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.
Kailee looks out the door to her hospital room, 'on lookout' for nurse Joe to return with her release paperwork after a 5-day stay over Easter Sunday weekend for inpatient chemotherapy treatment at Golisano Children's Hospital, in Henrietta, NY. In January of 2017, Kailee was diagnosed with her third bout of Rhabdomyosarcoma, a rare pediatric cancer.
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. Both sides of the family live nearby, which has provided tremendous emotional and practical support through Kailee's journey.
Catherine and Kailee head off to the hospital for Kailee's last in-patient chemotherapy treatment. Dan Kwiecien works full-time, many of his shifts being overnight. “Usually we are just kinda passing each other and when he gets home, I leave and when I get home he leaves. On rare occasions we are home at the same time in the evening. So we see each other one day every two or three weeks," says Catherine.
"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 usually packs her own bag, as this has become a routine, having been in and out of treatment since she was 2.
Catherine comforts Kailee as her nurse accesses her catheter port to administer chemotherapy. "It depends on who’s accessing her, if it’s a nurse she’s familiar with, she’s fine. If it’s someone new, she freaks out. You can tell in her body language how it’s going to go before it even happens," Catherine says.
Kailee hugs her mom as she heads down the stairs to leave for work. Catherine's schedule has been significantly affected by Kailee's grueling treatment plan, but going to work helps her have a sense of normalcy.
Kailee jumps on her bed with Morgan, Kailee's younger sister on St. Patricks day at their home. Morgan has only known Kailee with cancer. Catherine found out she was pregnant with Morgan just weeks after Kailee's initial diagnosis in 2013.
Catherine and Dan meet with Dr. Korones after suspicious symptoms started to surface, 3 months after Kailee's last chemotherapy treatment, on Friday, April 13th at Golisano Children’s Hospital. “I just don’t see any way we are going to be able to get her through this…” says Dr. Korones, “does that mean I have no hope? No, I still have hope.”
"With this outlook our decisions will be much tougher. There will be things we may try to do to be prepared should the day we fear ever come. Catherine and I have not yet figured out how we could possibly handle the loss of our Kailee," Dan says.
Kailee cried after her parents told her the news, but quickly bounced back to her goofy, playful self. "This is just the life they life, it's normal. Unfortunately," Catherine says.
Kailee sits with her mom as her nurse preps medicine for her upcoming MRI to check the progress of her first round of chemotherapy treatment this [fourth] diagnosis. "She's been complaining about stomach pain lately, so I don't know how I feel. But then yesterday a calm just came over me, so we will see," Catherine said.
"Anxiety, tears of fear, sadness, restless sleep, the list goes on. But smiles, laughs, love, snuggles, memories, all still being had... enjoying one day at a time," Dan says, "The reality is, we know we still have a long road. A long road with a lot of unknowns. Where will the road end? I suppose any progress is progress but every ounce of me is hoping for a miracle in the end. A miracle drug, a miracle cure, is this finally the one?"