Meet Ms Jessica...

At 15 my biggest care was what I would wear to my school formal and hoping to be popular. I went to my formal in a fabulous dress, it was such a blast. On February 18, 2001 my life changed forever.

Walking home from school I found I was unable to breathe. I had bronchitis before and so I thought this might be a cracked ribbed from all the coughing, but this was much scarier. My Mom took to the emergency room where they discovered I had a collapsed lung. The doctors told us that I had t-cell lymphoma. Everything around me began to change.

My five year old brother thought he would get “it.” Because there are no local hospitals to treat kids with cancer, I spent most of my time at Lucile Packard at Stanford – it is an hour long trip each way to get there. My longest stay was two months. My friends visited at first, but slowly they disappeared. They would call and I felt too sick to call back. Once a friend said, “You are so lucky to get to stay home all the time.” I don’t think she meant to be cruel, but it made me crazy mad. It got so hard to relate to folks who weren’t sick – they just didn’t get it. I felt so alone.

Things began to change when my family was referred to Jacob’s Heart. The counselor, Marlene, came up to Stanford to see me with a “welcome bag” full of stuff. One thing I remember from the bag was a yellow quilt – yellow was my favorite color at the time.

I met some great new friends around my age through Jacob’s Heart. After the first time we got together we thought “We should do this every month.” The teen group was born! Being 15 and in rooms (at the hospital) with little kids or crying babies I needed a place to be understood. I was frustrated and there was nothing but pain, pain, pain. We “got” each other. After meeting the other girls I was not so alone.

I went to an Art from the Heart session at Jacob’s Heart. I had met one of the kids somewhere else before, at the time, I didn’t known she was sick. She came to see me while I was at Stanford. I asked her all these questions. With her answers she was trying to be nice, but also told me the truth about what I was going to face.

My looks changed drastically. My face puffed up from the drugs I was on, I gained a lot of weight, and I lost my hair. Imagine being 15 and bald?! I was one of a rare percentage of cases that if there was a side effect from treatment to get, I would get it. I was a bad patient. I went through three doctors – I was so angry. I remember seeing little kids in the hospital, too. I know life isn’t fair, but that really wasn’t. I was in so much pain that I didn’t want to move or get out of bed. I am so grateful for one doctor who really pushed me. She told me that if I didn’t start walking I might never walk again. That scared me. My mom was my strength through it all. I started to walk. My mom was there for every painful tiny step along the way.

Today, just over three years out of treatment, I am still walking. This time, I am not only walking for me, but for so many others I hope never have to walk in my shoes. I am walking in the Maui Half-Marathon to raise money for cancer research. I also want to do this to prove to myself that I can. I want little kids and teenagers to not have to go through this and to reassure those that do go through it that they will be supported and are not alone.

The support I receive through Jacob’s Heart looks a lot of ways. I can talk to them about anything. They helped me get connected with Cabrillo Student Services for extra help as I entered college and Marlene even taught me how to ride the bus. I’ve met a lot of friends and know Jacob’s Heart is a safe place for me. I even volunteered! When I was in-treatment I brought a pillow from home to use at the volunteer desk to ease my back pain. No one stared at me. I didn’t feel like I was being judged. Volunteering at Jacob’s Heart gave me a place to help and not think about my pain. Volunteering was therapy in and of itself because I was helping others. I liked being around people who I enjoyed being around. It gave my grandma a break, too!

Oddly, there have been a lot of upsides during my journey with cancer. I’ve gotten to meet a lot of people… the first lady for one. I lobbied to help pass the Nick Snow bill, which is changing the way kids can get hospice care at the end of life. I’ve traveled to Las Vegas, Newport Beach, and Washington DC. I’ve met dear, dear friends – Stanzy, Brittany, Greg and others.

Today, I miss all the things I did before having cancer… being able to run, snowboard… pain is always present. I have a hard time letting go of the way things used to be. I get angry more easily than I used to. It’s way better than during treatment though!

-Jessica recently turned 21 and remains cancer free. She works at a local fitness center, is in training to walk a half-marathon and is still a very active member of the Jacob’s Heart young adult group.

Meet Lance...

“He’s my hero! Never once has he said, ‘I give up;’ he’s always trying and he doesn’t complain. He’s so positive. He has empathy for people. Like, if someone is crying, he will go up and ask them what’s wrong or give them a teddy bear or something out of his own personal toy collection.’ Here you go!’ He’s always been like that.”

Charlotte, a caring mother with a contagious smile, is speaking of her 11-1/2 year old son. She’s extremely proud of his positive nature and ability to turn challenging situations into acceptable experiences. Coincidentally named Lance, he, like Lance Armstrong, was treated for brain cancer in the year of 1996. Charlotte’s Lance, however, was 10 months old at the time of diagnosis. Born with what doctors thought was hydrocephalus turned out to be a cancerous brain tumor. The young parents of this pudgy, beautiful baby boy were instantly faced with challenges they couldn’t have imagined. They had limited, if any, knowledge about cancer and what lay ahead of them. Charlotte often refers to that time of their lives as “freaky;” freaky because they entered an unknowing, unexpected world of continual hospital visits, confusing medical terminology, and sudden feelings of fear and apprehension.

Hospitals, doctor visits, and treatments have become a way of life for Lance. He’s involved with a pediatrician, ophthalmologist, audiologist, oncologist, neurologist, and endocrinologist. He spent his first Christmas at the hospital undergoing 6 hours of surgery, underwent high dose chemotherapy at 14 months and radiation at 16 months. At 18 months, the family heard the word “remission,” and they celebrated! Now, a 10-year cancer survivor, Lance is a typical 11 year old boy. He does not like girls, hates the color pink and loves to ride his quad. His overall development has been a bit slower as a result of all the early treatments, but in recent years he seems to be catching up. He knows himself as a “cancer kid,” although he was too young to remember chemo and radiation. The cancer diagnosis follows him from year to year, and he has become an expert on advising the nurses and doctors as to what needs to be done, where and when. “He’s a crack-up,” says Charlotte, “When he gets to the hospital, he pulls up his sleeves, takes his own temperature and tells them to use this, this and this… which are the tubes that need to be drawn.”

For Lance and his family, one of the most significant developments during their cancer journey has been their intense relationship with Jacob’s Heart Children’s Cancer Association and other families with children with cancer. Charlotte cannot say enough about the support that has been provided to all family members. The other moms at the hospital going through the same experiences were of great comfort to her. She remembers the days when Jacob’s Heart was in its infancy and didn’t even have an office. She had heard about a support group and joined three other moms at Fresh Choice. “It was great. I could talk to people and I can tell them what I was going through and they could tell me. And it gets better…because I was still freaking out. And they’ve been there ever since.” She even calls Jacob’s Heart today when she needs advise on handling issues that might affect Lance. Lance is still involved with Art from the Heart and Jacob’s Heart events at the new Watsonville site, which the family loves since its only moments away from their home.

There is such sincere and passionate love reflected in Charlotte’s eyes and smile when she talks about Lance. But that’s not all that is evident. Charlotte has a gold ribbon tattooed on her ankle that has Lance’s name, birth date and remission date on it. Lance, indeed, is her hero.

-Written by Susan Osorio, Board Member

Meet Emily...

Emily, at four and a half years old was a shy, quiet little girl who loved to dance. Her dance teacher noticed that she had a difficult time lifting her arms in ballet class. Emily had been having joint pain, cold-like symptoms, become lethargic and was running a low grade fever. The symptoms persisted over a three month period without a clear diagnosis despite numerous doctor visits. Frustrated during one visit Emily’s mother Michelle told the doctor, “I am not leaving until you tell me what is wrong with my daughter.”

The next morning they went to Lucille Packard Children’s Hospital at Stanford to the pediatric rheumatoid arthritis clinic as this was the initial diagnosis. The family prepared for a simple check-up with the hope that life would return to normal. Cancer, which was not in Michelle’s realm of possibilities, was the new diagnosis. The doctor said that he wanted to do a bone aspiration to be sure. The 30 minute test, Michelle said, “Were the longest moments of my life.”

In one doctor’s visit their lives changed forever. One minute Michelle was thinking of visiting her mom in Los Angeles or what was for dinner and the next her mind was a whirlwind of questions, worries and details she couldn’t begin to fathom. Emily’s first thirty day cancer treatment began that very day.

Eight years later, Emily is cancer free. While her marriage didn’t survive the ordeal, Michelle shared that her family and circle of supportive friends are stronger than ever. Michelle said, “I look back and I think that was someone else. I was in complete survival mode.”

While the cancer is gone, this family is forever dealing with the aftermath. Families facing pediatric cancer need strong support from families, friends, and the community at-large. Education and the willingness to be present in the face of things that scare us are the keystones to support.