Luckily, Brent was really young. He had only gone to three days of nursery school, so he didn’t realize that he had a new routine. Cancer treatment was the new “normal.” Everyday activities depended on his morning blood counts. He would be fine and then, an hour later, he’d spike a fever out of nowhere and I’d rush him to the ER for yet another inpatient stay.

I remember a few things that marked the treatment for me.

I remember telling my mom that there was no phone because I was sure it was a mistake.

I remember going with Brent to do the biopsy the morning after diagnosis, and the doctors carting him away and me saying “wait! I need to get some relatives here and donate blood, you can’t just use any blood, I need to get it all set up for him.” I was thinking of a surgery that my daughter Madison had when she was 8 weeks old and how we had set up a special blood bank for her, so that she wouldn’t get blood from the national bank. I remember – like it was yesterday, the look the doctor gave me. I remember the doctor looking at me with disbelief, pity and comprehension all rolled into one, and saying “you have no idea what you are getting into, do you? He is going to need blood almost every day. If you don’t relax you’re never going to make it”

I remember feeling sorry for myself for being so pregnant and having to cart Brent around from hospital to doctors to hospital. Thinking “woe is me, this is so tough.” Until a doctor told me that almost all neuroblastoma mothers were pregnant at the time of diagnosis. Luck of the draw since most kids are diagnosed when they are two years old. After that, I didn’t mind sleeping on the blue vinyl couches at much somehow. Funny how the mind works.

I remember after the transplants, when we were isolated and Brent spiked a fever and I had to take him to the ER for what had become almost routine. I loaded him in the car and walked to my mailbox to see if the mail had come. My neighbor was driving by and stopped, she asked where I was going. When I said the Emergency Room she said “and you stopped for your mail???” She was floored. Yet I knew that I was going to spend the next 10 hours waiting for doctors and tests and then sitting in a tiny room with a lethargic and doped up 3 year old and that magazines would come in handy.

I remember other times Brent had so much energy that we stickered his bald head for fun. Or made sock puppets from the yellow hospital socks.

And I remember the absolute terror the one time things were really bad, he got a gram negative infection and went from singing twinkle twinkle little star with Madison to one minute later vomiting strange projectile things like he was an alien and the dr on the phone saying bring him in. We said “ok we will just change him out of his vomity clothes and be right there” and they said “no. drop the phone and drive” So we did. Dropped everything and ran to the car, covered in vomit and without his meds.

And I remember that same day, a friend driving Brent’s medicine to Yale right before the helicopter was scheduled to take him to Boston Children’s. I remember friend’s making meals for us. I remember friends putting baskets together of toys and food, endless amounts to keep Brent happy in the hospital. I remember friends donating blood for him when he overused the national blood supply and needed extra.
And as for why I am not here tonight, today is my daughter Madison’s 6th birthday. While all families want to be with their kids on their birthdays, it is a bit more pronounced for us. Over the past couple years we have learned that our world is precarious. Brent survived the treatment to rid him of his cancer. Many kids don’t. Brent is cancer free today. Many kids aren’t. Brent has a 50% chance of surviving. Fifty sounds low but it’s really not. Ten years ago Brent wouldn’t have had a chance. Thanks to people like you, and efforts like Relay, studies have been funded, research has happened, and he has a 50% chance of survival. We take each day as it comes and try not to think about the cancer – but the truth is, if we look directly at the sun, we know that if the cancer comes back, it isn’t just Brent’s life that will be over. The life that Madison and Kira know will never be the same either. Especially Madison, she is an “Irish twin” to her brother and they are inseparable. So with each milestone (like Madison’s birthday celebration tonight) we want to make it special because we don’t know if it is the last happy one that she will have.
When we think back to the treatment, my husband and I, we wonder how we did it. But we also have good memories. We had so much fun with Brent. It is amazing how simple life is, once it is put to you like that. When everything becomes so difficult, life becomes so simple. The home renovations can wait, who needs a vacation?, out of style shoes – all ok. It’s even ok to skip the gym once in a while (though Mike endeared himself to the Boston Children’s nurses by running up and down the stairs of the hospital for exercise). The point is, that when we reflect on the treatment and when we aren’t thinking of the fear we lived with, we think of the times we spent with our kids – when nothing else mattered. And we think of how our friends, our family and the community really came together and got us through it. Without the community we couldn’t have made it and we certainly wouldn’t be standing here telling you that we had FUN. But we did. So thank you. Thank you for all that you do.