When the excitement of becoming new parents and gaining the “big sister” title was still fresh, little Johnny’s family faced a heartbreaking reality. At just eight-months-old, Johnny was diagnosed with stage IV high-risk neuroblastoma.
Fast forward to today and five-year-old Johnny has endured numerous relapses and various types of treatment, including over 40 rounds of chemotherapy and radiation. Coined “Johnny Strong” by his family, he continues to face his diagnosis like a champ, despite the added complications of getting treatment during the COVID-19 pandemic.
Overcoming the financial side effects of cancer
When Johnny was first diagnosed, his mom, Colleen, didn’t hesitate to take on the role of full-time caregiver. Meanwhile, his dad, Big John, maintained his job as a firefighter to ensure they had at least one income to support their family of four.
Still, the loss of income coupled with increasing out-of-pocket expenses related to Johnny’s treatment left his family with significant financial worries. Thanks to our generous community, Family Reach was able to first support his family four years ago when the financial setbacks started to overwhelm them.
Since then, Johnny has been a steadfast inspiration for the Family Reach team and he, along with his parents and sister, are dear friends and advocates of our organization.
“The Morris family has served as a constant inspiration to the entire Family Reach community – including our staff, donors, Reach Athletes, and beyond,” said Nicole Ackerman, Senior Manager of Family Relations at Family Reach. “Everyone who has attended a Family Reach event where they’ve met Johnny has left feeling more connected to our mission and inspired by this special family.”
Facing the added pressure of COVID-19
It goes without saying that our hearts were heavy when we first reached out to families to better understand how COVID-19 was affecting their worlds.
“The unknown of coronavirus is a horrible feeling,” Colleen explained. “It’s scary for everyone but it’s even scarier for immunocompromised cancer kids.”
Nearly five years since Johnny’s diagnosis, his family are certainly experts on diligent hand washing and other health precautions. However, COVID-19 presents yet another long list of challenges for families like Johnny’s to overcome.
“With the COVID-19 situation, we have faced many life-altering changes,” Colleen said.
Most recently, Johnny’s family has been traveling from their home in Newton, Massachusetts to a hospital in New York City for his treatment. Already, self-quarantine and social distancing were precautions they couldn’t take. Then the bad news came: Johnny’s oncologist canceled his upcoming treatment because of a positive case of COVID-19 in the pediatric clinic.
Too dangerous for him to be in New York City, Johnny will receive oral chemotherapy from local care centers in the meantime. However, recent complications landed him in a Massachusetts emergency room shortly after his canceled treatment session. After a daunting few days, Johnny is, thankfully, stable for now.
Colleen reflected on these recent weeks: “This has been an extremely trying time as Johnny’s life safety is our first concern, but so many other things factor in.”
Among those other concerns is Big John’s decision to take a leave of absence from the fire department. While there’s a risk of reducing the family’s income to zero as he misses overtime pay opportunities and exhausts his paid time off, it doesn’t outweigh the worry of being exposed to the virus as a first responder and bringing it home to his immunocompromised son.
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When I was 6 months old I was diagnosed with stage 4 high risk nmyc Neuroblastoma! I had a constant fever and my mom knew something was definitely wrong. After going to the pediatrician 7 times in 2 weeks, the doctors finally ordered an ultrasound that found a mass on my adrenal gland known to be Neuroblastoma! A very aggressive childhood cancer with limited promise. My parents started day 1 with every and any resource possible. That day September 15th 2015 I became #Johnnystrong. I started chemo therapy immediately and shortly after had a grapefruit size tumor removed from my abdomen at 11 months old! I would go on to receive 40 something rounds of chemo @danafarber @thejimmyfund along with 40 + rounds of radiation. 2015-16 I lived in @bostonchildrens over 200 days including thanksgiving and Christmas! I’ve been to Michigan, Connecticut, New York and New Jersey having lived there for 4 weeks for proton radiation! I have relapsed twice with a golf ball size tumor behind my left eye and a massive brain tumor 2 weeks before Christmas! I don’t complain or make excuses for I am # Johnnystrong. I’ve been under anesthesia over 200x. I don’t know what it’s like to be a regular kid, but that’s fine. There are so many kids like me that see my fight and say they can do it too. Their parents, strangers to us, message, text and email mom and dad knowing we have been through more then most. They know my parents are always willing to help others as no one in the world should have to live this life! No one could possibly ever imagine it unless you put these shoes on. But I’m ok. I’m one in a million ! God put me on this earth for a reason. I have the ability to carry this burden! Not everyone does. But I do. I’m here to show others this fight can be won. Thank you for your love, prayers and support as they ???? help! May god bless you all!!!!! #JOHNNYSTRONG @therealmargaretjosephs @melchancey316 @menace155 @shopperscafe @shoppersmht @bostonscally @bostonbruinsfoundation @redsoxfoundation @runforcharlotte @conceptbuilding @bobpesky7 @sjgcore @waltham_fire_department @they_never_fight_alone @mauimammadukes @trucker_boy_dukes @teamcafemartin @mojo @brock_holt @mookiebetts @gronk
“The families we serve always show great resilience and resolve in the face of health challenges. But the threat of this new virus has presented a whole host of new challenges, such as job loss, lack of child care, increased costs of groceries and cleaning supplies, and changes in prescription prices,” Nicole explained. “Some patients have to change or delay treatment, just as Johnny’s family has.”
Much like others in our community, Johnny and his family inspire us with their strength, bravery, and compassion. As they continue to be the experts in managing serious health concerns, the least we can do is help them navigate the financial side. In this case, Family Reach was able to provide Johnny’s family with additional financial support this month, giving them some breathing room as they adjust to this unexpected situation.
Johnny, his sister, and parents are proof that true superheroes walk among us. Here’s to being #JohnnyStrong!
This article was originally published by the Family Reach organization on April 1, 2020. It is republished with permission.