In May of 2019, 12-year-old Madison (Maddie) started experiencing unrelenting stomach pain that lasted for months. In October, she was incorrectly diagnosed with Mononucleosis. When her health continued to suffer, the doctors finally ordered a scan and discovered tumors on her liver. By this time, Maddie was already at stage 4 and it took nearly two months to determine the type of cancer she had, which was not a “good one.” Acinar cell carcinomas are highly aggressive neoplasms, with a median survival for patients with metastatic disease of 14 months, and an overall 5-year survival rate of less than 10 percent. The other painful news was that ACC is extremely rare in children, with only 25 known cases in the literature.
In March of 2020, right before the start of the pandemic, she underwent surgery to remove her tumors. and started aggressive chemotherapy to keep the tumors from growing back. For the next 8 months she stayed cancer free, but in that time, she developed Type 1 diabetes and a conversion disorder that caused tremors and seizures nearly every waking moment.
In August 2020, Maddie rang the bell, but it didn’t mean that she would be able to go home. She had lost the ability to walk and still needed a lot of medical care. She did recover from the seizures and was able to learn to walk again (you would never know her struggles seeing her today).
By November though, she had relapsed, and was given just 6 months to live. They enrolled Maddie in a clinical trial since the treatment options were nonexistent for a child with this type of cancer. She also received radiation to fight back the tumors. Yet they continued to grow, and in April of 2021 Maddie’s mom Princess was told there was nothing more they could do and that her daughter may not survive another week.
Princess fought back. She could not accept this fate for her daughter. She transferred Maddie to a different hospital and continued with an off-label protocol and chemotherapy. By May, Maddie miraculously had no evidence of disease! In December of 2021, she finished chemotherapy and rang the bell again! It is now 1.5 years later and she continues to have clear scans.
Maddie truly is a phenomenon, and we recognized that as soon as we met her in 2021. It was the pandemic, and at that time we were giving out family grants and offering individual family trips to Maine. After hearing Maddie’s story, we offered them both. And had the joy of meeting this incredible mom and daughter duo. We continued to stay in touch, and this year, we invited them back to a full retreat. Even though they live in Ohio, Princess will go to the ends of the earth for her daughter, and so they hopped in the car to come back to Maine.
You never know if teens will enjoy our retreats. Most take a while to warm up to the idea of connecting with new friends of all ages that have experienced cancer as a patient or sibling. Not Maddie though (who is now 16)! This girl’s smile beamed as soon as she arrived. She was the oldest of the group, yet, she got right in there with the younger kids to throw water balloons, paddle a kayak, ride a horse, hold a snake, or show off her incredible acrobatic skills. Maddie is a marvel–it’s unquestionable.
This is what Maddie had to say after our retreat, “Going into the retreat I was somewhat nervous because I had never been on this type of away trip/ retreat before, and so I was nervous to see what was to come. Safe to say, I had one of the best times of my life. By the end of the retreat, I had made some amazing memories and friendships, that will probably last me a lifetime, including my first-ever trip kayaking on one retreat, SUP boarding, my first time going to the circus, and holding a snake around my neck. The majority of these things I wouldn’t do “willingly” but given the circumstances and being able to connect with other kids like me, I decided to get out of my comfort zone and I definitely did NOT regret it. During the end of a retreat, at the end of July, I had a heartfelt moment with all of the families, and the amount of comfort and love that I had been gifted was definitely a moment to remember. So long story short, going to a Rett’s Roost retreat was honestly one of the greatest moments I’ve ever experienced in my cancer journey.”
Maddie’s mom Princess had an equally positive experience, “At the end of the retreat, you’re asked to say something you are thankful for. I was thankful for being able to find a glimpse of my true self again. To know, even though my kid has pancreatic cancer there are other moms out there that will forever have my back and understand my struggle. Yes, everyday we beat the odds, but that takes a toll on you. Of course I cried like a baby when I spoke. Madison ran up to me and hugged me. She said, “I’m here for you mom. I’ve never seen you cry like that.” I said, “you aren’t suppose to.” She said, “but then I would know you are human.
“Crying didn’t help me, but I think it helped her see something new in me. But gaining a new support system definitely helped me… Having a child diagnosed with cancer changes you, you lose who you are. Regardless of what anyone says, part of you dies in that moment. But somehow if you meet the right person or people; they can help bring some life back into you. Put a little sparkle back in your eye. Something about a mother’s tears gives you strength. Something about a mother actually understanding and not just giving you the “oh I’ll pray for you” phrase but actually listening and giving a hug that only a mother that’s been in my shoes could give, fixed me, just enough to be able to keep going.”
