5-year-old Kailee Kwiecien lays between her parents, Catherine (left) and Dan Kwiecien (right) moments after waking up on Easter Morning, "If she wakes up before us, sometimes we make her crawl in [bed] just in the hope that we will get a little bit more sleep," Catherine says. In January of 2017, Kailee was diagnosed with her third bout of Rhabdomyosarcoma, her parents frequent many unsound nights of sleep due to the stress of her diagnosis and rigorous treatment plan.
Kailee begins her morning routine of medicines shortly after opening her Easter basket, "I can't even count the number of medicines Kailee is prescribed," Catherine says. Kailee must take a slew of medications to combat the side effects of her chemotherapy treatment, such as nausea, but many of the medicines come with side effects themselves.
After a collective 4 years of packing bags for surgeries, doctor appointments and chemotherapy, Kailee likes to be in charge and help with the process. "Turtle", her pink stuffed animal (bottom right) is a staple to every trip out of the house and has accompanied Kailee since the age of one and has been to every chemotherapy treatment and hospital visit since her original diagnosis in 2013.
On their way to Easter Sunday Mass, Catherine stops for coffee, "I have a coffee problem, but if I get a coffee, the girls get a doughnut" Catherine says. It has become a ritual, especially before long stays at the hospital.
Kailee and her 'Grandpa Sam' Manuele before Easter Sunday Mass begins. "She was the first grand-baby for all, but he was the only retired one when she arrived," Catherine says," They are nearly inseparable."
Catherine is comforted by her mother, Anita Manuele after mass at the family church in Brighton, NY. "Church is always really hard for me...it's just one of those places" says Catherine, overwhelmed by her daughter's diagnosis.
Kailee waits as her mom unpacks their luggage in the Golisano Children's Hospital parking garage. "We have a bag of food, a bag of activities for each of us, a bag of clothes, a bag of toiletries... I don't want to be stuck there without something I need," Catherine says.
Kailee enjoys her last bit of freedom before her venous access port, surgically planted under the skin on her chest, is accessed and she is restricted to her I.V. pole for chemotherapy administration. Hospital stays mean a lot of down time for both Kailee and Catherine, who find entertainment on Kailee's kindle.
Catherine and Kailee finish playing a round of a 'Shop-kins' board game while Nurse, Joe Escobar checks Kailee's vitals during her blood transfusion. Kailee frequently needs platelet and red blood cell transfusions in-order to replenish her blood counts before chemotherapy can be administered.
Kailee and Catherine fall asleep together in Kailee's hospital bed, "She refuses to fall asleep by herself. I have to lay with her every night until she falls asleep," Catherine says, "It will likely be a long hard road... but if Kailee has taught us anything, it's don't knock her down and count her out... she will fight."