Ciara’s Story

The two sisters cuddle together on the couch intently watching “My Sister’s Keeper” for the third time.  Though it’s a sad story, it’s become one of their favorite movies – a movie that reminds them of themselves and an experience thankfully coming to an end.  Together the sisters await this month’s celebration that will recognize on the same day Sirena’s 9th birthday and Ciara’s one year anniversary as a cancer survivor at the tender age of 5.

ciaraIt began in 2008 when Ciara was only 2-1/2 years old and was having seizures. Doctors weren’t quite sure what was causing them except for the frequent high temperatures she was experiencing.  Her mother, Mersedez knew something was terribly wrong with her daughter and felt instinctively that it couldn’t just be seizures.  Eventually, one test indicated low blood counts and they were rushed to Lucille Packard’s Children Hospital.  Within 4 hours, the doctors informed her that Ciara had cancer – leukemia. “Just like that”, Mersedez said, “I didn’t know what to think. Your child has cancer?” Cancer was about the last thing she ever expected.  At that moment, their lives had changed and Ciara was about to undergo two years of chemotherapy treatments.

The chemotherapy included an injection in her spine that was painful and disturbing.   Later she received the treatments at home through a port which thankfully diminished the pain.  Mersedez stated how hard it was for her seeing her child sick, “We had to become stronger as a family to deal with it.  It was really hard to accept the fact that your child is sick.  It’s the worse!” The chemotherapy ranged from a two week hospital stay to once every 2 weeks to once a month.  After one strong dose of chemotherapy early on, Ciara lost her hair in a matter of three days.  The family was advised to pull her pillowcase out in the morning before she saw it covered with hair. They so wanted to protect her at that time. Yet when Ciara lost her hair, Mersedez remembered that she responded by becoming very “girly.”  With no hair on her head, Ciara became attracted to hats, little outfits that matched her hats, shades, and make-up.  She became very interested in her appearance and with a smile on her face, really looked quite adorable.

Mersedez’ husband, Alberto, was fortunate enough to be given a leave from work to spend time with Ciara when she was first admitted to the hospital.  Mersedez on the other hand struggled with a job that only allowed her to be there on the weekends.  Gratefully that changed after Mersedez quit that job and found a place working at a hospital in San Jose where she has received tremendous support.  She was given Wednesdays & Thursdays off so that she could be with Ciara for her Wednesday chemotherapy appointments. She feels fortunate after being there for two years with the flexibility needed to support her child and family. She works the swing shift beginning at 3pm, and Alberto is home by the time the girls come home from school. Alberto spends a lot of time with the girls, Mersedez remarking that they are all becoming great cooks.   You can see in her eyes how lucky she feels to have him. Fortunately, they have faced the challenges of pediatric cancer together, and based their success on strong communication. When Ciara was first diagnosed, Mersedez commented on how easy it was to seek solitude and not to have to talk about it.  However, they both knew the importance communication would have in their lives, and the long journey that lay before them proved them right.  On, March 6, 2010 when Mersedez got the call at work that Ciara’s cancer was gone, she ran down the hall screaming to her boss, then immediately called Alberto as she cried on the phone sharing the great news.

Sirena, too, had her challenges as a young girl of 7 years trying to understand and deal with her younger sister’s illness. Mersedez remembers her teacher asking if everything was okay at home.  Sirena was not as attentive as usual at school, and when Mersedez replied that her sister had just been diagnosed with cancer, the teacher clearly understood.  While Sirena didn’t always express it, the experience was difficult for her, too.  It was hard to concentrate, and life was becoming very complex.

Mersedez can point to a number of supports that have helped them along the way – church, family and outside assistance. Prayers helped them get through a great deal of anxiety and pain. Going regularly to church really meant a lot during this time.  As well, the support from their families has been awesome. For one, Ciara’s grandfather sat by her side during the first two weeks of her hospitalization.  “I’m not going home until she does!” he proclaimed.  (And, to this day, when grandpa visits, Ciara squeezes next to him to cuddle up and never leaves his side.)  Her five aunts and uncles were there too, often driving the three hour round trip from Hollister to the hospital to be there for them. Knowing that Ciara could be admitted to the hospital upon any appointment, Sirena stayed with her auntie so she could lead a somewhat normal schedule back at home. Mersedez mother-in-law helped by cutting Ciara’s hair to easy the loss of it falling out – something very difficult for Mersedez to handle. Their whole family has been there throughout their ordeal, and continues to be.

In 2010, they learned of Jacob’s Heart Children’s Cancer Support Services from another family that they had met at the hospital and from Coastal Kids, a home health care agency that provided nursing care for Ciara to stay at home. “We received a call from the social worker who on her first visit…it was like we’d known each other” recalled Mersedez.  She felt very comfortable with her new Jacob’s Heart Family Specialist that brought gifts to the girls. “The girls were very excited going through their gift bags,” she said.  Since that time, Mersedez appreciates the support from their social worker and her ongoing calls and visits to check in on them.  The financial assistance program has been very useful providing gas and grocery cards for the long trips to and from the hospital, especially with the increasing high costs of fuel.  They have participated in Art from the Heart, Holiday Party, and the Kids Card program.  They attend Art from the Heart whenever they can. Mersedez commented that Alberto is always there because he “loves to see the girls so happy!”  When this year’s Holiday Party came around, both sisters announced, “Let’s go, let’s go, we don’t want to be late for Jacob’s Heart!”  Their favorite program, however, is the Kid’s Card program.  Each month, they receive handmade cards written just for them with special activities inside.  When they see their personalized cards (and for Ciara, in her favorite color of purple), they comment cheerfully, “How do they know, Mom? How do they know?”  Mersedez answers every month, “They just know!”  Teary–eyed, Ciara says, “I need to write a letter to thank them.”

Ciara recently told her mom, “Mommy, some people die. But not me, huh!” And, out of the mouth of a 5-year old, she says proudly, “I kicked cancer’s butt!”  On her wall by her bed, a Relay for Life poster reads, “Cancer sucks.”  In her Kindergarten class this year, she told her teacher, “I had cancer but I don’t have it no more!”  The teacher could only respond with one word – “Wow!”  Since her hair has returned, it’s thick and falls beautifully down her back. “Daddy, my hair’s long, right,” she asks continually. This new look has made Ciara very photogenic.  She loves pictures and especially showing off her latest hair style. “She wears her hair up, she wears it down, and she adds barrettes! You can’t even open the window of the car because she’ll tell me that I’m messing up her hair,” said Mersedez of her daughter’s enthusiasm.  “Ciara is what makes us strong,” remarked Mersedez. On the cake for the big celebration, she wants a Relay for Life ribbon on it that says, “I’m a survivor!”

Today, the two sisters are closer than ever. Dinner prayers not only include a special thank you to God and her family spoken from Ciara, but also involve a nightly prayer from Sirena who says, “Thank you that my sister is better!” When Ciara was offered a wish from the Make a Wish Foundation, her first question was, “For my sister, too?”  And, together, the family spent a week at Disneyland. You’ll see the girls walking up to everyone requesting pennies to support the Lymphoma and Leukemia Society, and Ciara announcing that “they’re for kids with cancer like ME.”  And, when the cards come from Jacob’s Heart, the two girls race out of the house. Mersedez says that she’s not allowed to check the mail if they suspect the cards might be inside the box. “I got it!” they both scream rushing to the mailbox.  “Sister, help me!” calls Ciara when even on her tiptoes she can’t reach the mail. Moments later the two of them sit side-by-side on the carpet happily opening their cards spreading glitter all over the floor. Life is moving on…

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