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Butterfly Blog

A Letter from Colleen: Johnny and Maddie's Mom

Dear Love Bus,

They say cancer doesn’t discriminate, but I never thought it could happen to an infant. My son Johnny was just 6 months old when he was diagnosed with stage IV high risk neuroblastoma. Johnny had a tumor the size of a grapefruit in his abdomen and had to undergo intense chemo and radiation. A few months later, Johnny’s tiny body endured a 12-hour surgery to remove the tumor. 
My husband John and I took turns living at the hospital with him for a year. I wasn’t allowed to hold him, so I would climb into the crib so we could snuggle. Our older daughter Maddie really struggled with the upheaval and anxiety surrounding her baby brother’s sickness. When Johnny finally came home, he was still in treatment, which caused debilitating after effects. Johnny couldn’t talk, and had trouble walking and eating. I discovered Love Bus right around that time, and thanks to your generous support, Johnny received tumbling classes and therapeutic horseback riding lessons which helped strengthen his core and improve his flexibility. He adores animals and absolutely loves horses. The excitement of interacting with horses also helped inspire him to speak!

Last year we had to keep Johnny isolated at home after a bone marrow transplant during the COVID-19 pandemic. John works as a firefighter and had to leave his job to avoid getting Johnny sick. We literally had no income and couldn’t pay the mortgage or pay for food or gas. 
Because of your steadfast commitment, Lucy’s Love Bus was able to help us with these large expenses. We were so blessed to have your support, it was a real lifesaver for all of us!

Johnny has been in active treatment for five years now and has had three relapses- the most recent relapse just occurred in September, and we are now back in the trenches, fighting with everything we’ve got for our little boy. Love Bus recognizes that childhood cancer impacts the whole family, and Maddie is so happy and grateful to be included in all of their programs. She knows that at Love Bus, her experience as a sibling is recognized and understood, and she feels just as loved and important as her brother. I see her confidence bloom when we get to participate in group activities with Love Bus- it’s like Maddie is with her people, and doesn’t have to explain her situation or compete with her brother for the love and attention she needs and deserves. 

This year, the kids and I took part in a Barn Babies pet therapy session, and the kids were thrilled to go horseback riding through the Love Bus Cowboy Camp program at Ironstone Farm. We’ve been so scared for our little boy since his recent relapse, but we have no choice but to go through treatment again, keeping our focus on Johnny’s comfort and quality of life. 
Thanks to you, we know that the entire Love Bus family will stay right by our side, offering love and support to each of us. We are so deeply grateful for your commitment that has helped Johnny throughout his childhood! We hope that you can keep giving to Lucy’s Love Bus so they can continue to embrace families like ours for many years to come! 

Thank you for being here with us, every step of the way. 

With love, thanks, and warm wishes, 

Johnny and Maddie’s mom

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