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Shane’s Alveolar Rhabdomyosarcoma Story

Baby Shane's alveolar rhabdomyosarcoma story

When your child is diagnosed with cancer, it can crush your world. Michele, mother of Shane, had to hear the words come out of her doctor’s mouth that Shane had cancer. She shared Shane’s Alveolar Rhabdomyosarcoma story with us, starting with the diagnosis, “Shane’s diagnosis took four weeks to receive. When we think about the hardest days of our lives, we think of that month. We went from general surgery to urology to infectious disease and finally, oncology. When we landed on the oncology floor, we were still hopeful. It wasn’t until the afternoon after he had his MRI when our fears became a reality. The phone rang and it was the oncologist on the line, saying “Shane has a large tumor spanning from his groin area to his rectum.” He was on speakerphone. My husband handled the call, while I melted to the floor, gasping for air. Three days later we received his official diagnosis. He had a 1% chance of survival.”

After receiving a diagnosis like that, cancer isn’t the only battle you’re facing. With it comes plenty of hardships and challenges to overcome, and Michele shared some of her family’s greatest struggles, “Our greatest hardships throughout our battle was maintaining normalcy for our family. Shane had two older siblings and I would have to be at the hospital every week, sometimes overnight too. During certain times in Shane’s treatment his immune system was vulnerable, which made get-togethers with family and friends difficult.”

To combat those hardships, Michele and her family found support. She opened up about how they were able to get through these hardships together, “Our family and friends went above and beyond to assist us throughout our journey. Whether it was a simple text message or helping with his older siblings. We could not have done this without such a strong support network.”

As they fought this battle as a family, Michele shared a quote for others who have children, or any other loved one, facing the battle of cancer. “Shane lived on his terms and went out on his terms. To quote Stuart Scott, the ESPN anchor who passed away from cancer, “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.” These simple words have been so impactful to our family and symbolized Shane’s journey through life. Shane may have lost the fight, but he won the battle. He beat cancer. He lived every day to the fullest. He taught us to cherish every moment we have. As a family, we beat cancer. Many times cancer can rip through a family, tearing it apart. Cancer brought our family closer together. We are so thankful for the love and support we received from family and friends over the course of this journey. It has and will continue to help move us forward,” she shared.

Shane was a fighter, and Michele shared a cute story to show his fight. “A few days before Shane passed, we were at his big brother Chase’s soccer game. Shane’s body was withering away and the words he spoke turned into grunts, but the fight in his eyes was visible. Chase got hurt and came out of the game. Shane, who was in Michele’s arms, wiggled out and walked over Chase, as Michele followed behind. Shane patted Chase on the shoulder, but he wasn’t comforting him…no, Shane patted him, and pointed out to the field with a grunt, telling him, man-up big brother and get back out on the field. It was classic Shane.”

People love to help, and allowing them to when you are in an extremely difficult time can be a vital support to lean on. With a child battling cancer, help with anything can be amazing, and Michele shared a quick story on how someone helped their family during this difficult time, “The best thing was a foundation insisted on buying Christmas presents for our family. When you’re in a journey like this, it’s easy to not care about birthdays and holidays. They seem so unimportant. You are busy trying to maintain a house, juggle hospital visits, stays, chemo, etc. Reflecting back, we are so glad we agreed to it, because it helped us out tremulously and we are forever grateful for their assistance.”

If you would like to learn more about Shane’s alveolar rhabdomyosarcoma story, you can check out their GiveForward page here.

They are still raising money for research on alveolar rhabdomyosarcoma if you would like to donate to the fund. You can also visit their non-profit page Shane’s Future Days, which raises awareness about alveolar rhabdomyosarcoma, as well as funds for research and families who are battling alveolar rhabdomyosarcoma and other rare childhood cancers.

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