Jack Jack's Journey

Our sweet Jack Jack has been diagnosed with cancer, here is our story:

My name is Molly and I am the mother to two beautiful boys, Jack Jack and Finley.

My husband, Tyler, and I live in Wisconsin with our two boys and two dogs, Josie and Sparky.

Tyler and I tried for a year to get pregnant with Jack Jack, he is truly our dream come true. Then in late April of this year, we completed our family and welcomed our second baby boy, Finley, who spent his first two weeks of life in the NICU.

In early February, I noticed a small bump in Jack Jack’s neck. What started as a visit to the ENT turned into imaging, biopsies, and ultimately — a devastating diagnosis. Jack Jack, just two years old, has cancer.

Jack Jack has been diagnosed with an extremely rare and aggressive cancer called TFE3-rearranged PEComa — a type of soft tissue tumor that affects fewer than a handful of children in the world. His specific genetic fusion (ZC3H4::TFE3) is so rare that it has only been documented in one other case.

On June 19th, Jack Jack underwent surgery to remove the 4cm tumor and a few lymph nodes on his right side with the intention of being sent out for biopsy. On June 24th, we received the news that Jack’s lymph nodes were involved – in other words, the cancer has become regionally metastatic.

Because this cancer is so unusual, there are no established treatment guidelines, and most therapies that work for common cancers don’t apply here. Surgery was performed to remove the tumor and nearby lymph nodes, but his doctors are still trying to determine the best next steps — and they’ve already ruled out one type of targeted therapy because of how Jack Jack’s tumor behaves at the molecular level.

This cancer is resistant to many standard treatments like chemotherapy, radiation, and other targeted treatments. Once this cancer spreads throughout the body, there is no cure, only control. In addition, very little research exists to guide care for a child as young as Jack Jack, as this cancer has only been seen in children a handful of times. We are working closely with pediatric oncologists and surgeons, and we’re also seeking second opinions from national experts in rare sarcomas around the country to give Jack Jack the best possible chance.

Tyler is a foreman and journeyman electrician with IBEW Local #890, but he’s had to miss significant work to attend appointments and support me while I recover physically and mentally postpartum. I’m a stay-at-home mom and work part-time with child protective services but have not been able to work due to all of the appointments. We’re now coordinating with specialists across the country and pursuing second opinions in hopes of giving Jack Jack the absolute best chance.

This fund will help us cover:

• Travel expenses for out-of-state treatment

• Lost wages from Tyler’s time off

• Medical bills, copays, and medications not covered by insurance

• Childcare, meals, and household needs while we focus on Jack Jack’s recovery

One of the most difficult aspects of this whole situation is that Jack Jack doesn’t understand that he is sick. He does not understand what is going on, or the tough road that is ahead. In addition, Jack Jack has a speech delay and is unable to communicate pain, discomfort, or fear.

We are devastated, but we are fighting. Jack Jack is the sweetest, funniest little boy and throughout all of this, he has been strong, brave, and full of light.

If you are able to give — whether financially, through prayer, or by sharing our story — we are endlessly grateful. Thank you for walking this journey with us.

With love,

Molly, Tyler, Jack Jack, Finley, Josie & Sparky