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Coping With Your Child's Cancer: Liz Scott's Story
In 1997, Liz Scott's 1-year-old daughter Alexandra was diagnosed with neuroblastoma, a rare childhood cancer that develops in nerve cells.
When Alex was 4 years old, she opened a lemonade stand to raise money to help "her doctors" find a cure for her cancer. The response was overwhelming, and she raised $2,000 in just a day. As Alex fought cancer over the next 4 years, she raised millions of dollars for pediatric cancer research and clinics across the country. The effort ultimately inspired millions of other kids to open lemonade stands of their own to raise money for the cause.
Although Alex lost her battle with cancer at age 8 in 2004, her family has continued her legacy with Alex's Lemonade Stand Foundation for Childhood Cancer Research. The foundation has raised more than $25 million to fund childhood cancer research.
Below, Liz Scott talks to KidsHealth.org about how she coped with her daughter's illness and what helped her get through the most difficult times.
When did you learn that your daughter had cancer?
It was just a few days before Alex's first birthday. She had been acting different — not sleeping much and seeming uncomfortable during the day. After having just gone through a normal first year with my older son, something didn't seem right to me. We went to our family doctor several times, who told us that Alex's blood tests were normal and everything was fine. But I still had this nagging feeling that something was wrong. After one particularly bad weekend with Alex feeling sick, we called the doctor again and got the doctor on call. His concern prompted us to take Alex to the emergency room.
Once we got to the ER, the doctors found that her reflexes weren't working properly. They didn't say it right away, but they knew something was wrong. After monitoring her, a neurologist thought there might be something growing on her spinal column. They did an MRI and saw that she had a tumor — which was later found to be cancerous — on the spine. Alex had surgery the next day and then started with chemotherapy treatments.
Sounds like you did the right thing to trust your instincts and keep after the doctor.
Absolutely. As a parent, you're used to always worrying about something, and sometimes you're just over-worrying. But if a feeling persists, and your child is not getting better, you should pursue it with the doctor or, if you need to, go to another doctor for a second opinion. You have to trust your gut.
Once the realization about Alex's diagnosis set in, how did you feel?
Well, at first, it was completely overwhelming. I panicked about everything and wondered whether she'd survive, whether she'd make it through the procedure, and how my husband and I would be able to take care of our other kids.
Then, after her first surgery, we got more devastating news: The doctors said that Alex was paralyzed. At that point I thought, "I honestly can't do this." I wanted to crumble and not be there anymore. What helped me fight that feeling was that I remembered volunteering at a telethon years before and seeing a family who had a sick child, and just admiring how strong they were. I thought, "Who do I want to be? Do I want to be the kind of person who faces my fears head-on and tries to be the best person I can be? Or am I going to let this defeat me before it's even started?" I chose the first option. This all sounds very basic, but it's true. And it helped me to be stronger for my family.
During that time, did you draw strength from any other places?
We were very fortunate to have our family members near us, so we had a lot of support. And it helped to know that when we couldn't be with our sons, they were still in good hands.
We also had a lot of friends offer to help out. At first my instinct was to say, "No, I can handle this on my own," but I quickly realized that people actually wanted to help. It made them feel good and useful. So I let them and it really was for the best. Now I always tell parents who are going through this to take help when people offer it. If you accept offers from others to clean the house or run some errands for you, it ultimately lets you have more time to focus on your child.
Once your family started to adjust to this new reality, did things get a little easier?
Well, in the beginning my husband and I were exhausted all the time and getting little sleep. But as things progressed, we got into a groove and were able to work together as a team. For example, we visited the hospital in shifts so that neither of us was there 24 hours a day for weeks on end. This helped a lot.
A lot of people also pushed me to join support groups. In the first few weeks, I wasn't interested in doing that — because I wasn't emotionally ready. But as I got into the routine of regularly going to the hospital, I made friends with other parents and it did help me to feel a little better or, at least, like we weren't all alone in this.
Some parents prefer not to have much contact with other parents, as they'd rather deal with things privately. But others do want to hear from you. Doctors, child life specialists, or social workers at the hospital can help parents connect.
During this time, how did you care for your other children? How much did you share with them about what was going on?
We really tried to follow their leads in terms of what they wanted to know. So we didn't exclude them from the treatment and anything involving Alex, but we didn't include them when they didn't want to be included.
Since my husband and I were alternating shifts at the hospital (one of us would be there at night, and another during the day), we both had the chance to be there for our sons at home — to try to maintain some sense of normalcy. Whenever possible, we'd also eat together as a family, even if that meant eating dinner at the hospital with Alex.
All that said, while Alex was getting treatment, my two sons spent quite a bit of time with their grandparents. There were also times when we traveled for treatment far from home to another city. When this happened, we would do a little sightseeing or visit a zoo or museum to make it feel sort of like a trip. And when Alex was feeling up to it, she would come along, too. This helped a lot. It was nice — for all of us — to do something distracting. I always tell other parents to take breaks and live your life. It helps you recharge.
When it came time to talk about what was going on with Alex, what did you tell the kids?
For my sons, we were always honest with them when answering their questions, though we never went to the point of explaining the terminal nature of Alex's illness. There were times when — if someone was dying of cancer — they had some inkling that this was a possibility for her. And they may have wondered about that.
In terms of how much to tell Alex, we shared what we felt she needed to know. This varies dramatically between kids, depending on the age and the type of cancer a child has. We wanted to be the ones who told Alex vital information because we wanted to have control of the message. We wanted to share the news in a hopeful way. If we were going to a new hospital for a new treatment, we would tell her that no other treatments had worked and she still had the cancer. Then we'd say that at this new place the doctors are really good at doing research and finding new medicines.
Did you sometimes have difficulty answering her questions?
Most of Alex's questions were pretty straightforward. She'd want to know: "What do I have to do? Will it hurt? Am I going to be sick? Am I going to have to stay over in the hospital?" I always answered those questions honestly. If I didn't know the answer, I would ask someone in front of her because I wanted her to know that I was giving her good information. The doctors and child life specialists at the hospital are really good at telling kids what to expect, even when the kids are very young.
Knowing exactly what to expect during treatment and afterward helped Alex — and all of us, really — feel a little less anxious and more like, "OK, I can do this."
Learning about her illness also helped. We did a considerable amount of research by reading books and magazines and going online. But we were careful about what we read: Not everything out there is accurate. If you read too much, especially too much of the wrong things, you can drive yourself crazy wondering whether you're doing the right thing or whether you should be doing something else.
It sounds like educating your family and finding out all that you could about Alex's cancer helped you feel more at ease. Did anything else help?
It always feels good to do something that makes you feel like you're taking control of a situation. That's part of what makes this cancer so scary because you often feel helpless.
When Alex was 4 years old, she held her first lemonade stand. She told me that she wanted to give the money to her doctors to help them find a cure for her cancer. We expected 5 to 10 kids to show up — we didn't expect to see the outpouring of support that we got.
She raised a lot that day, but whether she had raised $10 or $1,000, I think that just the act of talking to people about it and having them learn about the disease was just a really positive way for us to move forward. It gave us the feeling that something really could be done, that we really could make a difference in our daughter's life.
It also gave Alex a deep sense of empowerment and hopefulness. Her spirit helped to carry all of us through those difficult times — and still continues to today.
Your story is very inspiring. What do you say to others who are going through the same challenges?
Well, I tell them to take it one day at a time. In the beginning, it's a matter of taking it one hour at a time. That's just the way you get through it.
Nowadays, childhood cancer has more than a 70% cure rate. Even with more deadly cancers, like neuroblastoma, children do survive. There is always hope and each day we are moving closer to finding cures for all children with cancer. There's always help, and there's always hope to hold onto — which helps you move forward.
Reviewed by: Steven Dowshen, MD