There are at least 100 young people and their families on Dr. Mary Jo Kupst's caseload who rely on her and a team of psychosocial professionals for advice, consultation and guidance as they deal with the multitude of issues related to coping with childhood cancer.

First there are the new kids who have just found out from their pediatrician that there is a problem and later confirmation from an oncologist that they have, indeed, cancer. These new patients - and their families - are seen by members of the team to provide the most immediate and regular attention.

Next are the patients who have progressed well enough where they may only need to see the multi-disciplinary support team every couple of months or so, or on an as-needed basis.

Then there is another group who have graduated to that special plateau known as "long-term survivor." This is an area of keen interest to Mary Jo Kupst, PhD, who has been helping children and families cope with pediatric cancer for over 30 years, the past 15 as Psychologist at the Midwest Children's Cancer Center and Professor of Pediatrics at the Medical College of Wisconsin.

"Clinically, little has changed since I started here," Dr. Kupst said. "Our psychosocial team works very closely with children and their families from the moment of the diagnosis, through treatment and after treatment. What has changed is that we now have a long-term follow-up clinic in the Midwest Children's Cancer Center at Children's Hospital of Wisconsin.

"Now, when children have finished treatment they are invited back to a clinic where the multi-disciplinary team looks at different aspects of their lives - nutrition, psychological-social needs, school work, vocational issues - all the different types of things that can by affected by the treatment they had.

"Sometimes you don't see these things right away and they show up years later. So it's very important to follow up with them."

One project, partially funded by the MACC Fund, followed children prior to their bone marrow transplant and then followed them one to two years later after the procedure.

"We were looking to see if cognitive function changed because to the treatment," Dr. Kupst said. "What we found was encouraging. Their IQ - their cognitive functioning - was stable. We didn't see any decreases in cognitive or psychosocial functioning at two years post-BMT.

"What we took from this was the importance of seeing these children and adolescents early, determining who might be at risk, and getting a plan to help with coping."

This led to Dr. Kupst and Kristin M. Bingen, PhD, Assistant Professor of Pediatrics, to look at even longer-term functioning and what happens three to five years after treatment.

"Our next project is going to be a five-year follow-up," Dr. Kupst said. "Are there any late effects or issues that have shown up?"

On the front end, when a child is diagnosed with cancer, treatment protocols are pretty well established, but there continue to be changes in aspects of treatment.

"Certainly, we've advanced with our research," Dr. Kupst said. "We can predict better who's more at risk. Research is also the key to making a difference and impacts how we practice. Clinically, our main thing is to help the child and their families cope with many different things they need to deal with through the treatment process."

The psychosocial "team" meets weekly - or earlier if needed - to review all the new patients and those on the HOT unit. Plans are developed and next steps tailored to meet their needs.

This special team is comprised of members from psychology, social work, education, nursing, chaplaincy, child life and hematology/oncology. In the late 1970s and early 1980s, children with Acute Lymphocytic Leukemia (ALL), the most common form or cancer, had a survival rate of 50% to 60%. Today it's in the 80% range.

"Yes, the survival rate for ALL has grown significantly, along with some other cancers," Dr. Kupst said. "Still, there's a lot of work to do. There's that percentage of children who are high risk for not surviving or having really serious long term complications."

Those who do survive or deemed "cancer free" after five to 10 years of treatment are strongly encouraged to keep up with their medical follow-up to continue to check on all organ systems.

"The best thing for me is when I see young people coming back and seeing them going to college, getting married, having children, they've moved on with their lives and they're healthy," Dr. Kupst said. "The worst part, you can guess. The fact is cancer hasn't been cured and children still die."

Many of the young survivors Dr. Kupst has known and talked to over the years view that time of their life as "I used to have leukemia. That's ancient history."

There are some positives to having experienced cancer first-hand, noted Dr. Kupst.

"Even though you would never wish this on anybody, there are some positive things that may have happened," she said. "It may have gotten you closer to your family. It may have helped you realize what's most important in life. It may have given you some direction you might not have ever explored.

"Some former patients have gone into the health care field, and some want to be nurses or pediatric oncologists. They want to help other children who went through what they went through. They sometimes tell another child with cancer, 'I've been through it. Look at me. You can get through it, too.' That means quite a lot.

"Still, you never forget you had cancer. It does change a person. Even though you're not coming back for treatment, there are reminders of the past. It's been a part of your life and probably always will be."