Caitlin and Amaya personify the beauty and intensity of a caring mother-daughter relationship. When young Amaya was diagnosed with cancer at 13 months, their relationship deepened and a unique, more enduring bond was solidified instantly. Together they began a journey of challenges of immeasurable magnitude; and together they experienced unconditional love and a special place in each other’s heart.
In a hospital bed of large pillows surrounding Caitlin and Amaya, they began the journey. Caitlin wanted to stay with Amaya during the night but needed to make sure she didn’t fall from the larger bed or tangle the IV tubes attached to her chest and arms. They had already been coming to UCSF for numerous trips of chemotherapy and laser treatments. Amaya had been diagnosed with cancer of the retina, retinoblastoma. Caitlin needed to comfort Amaya and concentrate completely on her needs.
“It all happened so very fast. She got diagnosed on August 19 which was a Friday. We had an ophthalmologist appointment scheduled for her since she was one year old. They shined a red light in her eye and they said that it wasn’t doing what it was supposed to do…then, they (the ophthalmologist) made an appointment for a retinal specialist that same day. We had the wonderful two hours to go home and look it up on the Internet. It was really scary!” In less than five minutes, the specialist told them it was cancer, and “we started crying.” Before 3:00 that day an appointment was scheduled for Monday at UCSF. By Thursday, Amaya’s case went to the tumor board, and the decision was quickly made that her eye would need to be removed. On Tuesday the surgery was complete; by Friday a port was put in for the chemo that lay ahead. In three weeks, everything turned around, cancer suddenly consumed their lives.
Caitlin was attending Cabrillo College. The news came one week before the start of classes. After many phone calls, she changed her course schedule and registered for online classes. Chemo treatments were scheduled for 10 rounds over a nine-month period. Since the treatment was so hard on Amaya, they found it necessary to go to the hospital requiring ongoing trips from Santa Cruz to San Francisco. Shots were also required as a part of Amaya’s treatment during this time. Caitlin asked the doctor to show her how to give the shots so she could do them herself at home; and in doing so, she could ensure that they would be given with ease and comfort, and when needed. Back at home, it was important to continue to work through this together.
While the hospital provided numerous resources and Caitlin praised the social worker there, their short and sporadic visits made it difficult to join support groups or utilize many of the services. When they returned to Santa Cruz, Caitlin’s aunt suggested they contact Jacob’s Heart Children’s Cancer Support Services. Before long, Caitlin and Amaya were participating in Jacob’s Heart programs of Family Nights, Art for the Heart, the Adopt-A-Family, and attending events that brought them together with other families with similar experiences. “Jacob’s Heart is awesome,” says Caitlin, “it met all our needs.”
The Family Nights were most significant for Caitlin. She found a place where she could talk to people who understood. “They helped me in several ways. On the one hand, I had a place where I could go and talk about cancer. I needed to talk about it with people who really understood by having had the same experience. I also needed a place where I could talk about something other the cancer. Cancer can be all consuming, but there are other things that happen in your life. I also wanted to talk about those things.” Her advice to anyone going through the experience of childhood cancer is to find a place like Jacob’s Heart where you can talk freely and be comforted. “I wish there was a Jacob’s Heart everywhere. It’s so needed for families going through this. I can’t say enough.”
Art for the Heart was and is still enjoyed by both Caitlin and Amaya. Caitlin described the importance of the program for Amaya and how much she loves it. She has always liked art and “it has always been one of her favorite things, like in the hospital when she was in pain, she always looked forward to coming here for painting, and getting to be like a regular kid.” After the chemo treatments when Amaya’s port was taken out, Caitlin remarked, “She came to Art from the Heart and took off her clothes to paint. One of the other girls said, ‘She has a port. I have a port, too!’ It was great to be around other kids she had something in common with even if it wasn’t the same disease.” In addition, the program allows Caitlin the opportunity to let her emotions flow into something creative and artistic. She’s been amazed by the beautiful work completed by others in the program. “We try to come to every Art for the Heart!”
Overall, Caitlin benefited from many of Jacob’s Heart services, including financial assistance utilizing phone and gas cards during treatment. The Adopt a Family program at Christmas assisted Caitlin by allowing her time to deal with the situation and provide Amaya a wonderful holiday. “It was so nice because you are so consumed with doctor appointments and going for blood drives and shots and treatment. It’s really nice to have someone do the work for you…to give her a real Christmas. She asked for one of the wagons they use at the hospital and she was given one. She loved it!” They have attended the last three holiday parties with Jacob’s Heart and; this year, the anticipation of 3 year old Amaya (not currently in treatment) meeting Santa Claus was ever so exciting.
“It’s just amazing. She is such a great happy, active kid, she’s almost three and a half… and besides for the fact that she has a little scar on her chest, you would never guess that she was sick. She talks about her special eye and she wears glasses for protection but she doesn’t let anything stop her or slow her down. She’s very precocious. It’s a clear picture of what I must have been like.” Caitlin giggles. “She’s so full of questions. She loves to do medical play. For last Halloween, she was a doctor. She got a stethoscope from UCSF and she gives all of her animals’ check-ups.” Since she was so young going through the experience and was often on anesthesia for treatments, Amaya has little memory of the cancer. But, her interest in playing doctor and giving her animals shots or taking their blood seems to reflect the memory she holds. “She is so amazing,” Caitlin says with a beautiful smile.
The yellow eyelashes and red-lined eye tattoo placed on Caitlin’s chest represents the right eye that Amaya lost during her treatment, taken from a picture prior to diagnosis. It’s surrounded by the words, “Pray for Us, Santa Lucia.” “Saint Lucia is the patron saint for children with cancer and those with eye problems,” says Caitlin. The periwinkle flower tattooed under Caitlin’s ear represents one of the chemotherapy drugs that was made from the flower. The word “Heal” on the back of her neck was put there after Amaya finished treatment and is “a tribute to everything she (Amaya) has been through and a prayer for other people going through it.”
Cancer,” according to Caitlin “makes you slow down, appreciate things and never take anything for granted.” Caitlin and Amaya, mothr and daughter, have gained something special that no one can ever take away. But, it can take your breath away!