Our story begins in northern NJ. It was January 6th, 2012. It was a beautiful, brisk Friday and we were looking forward to a date night since we still celebrated our dating anniversary back then. It was also the day that our lives were turned upside down.
Charron had made an early appointment at the doctor's office the night before when one of the teachers at Emma's school expressed concern over Emma being pale when she awoke from her naps. Normally we wouldn't have been concerned but Emma had been having bloody noses, which we dismissed as a combination of the cold, dry weather and her tendency to pick her nose, as well as an unusual amount of black and blues in places where you wouldn't expect a 3 year-old to have them.
The doctor agreed that we were probably overreacting (a common trait for Charron) but agreed that the "bruises" were unusual and that we should have some blood taken at the local hospital just to be safe. Charron and I were a little surprised considering Emma had gone so many months without getting sick but headed over to the hospital anyway. On the ride over, we played out all the "worst case scenarios" and agreed that if anything, Emma might have been anemic (since she refused to eat red meat at home) and we'd have to give her iron supplements going forward.
On our way home from the hospital, we decided to treat Emma to some silver dollar pancakes at the local diner since she was such a good girl giving blood. On the ride home, we talked about how Emma would take a nice long nap on such a full stomach and how we would get to do the same. As we put the key in the side door, the phone started ringing. Charron picked it up and the doctor asked to speak with me.... Emma had Leukemia.
Emma spent the next twelve days in the Hackensack University Children's hospital. She received platelets and red blood cells the first few days to get her ready for treatment. The following Monday, she had a port inserted into her chest and began her chemotherapy treatment.
The chemo caused horrible mood swings and sapped her energy but she loved riding her IV pole (which she named Plex after the robot on Yo Gabba Gabba) and would light up when someone would come to visit her. She would start every day by asking who was coming that day. Emma loved keeping her nurses on their toes, whether it was taking her stuffed monkey (Alex) for a walk in the stroller past the nurses' station or telling them to go away when they walked in her room to take her blood pressure.
Most of the day was spent in her hospital bed where she was surrounded by a rapidly growing collection of stuffed animals and her favorite blankets. She ordered pancakes every day for breakfast and usually asked for a grilled cheese sandwich with a side of cucumbers for lunch. Dinner was always pasta (no sauce) and the highlight of her day. When she had the energy, she loved going to the playroom where she could paint or ride her tricycle around the table. She also loved playing with all her new toys and games or blowing bubbles in her room.
We came home from the hospital on the 17th and Emma (and mom and dad) were so happy to be home. She was on antibiotics the first five days so Charron and I had to learn how to flush an IV and give Emma her meds through her port.
The steroids she was on the first month gave her an insatiable appetite. She gained 5 pounds in a month and was going through a box of pasta each day. One morning she had knocked off three bowls of pasta with butter, a cup of broccoli, a cheese stick, a handful of pretzels, and 5 cups of water before 8:00 in the morning. We always got a kick out of her offering to help us make the pasta when she would wake us up starving at 2 in the morning. She gained so much weight so fast that she has trouble walking and needed help getting up on the couch. Another drug had damaged one of her vocal cords and gave her a deep rasp whenever she talked.
She went into remission after a month of treatment (and thankfully has stayed there) but had to endure 26 months of chemo, steroids, lumbar punctures, weekly clinic visits, some of them lasting all day, losing all her hair, numerous trips to the emergency room, countless xrays, a heart monitor that caused painful bruises because she had to wear it for a month, and the isolation from the rest of the world because we couldn't risk her immune system being compromised during treatment.
We couldn't have survived the ordeal without the outpouring of support and prayers from family, friends, and complete strangers. We were the lucky ones but countless others before us have paved the way towards the ultimate goal, a cure, and a day where Leukemia and other blood diseases becomes a thing of the past. That is why we decided early on to adopt LLS as our chosen charity because groups such as LLS not only fund invaluable research towards a cure and advances in blood cancer treatment but also provide educational, emotional, and financial support to families such as ours during a time of greatest need. I am incredibly proud that Emma’s Light the Night teams in both NJ and TN have raised over $100k in the past 6 years in support of that goal.