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Juno Wolff

  • Rhabdoid Tumor

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Juno was a happy and curious baby. He was only 4 months old when he passed away, but the way he acted developmentally (plus how big he was!) would have you thinking he was older. He was always smiling and laughing with his family. He was so loving and easy to comfort. He soaked in love and reflected it right back. He loved listening to his daddy and Pappy whistling, mummy singing, and loved to cuddle with his Meme and aunties. He enjoyed snuggling and reading books – his favorite was The Snowy Day. Juno would have "conversations" with his family, his little voice was so sweet and he often successfully mimicked sounds and words. His parents always associated Juno with outer space, and he is their "cosmic baby" so they feel very close to him at night out under the stars. The moon, stars, and rocket ships always remind them of their baby boy.

When Juno was around 6 weeks old, his parents began noticing some strange symptoms that continued to develop, such as a lump on his ribs, a weak right arm, and a drooping right eye. They took him to his pediatrician many times, only to be referred to various specialists who evaluated him, performed ultrasounds, and altogether weren't too concerned. His parents had a suspicion that the symptoms were related, and it wasn't until they rushed Juno to the ER for swelling in his chest and neck (at 9 weeks old) that a CT scan revealed several malignant masses throughout his body. Following a biopsy, he was diagnosed with malignant rhabdoid tumor (MRT), a very rare and aggressive cancer. Only around 20 kids a year are diagnosed with this terrible form of cancer.

Because MRT is so rare, there is not enough funding for research to establish a standard, effective treatment. So Juno received chemo for another soft tissue sarcoma called Ewing's sarcoma. He had two rounds of the VDC/IE protocol before he passed away.

Juno is his parents’ hero because despite the complexity and aggressiveness of his cancer battle, he smiled throughout it all. He only had a handful of bad days. “He was only a baby but endured so much more than any of us have ever endured in our lives,” said his mom, Faryn. He always managed to make his family laugh and smile throughout it all.” Juno's vast and enduring spirit gave so much strength to so many people - even though it was us who should have been giving strength to him! We are so blessed to have known the greatest joy of our lives through the beautiful blue eyes and laughter of our beloved son.”

For those who may also be facing a childhood cancer diagnosis, Faryn offers her advice and experience: “It is SO jarring to suddenly be thrown into the world of pediatric cancer. You will learn so much so quickly. Don't be afraid to ask questions. Keep asking questions until you understand everything. Advocate for your child - you know him better than anyone else.

“Write down everything! Keep a time log of every dose of medicine, procedure, vitals, every conversation you have with every professional. Ask every person who comes in the room their name and their specialty and write it down. The amount of people you meet will be confusing. You're suddenly being asked to rely on strangers to save your child's life. They are professionals, but what does your child need more than anything? Their parents’ love and presence. You are their familiarity as they too are suddenly thrust into a scary world. You are their source of stability and comfort.

“Soak in every second with your baby. I'm not saying don't go crying down in the bathroom. Do it because you need to process your emotions and you need to try to make time for yourself (it's difficult to pry away from our children in these circumstances, but a few minutes here and there is vital).

“Now is the time to rely on the kindness of loved ones and strangers alike. Don't be afraid to reach out and ask for help. You will find the most supportive and loving community with other cancer families.”

For Faryn, Alex’s Lemonade Stand Foundation (ALSF) has been a great source of support and community. “ALSF is the epitome of caring support and enduring advocacy,” she said. “Their outreach is incredible and their dedication to helping fund vital research brings me so much comfort as I join the mission myself in the memory of my beautiful son. I appreciate that ALSF gives you the option to donate towards a specific cancer type. I am hoping that by joining my fundraising efforts with ALSF, we can make substantial progress in rhabdoid tumor research.”

Information provided by Faryn W., Juno’s mom
Updated August 2023

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