This is the story of Rosa.
Very few people would ever describe a pediatric cancer diagnosis as a “blessing in disguise,” but that is exactly how Lourdes describes her daughter Rosa’s cancer diagnosis when she was just eight years old.
Rosa had been sick for several weeks, and despite several visits to the doctor’s office, they were unable to pinpoint what was ailing her. When the doctor finally told Lourdes that her little girl had been diagnosed with leukemia, she didn’t even cry. “We had struggled so long with waiting and tests that it gave me time to prepare. When the doctor told me, I was like, ‘ok, what do we do now?’ A part of me thought that at least we know what it is now, so we know what to do.”
Lourdes says one of the areas Rosa has struggled with most following her cancer diagnosis is her lack of control to change her situation. Looking back, Rosa had a whole year taken away from her childhood. Rosa missed school and still cannot participate in sports because of limitations of her ongoing treatment and she does not have the endurance she had before. She has to be careful wherever she goes and has to wear a mask to school to guard against germs that could become life-threatening.
“Everywhere we go we have to wipe everything down. She’s been fairly healthy the last year but every cold, cough or pain brings it all back. There’s one week a month where she receives treatment and I can tell that everything falls apart. The medicine treats the cancer, but it makes her physically sick,” Lourdes confides. “She will start getting anxious a few days before. We have three weeks that are pretty good and then a reminder comes back. Emotionally, I can tell she doesn’t sound right.”
Lourdes reflects that Camp Independent Firefly was the first time Rosa had been away from her family. Rosa had a great time at camp and allowed her to enjoy the innocence of childhood that so many families take for granted. Lourdes says camp will always hold a special place in Rosa’s heart and she looks forward to it each year.
The emotional and financial support Candlelighters has given the family has helped them tremendously. To Lourdes, it is reassuring to know that there are other people who care and are there to help the family with whatever they need.
“There’s a group of people who ‘get it” and understand how difficult it is. It’s the little things you wouldn’t think about,” Lourdes continued. “Like people dropping off gifts every day leading
up to Christmas Eve. Christmas shopping all of a sudden becomes a huge burden, no matter what kind of insurance you have, not just the expense but the time to go shop and take care of your family. I am so thankful for Candlelighters because I just never knew how much all of it was going to be.”
When asked about what advice she would share with other families with children faced with cancer, Lourdes says to take all the help that is offered. “This is not the time to say ‘I can do everything.’ Have faith and continue on. I used to think that I couldn’t handle anything bad. I didn’t think I was strong enough. I used to wonder how people handled things looking at their crises from the outside. The truth is when it comes, it comes – there’s no time to feel sorry or cry but to just move forward. I was only able to do this through faith. Not through the next week, but the next day. And then handle the day after that. Take it one day at a time.
“Rosa was mature and smart enough to know what was going on, so we weren’t really able to shelter her from how ugly it really was. I don’t want to be negative to her, but I have to be honest with her. If it came back, I don’t want her to ask me why no one warned her it could come back. It will really never be over even if it doesn’t come back. If we beat this, then we can beat anything.”
Rosa, who loves art and reading, will receive her final IV treatment in May and will take her last chemo pills on May 31, one day after her 11th birthday. Certainly, this brave little girl, as well as her family, is deserving of two (or more!) separate parties! And, has another Camp Independent Firefly to look forward to this June.
Photo Credit: Denise Truscello