My son, Tony, is young adult. He is a survivor of cancer — three times over. He was first diagnosed when he was 3 years old with neuroblastoma; then later lymphoma and skin cancer. Both these secondary cancers were a result of his initial cancer treatment and complicated, seemingly never-ending, side effects. 

My daughter, Samantha, has been through it all, with us and all too often, without us, as we spent days and nights for months at a time,at the hospital. 

I love my son and daughter. 

Fatherhood for me boils down to all things that I did not expect to happen; but that did happen, anyway. 

Like one day, over 15 years ago, my wife and I were sitting in a hospital conference room waiting for a team of doctors to tell us what was wrong with our son. They passed us a box of tissues and then told us Tony had cancer and had to begin treatment immediately. I did not expect to ever be in that room or start this journey.

I never expected to be living in a Ronald McDonald House while my son was in treatment for cancer, its side effects and complications. I did not expect to ever learn what chemotherapy does to the body of a child or that children often receive higher doses than adults. I did not expect to ever eat Thanksgiving dinner on a disposable plate while my son was on the other side of the door enduring a T cell transfer therapy. I didn’t expect for him to spend the equivalent time of one full year inpatient in the hospital. I didn’t expect my son during an eight-month hospital stay, to be in an induced coma for five weeks and wake up being unable to move anything but his eyes. Nor did I ever expect to have a son nicknamed “Bad A$$” by one of his doctors, because he survived.  

I really never expected, while my son is sleeping, to still be checking that he is breathing.

I also never expected to donate a kidney to my son. Tony was 13 years old when both kidneys stopped working — one was damaged by radiation and the other by chemotherapy. It is not something I ever wanted to have to do, but, of course, I did it because Tony is my son. 

When you become a father, you expect to see them grow up and it’s terrifying when you don’t know that it will happen. You don’t expect to realize that being a dad can be taken away. 

As my kids grow up,  my job is changing. I am not sure I expected that either. I am shifting from the person doing things for them, to the person supporting them while they do things. For Tony, it is all about supporting his goals and his happiness and his drive to be independent. Samantha is just two years behind him and while her childhood has been different, I will be there doing the same things — letting go, supporting and watching her become independent from us. 

And my wife Karen, Tony and Samantha’s mother, none of us would ever make it through any of this unexpected without her. 

The unexpected is also filled with good things, too.

My daughter Samantha and I share a love of sarcasm and I never expected to have someone that I could roll my eyes with in unison when something eye-roll worthy happened. Most times, Samantha and I would rather not walk into a room. We are quiet, together. 

I did not expect to have a daughter, who was so much like me. 

I never expected to have family, friends, and neighbors make dinner for us every night during Tony’s initial treatment. 

I never expected to make so many friends with other ALSF families, sharing not just similar diagnoses but also joys and regular, non-cancer life things. 

Once, when my son Tony was trached and in the hospital PICU, he was laughing so hard with us that the ventilator alarms kept going off. The nurses had to keep coming into the room to check on him.

I never expected to learn to laugh like that, especially in a hospital.  

I always remember, try to laugh like that every single day.

Tony Salerno is the father to Tony and Samantha and the husband to Karen. The Salerno family have been Hero Family Ambassadors for ALSF for over 15 years; hosting lemonade stands, holding fundraisers and sharing their childhood cancer story to raise awareness and funds for research. 

Updated:

June 2024

First Published: