For April’s spotlight, we bring you Joan Gorowsky from Minneapolis. She is fighting BCOR sarcoma. As with many cancers in children, this particular one is named from a specific type of gene mutation. This gene is found on the X chromosome, and this subtype of sarcoma has only been identified since 2012. Prior to this, this subtype was grouped with Ewing’s sarcoma and as such treated the same. Over the last few years, this type of cancer has been given its own category. Given all this and its rarity, it easily makes parents feel alone in their struggle.

Joan was born healthy and happy on June 9th 2022. A week later as mom was giving her her daily baby massage, she notice a bump on Joni’s lower right back the size of a pea. Her mom alarm went off and immediately thought “cancer.” We went to our pediatrician, and she wrote it off as a birthmark. By 1 month, it was the size of a marble, by 2 months a golf ball, and at 4 Months it was baseball sized. That is when we finally got referred to pediatric dermatology. At month 5, we got in to see her, and Joni’s tumor was the size of a softball.

On November 18th, 2022 we heard the words no parents ever or want to hear. “Your daughter has cancer”. On November 28th, it was confirmed she has BCOR sarcoma, a super rare form of sarcoma (2 children are diagnosed yearly in the USA, TWO 🤯). What’s more strange is this is usually seen in adolescent boys and it’s usually in there pelvic bone, so Joni is a super anomaly.

We are signed up for the long haul, 6 rounds of chemo and surgery to remove the cancerous tumor. We have been through 3 rounds of chemo and the tumor is shrinking. It’s been the hardest fight of our lives with countless infections and all types of complications from the chemo. But, Joni’s outlook is good with an 80% 5 year survival.

We are frustrated with the lack of research or info on childhood cancer. And it feels like we are the only ones who have had this type of cancer for our baby girl. We’re tired but, will fight for her in every way possible.

Since Betsy, Joan’s mother, wrote to us, her chemotherapy rounds have been completed and her scans are clear. Joan has also celebrated her first birthday! We want to wish Joan a happy birthday as well as many more to come. We also want the Gorowsky’s to know and anyone else fighting in a similar situation that even if their particular subtype is very rare and you may never meet another with it, we all share a common goal of providing the best for our children and you are never truly “alone.”

The Gorowsky’s have a GoFundMe and a Caring Bridge if you want to follow along in their journey and provide support.