A Reminder Why We're Doing This

I thought I would share an e-mail we received today that introduced us to our newest Honoree, Larissa Campaña, a ten-year old girl who was diagnosed with Acute Lymphocytic Leukemia (ALL) just after her first birthday in 1995. An Honoree is an honored patient who we are racing for and allows us to really get to know just who and what we're doing it all for. Typically a Team In Training team will have multiple Honorees; some are kids, some are adults; some are still battling cancer, some have fought cancer and are now in recovery or cancer free (and even particpate on a Team), some have passed away, and some are even waiting for the disease to really "set in" (i.e they are in stage 0). It's stories like Larissa's that really give me the motivation to get in those extra miles of training when I'd rather be heading to In 'N' Out for a Double Double. Larissa's story as told by her mom is below...

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Diagnosis
My daughter, Larissa, took her first steps on the day after her first birthday. In doing so, she missed showing off for the fifty or so guests assembled for her party—an early indication of Larissa’s headstrong nature—she knew what she wanted and when she wanted to do it.

Like most early walkers, Larissa fell down all too often, getting little bumps and scrapes on her knees. About a month after her first steps, one of the scrapes on her knee didn't heal up as quickly as the others had. That is to say, it looked odd, and it went back and forth between healing and looking re-infected. On top of that, my little fireball took more naps, quite unusual behavior for her.

My mom is a registered nurse. Within a couple of hours of noticing that Larissa had a fever we went to the emergency room at Children’s Hospital, on Mom’s advice. Her fear was that Larissa had a septicemia—an infection of the bloodstream—and that my girl needed intravenous antibiotics. It seemed worth checking out.

The emergency room doctor looked Larissa over and prescribed an oral antibiotic for her. On the way out of the exam room, she hesitated. She looked at Larissa one more time, asked me again about Larissa’s unusual lethargy, and then ordered blood tests. Maybe Mom was right about the possibility of more serious infection.

Larissa’s bedtime came and went while we waited for the results. It seemed to take forever for the doctor to return, and I got annoyed. Finally, after what seemed like hours, we were called to another room. The doctor we met there was young and looked nervous. He was an oncology intern, and on call that evening (FYI—oncology is related to cancer). His news was that Larissa had leukemia. No wonder he was nervous.

I don’t remember if I cried. Not that our conversation is an entire blur—I remember the young intern telling us about our immediate game plan, which included intravenous antibiotics and chemotherapy. At about midnight we were sent up to the fifth floor to get started. Waking in my daughter’s hospital bed the next morning, I was struck by the feeling that I had fallen out of bed and woke up in hell.


Treatment
As the parent of a kid with leukemia, you don’t get much time to absorb the news before you are intimately involved with your child’s care. That first full day at Children’s, a surgeon inserted a tube through Larissa’s chest all the way into her aorta, just beside her heart. As scary as that sounds, imagine being told that you have to learn to draw blood from that tube, and that you are responsible for keeping the dressing around it clean. A clinical nurse educator let me practice on a doll first. Pretty soon, it wasn’t a big deal pushing anti-coagulants and sterile water from a syringe into the tube sticking out of Larissa’s chest. I graduated! The tube’s importance was that it allowed Larissa to avoid feeling like a pincushion from all of the shots and blood tests they would be giving her.

The head of the oncology department soon met with me to explain in greater depth what was going on. He talked to me about the great success brought about by leukemia research, about how the survival rate is so much better today. My mother agreed: when she was training for nursing in the 1960s she was told to prepare parents of children diagnosed with leukemia for their kids’ inevitable deaths. The oncology expert let me know that there was an 80% chance of a cure for Larissa, and that each month Larissa stayed cancer-free after her initial treatment, her chances of survival increased exponentially. He laid out a schedule of chemotherapy for me that included intensive phases interspersed with moderate phases, over the course of two years (ouch!).

Two weeks after the diagnosis, and with a bag full of chemotherapy drugs and medical supplies for the tube in Larissa’s chest, we were sent home from the hospital. Some friends pitched in with my mother and cleaned our cottage for us, to help Larissa stay infection-free. Larissa managed to down about 5 different kinds of crushed pills a day, with the help of a little juice.

Pretty soon, Larissa lost her hair from one of the chemo drugs, and her face got round from another drug. We visited the outpatient clinic about three times a week for treatments, and the hospital ward less often, when Larissa’s low immune system created fevers, and she needed IV drugs. It wasn’t that bad. The worst part for us both was replacing the gauze around the chest tube, which involved my mom holding her down while I ripped the clear tape off of her skin. We had to do this every time she bathed, which was every other day.

At the hospital, we made friends with staff and patient families. As horrible as our situation was, there was always someone else who had it much worse. (One other single mom that I met there had just given birth to a new baby when her one-year-old was diagnosed with a brain tumor. Those two children grew up running the halls of that hospital.) The chaplain at Children’s Hospital, Sister Bernadette, very gently helped me through my feelings of guilt for my daughter’s cancer. Our favorite part of being in the hospital was the food. Larissa loved the french fries, while I adored all of the down-home cooking that came out of the hospital kitchen. Someone there must have been from the South, as grits and barbecue made frequent appearances on the menu.

Two years passed, Larissa’s hair grew back, and I grew familiar with the patterns of life on treatment for leukemia. At the very end of treatment, her body sensitized to even the slightest doses of the chemotherapy drugs, Larissa spent a couple of months in the hospital with fevers. It did seem so very unfair. At one point, the doctors even investigated whether a relapse of the leukemia was responsible for her low immunity. Then, without undue drama, Larissa took her last chemotherapy pill in December 1998. Before she learned to ride a tricycle, she had undergone more than two full years of chemotherapy.


Since Treatment
The first six months off of treatment were the most terrifying, because that is when relapses would usually occur. We started putting our lives back together, with Larissa in a preschool, and me at grad school trying to finish up a master’s degree. At a time you would think we’d be the most triumphant, with two years of treatment over, we both had emotional difficulties. Several times, Larissa ran across the rug at quiet time in her preschool to beat up her best friend. During that period, Larissa started in individual counseling, and we attended The Louie Group, a support group for families of kids with cancer. Again, we made friends who helped us through.

At the present time, in the fall of 2005, Larissa is ten years old. She has an amazing personal strength, in her body, in her will, and in her heart. Larissa loves to be sympathetic; she will always go and greet another child who is shy or new, and when she’s new herself, she’ll always go right up to other children and start to play. If I don’t watch her, she’ll give away all of her favorite possessions.

Since Larissa’s health has returned, it’s our turn to be grateful. We find great satisfaction in doing volunteer work like Team in Training, as well as doing public speaking for Children’s Hospital. And we really do appreciate the effort that Team in Training participants put out. As Larissa says, “Team in Training are my heroes.” That “give back” mentality continually motivates us. Even in my professional career, I chose to work for a non-profit agency involved in saving lives.

In terms of likes and dislikes, Larissa loves all the usual ten-year-old stuff: reading mysteries, watching movies, visiting friends, swimming, riding her scooter, Bratz dolls, pizza, etc. She says she wants to be a florist when she grows up. She hates to have her hair brushed, bedtime, and having to get to school on time. All in all, Larissa is turning out to be a pretty normal big girl.