Asher Michael Johnston was born on June 18, 2021. Perceived birth trauma to his left eye orbit quickly landed Asher in the emergency room. On July 4th, at just 16 days old, Asher was diagnosed with stage 1 Alveolar Rhabdomyosarcoma, a rare sarcoma that develops in the muscles and can cause pain and swelling. He started on chemotherapy immediately.
On October 15th, just after landing in Boston for radiation treatment, his family was given the devastating news that metastasis had occurred to Asher’s nervous system and there were no viable options with positive outcomes available. The only treatment to consider was a 20-year-old chemotherapy regimen employing drugs that are used in full-grown adults.
Asher continued this treatment for seven more weeks without success. On December 9, 2021, he grew his angel wings and went home to Heaven.
About 350 kids are diagnosed with this type of sarcoma each year. Depending on the location of the tumors, common treatment options might include: chemotherapy, followed by surgery; Intensity-modulated radiation therapy (IMRT), a precise form of radiation therapy that aims beams of different intensities at the tumor from multiple angles to kill cancer cells; and for children experiencing rhabdomyosarcoma in the eye or brain, Proton therapy. Unfortunately, none of these options were viable for Asher.
Clinical trials are exploring potentially more effective therapies for rhabdomyosarcoma. Some clinical trials are evaluating new drugs. Others are assessing existing drugs and drug combinations used in adults with cancer that may be useful in young people with rhabdomyosarcoma.