revealed more bad news -- the cancer had spread to the liver. More doctors’ appointments ensued. Expert opinions were sought out as we researched and read as much as we could about ACC and its rare and peculiar nature. We’ve traveled and seen experts at Memorial Sloan Kettering, Columbia Presbyterian, Mount Sinai and the University of Michigan to name a few. The rarity of this cancer means that many physicians are not familiar with it and therefore are unsure of how to treat it. With that being said, we have surrounded ourselves with a team of phenomenal doctors and leading ACC experts, including Dr. Fojo at Columbia Presbyterian and Dr. Hammer at the U of M.
It was decided that IV chemotherapy was the best treatment plan and Alexis began undergoing chemo treatments on May 22nd, 2017, with 9 rounds complete so far. An oral chemo drug called Mitotane was also added to the regimen. Another surgery (this one laparoscopic) to remove a bowel obstruction was performed on September 25th, 2017. Relatively speaking this was just a "small" bump in the road (SMH). And so… the battle continues. The 10th and final round of chemotherapy is set to begin on February 12th. We try and think of this as taking the fight into overtime to knock this beast OUT once and for good! Follow-up scans in March will determine the next course of action.
Alexis is Wonder Woman -- a warrior, a trooper and the very definition of strength and endurance. Needless to say, this has been an extremely long and difficult road. Battling stage IV cancer is one thing; doing it as a mommy of a 3 and 6 year old is another. We have connected with and met other ACC Warriors and this has made the journey more tolerable, you don't feel so alone. Friends and family have been just remarkable throughout this journey and we don't know where we'd be without their help and support. No one fights alone. We THANK YOU all!
For more info on ACC, visit https://www.mcancer.org/adrenal-cancer/learn-about-adrenal-cancer#adrenal-cancer
The best way to support the fight against ACC is by donating to ACC C.U.R.E. (with all funds going to Dr. Hammer's research at the University of Michigan).