2019 Picture Stories

Catherine Kwiecien is reunited with her 7-year-old daughter, Kailee Kwiecien after a MRI scan to check the progress of her first round of chemotherapy treatment this [fourth] diagnosis. “This is the only time she lets me give her so many snuggles, so I have to take advantage of it,” Catherine said.

Kailee shows her ‘Superwoman’ doll to Catherine as Catherine gets a streak of her hair dyed blue in honor of Kailee at a local benefit for the family in Spencerport, NY. Kailee also wanted to participate in the event, so Ronnie, the hairdresser, dyed what remained of Kailee’s fine hair, purple along with adding a streak of color to her doll’s hair.

Catherine and Dan meet with Dr. Korones on Friday, April 13th at Golisano ChildrenÕs Hospital. ÒI just donÕt see any way we are going to be able to get her through thisÉÓ says Dr. Korones, Òdoes that mean I have no hope? No, I still have hope.Ó “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 live. It’s normal…unfortunately,” Catherine said.

Catherine and Kailee head off to the hospital for Kailee’s in-patient chemotherapy treatment. Dan Kwiecien works full-time, many of his shifts being overnight. ÒUsually 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.

Kailee focuses as her nurse preps her shot for her upcoming MRI while Catherine enjoys catching up with the nurse on June 29th, 2018 at Golisano Children’s Hospital. “The nurses here are family”, both Catherine and Kailee know almost all of the pediatric oncology staff from over 5 years of chemotherapy treatment for Kailee’s battle with Rhabdomyosarcoma.

Kailee is showered with bubbles and wishes from her first-grade classmates on her 7th birthday at Floyd Winslow Elementary School in Henrietta, NY. Kailee was scheduled to check into the hospital for chemotherapy after school, but it was later rescheduled due to a room shortage.

Kailee and Catherine read a book before bedtime at their home in Henrietta, NY. Catherine typically falls asleep with Kailee to comfort her.

“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?”

A detail from Wednesday Westwood’s wardrobe room at her home in Rochester, N.Y. Feb 15, 2019.

Westwood applies layers of makeup at her home in preparation for WTFF.

Westwood inserts foam pads into her leggings to accentuate the curvature of her body.

Neon Calypso brushes her wig at Westwood’s home in preparation for WTFF. ÒNeon like the element. Calypso like the drum.Ó Born in Rochester, N.Y., Calypso started drag as a full-time student in the summer of 2015, while working multiple part-time jobs. She is now a full time drag working between Boston and New York.

Detail of spray painted nails at Westwood’s home.

Portrait of Wednesday Westwood (left) and Neon Calypso in Westwood’s home

Drag queens prepare for the WTFF show at Lux Lounge.

Portrait of drag queen Judy Darling and Lux LoungeÕs resident cat.

Drag queens Wednesday Westwood, Veronica Lace, Samantha Vega, and Judy Darling have a celebratory drink before performing at Lux Lounge for the two-year anniversary of What the Frock Friday.

Wednesday Westwood performs on stage.

Judy Darling grabs cash tips from the audience.

Neon Calypso undresses after her performance at Lux Lounge.

Jamie, carries her son, Joshua, 10, to the couch as his brother Caleb, reads a book nearby on May 15, 2018. When Josh gets home from school, Jamie carries him from his wheelchair in the garage into the living room.

Joshua and Caleb play with legos with their father, Ben (center), on May 15, 2018. Josh will often hand pieces to one of his family members and direct them where to place it.

Caleb, 7, and his cousins go down a slide during Josh’s tenth birthday party on April 2, 2018 as Josh watches with his father and aunt.

Joshua signs with an interpreter during speech therapy at school on Nov. 10, 2018. Josh is profoundly deaf in one ear and uses American Sign Language to communicate. Members of his family are also working to learn ASL.

Josh (right) waves at students as they move through the halls of his school on Nov. 10, 2018. This year, Josh switched schools in order to have a more challenging environment. Jamie, his mother, say the switch has been great and that Josh is happy being with his friends at school.

Joshua, 10, participates in floor hockey during Physical Education at school on Nov. 10, 2018. Josh usually uses his wheelchair at school but uses the walker in P.E.

Josh, 8, watches as his parents setup Christmas lights and his brother, Caleb, 6, runs into a leaf pile on Nov. 18, 2016.

Ben (right) holds Joshua, 8, while playing in a leaf pile outside their house on Nov. 18, 2016.

Jamie (left) calls to update family members after her son, Joshua (right), 10, had surgery to get his Gastrostomy Tube at Golisano Children’s Hospital on June 12, 2018. Jamie says that the G-Tube has made life a lot easier for their family.

(Brothers – Brothers, Joshua and Caleb, last name withheld, have a relationship that constantly evolves. When they were younger, the boys did not play together very often, but as they grow, Caleb, now 8, is beginning to take a more active role in Josh’s life. Josh, now 10, was diagnosed with Cerebral Palsy as an infant, which has inevitably led to differences in how him and his brother grow up. – 10) Joshua, right, looks over at his younger brother, Caleb, while sitting in their living room on Nov. 17, 2018. Although the boys have different lifestyles, they do find opportunities to connect and play with eachother.

Jamie and her son Caleb (right), 7, cuddle in their home on Dec. 13, 2017. The family tries to make sure that Caleb gets individual attention whenever they can since they often have to focus on Josh.

Josh, 8, plays with a Cloud b twilight turtle toy at his home on Nov. 18, 2016. Josh loves playing with colorful lights, an activity Caleb often joins him in.

Christine and Rick attend a hip hop dance class at Let’s Dance Studio in Rochester, N.Y. on Oct. 13, 2018. They began dancing after the stroke to have something to do together. It has been instrumental in Rick’s recovery because it exercises his body and short term memory.

Christine drives Rick to their dance lesson on Oct. 13, 2018. Christine does not like driving, but she has been forced to learn how to drive a handicap accessible van to transport Rick and his wheelchair. ÒWhen I first brought him home it was rough, it was like bringing a brand-new baby home. But I love him, I was not going to put him in a nursing homeÑno way. They said, Ôyou canÕt take care of him at home.Õ I said, Ôwatch me.ÕÓ

Christine helps Rick put socks on in the morning before going to their dance lesson on Oct. 13, 2018. Rick became paralyzed on the right side of his body after the stroke. Since beginning to dance he has regained some mobility in his right leg.

Christine prepares Rick’s pills for the week on Oct. 13, 2018. The medications include treatment for blood pressure, cholesterol, low dose antibiotics to prevent UTIs and neurostimulates. Christine started to take her own medication for high blood pressure after the stroke, but will sometimes forget because she is taking care of Rick. “I always forget me.” she says.

Christine gets up at 6 am to read scriptures and exercise before getting Rick up at 8 on Oct. 30, 2018. “I will get up even if I’m exhausted. It’s my favorite time of the day… it’s me and me.” she says.

Rick attends music and speech therapy at Nazareth College in Rochester, N.Y. on Oct. 17, 2018. One of the results of suffering from the stroke was aphasia. The goal of therapy is to improve verbal and nonverbal communication through repetitive speech exercises.

Rick helps his granddaughter Raquel Cravatta pick up leaves in their driveway on Oct. 30, 2018. The grandkids come over twice a week after school.

Raquel and Milla Cravatta, Christine and Rick’s grandchildren, help Rick play an educational game on the iPad on Oct. 30, 2018. The younger grandchildren have no memory of the way their grandfather was before the stroke, but the older ones actually like this version of Rick better. “This grandpa is funnier. The other grandpa was more stern.” Christine says.

Christine prepares her bed on the floor beside Rick on Nov. 20, 2018. She has been sleeping on the floor since he came home from rehabilitation. “I miss my bed, it’s like I’m camping every night…” she says.

Christine struggles to push Rick into the door to Sweet Briar, her friend’s event space on Oct. 14, 2018. Christine recently retired from being a culinary educator at BOCES, but has been helping her friend with food preparation several times a week. She often brings Rick to work with her.

The Cravatta’s pray before eating dinner at Rick’s birthday party on Nov. 4, 2018. Christine and Rick are devout Christians. “We’re just passing through here. And that’s why I can deal with this tragedy. Because this is not all there is, in my beliefs in Jesus Christ… and I’m really okay with my life, I really am. I’ve made peace with it.” Christine says.

Christine and Rick share a kiss at the Radisson Hotel Rochester Airport during the monthly Jazz Night hosted by Flower City Jazz Society on Oct. 15, 2018. “Sometimes I cry because I love you. You’re my blessing.” she says.

Rocco and Xander, talk in the grove at Camp Stomping Ground on July 19, 2018. The Grove is a space where campers can play games or hang out in hammocks if they want a break from the more structured activities at camp.

Josie and Ada lay on the main field at Camp Stomping Ground on July 3, 2018. The two are friends from home who have been coming to camp together for several years.

Chad throws his hands in the air during a shaving cream war on July 4, 2018. Each week at camp, there is a special event, either a shaving cream war or a giant slip ‘n’ slide. These events are the favorite activities of many campers and staff members.

Bailey does somersaults during open ball field on July 16, 2018. Ball field is a time where campers can move freely between activities on the main field before the all-camp game in the evening.

Nola swims underwater during the waterfront period at camp.

Gideon slides down a giant slip ‘n’ slide during a special event at camp on July 11, 2018.

A teen camper is covered in paint during their art gallery activity on Aug. 2, 2018. The teen programs at Stomping Ground encourage leadership and teamwork, often allowing the teens to help lead programs for the younger campers.

Campers sit together on a slack-line in the grove on Aug. 1, 2018.

Ramzi points out lily pads while boating in a Corcl boat with Sam, a staff member, on July 4, 2018. Ramzi was homesick at first at camp but became more comfortable as the days went on and spent almost all of waterfront at the boat dock.