Talking through tough times
When cancer strikes a young child, it's devastating.
"You do a lot of crying the first week," said Anne Pedersen. "Then you get busy."
And, if you're lucky, you find a support group that understands what it means to have a young child with cancer.
Five-year-old Paige Pedersen of Cottage Grove was diagnosed with ALL, or acute lymphoblastic leukemia, in fall of 2008. A year earlier, 4-year-old Ella Anderson of Woodbury was diagnosed with the same form of cancer. Then 2-and-a-half-year-old Nash Hutton of Oakdale and, finally, 3-year-old Jacie Strander of Burnsville, were diagnosed with the disease.
The mothers of these four children meet informally once a month for coffee. They also e-mail and call throughout the month to touch base and assure each other that their child's chemotherapy treatment is progressing normally.
They say their friendship will last forever.
Martha Anderson said the group is important because, while friends and family are a great support, most of them haven't experienced having a young child with cancer. They don't always know how to talk about it.
"With each other, we're open and it's OK," she said.
Anne Pedersen said having three other women who have been through it or are going through it is important. "We're all at different stages, we can reassure each other -- 'that happened to me,'" she said.
Soon after Jacie Strander was diagnosed, her mother Heidi, a teacher at Armstrong Elementary School in Cottage Grove, received a call from Anderson and the fourth mother, Kelley Hutton. "Their children had already been diagnosed and were in treatment," Strander said. "They answered a lot of questions and tried to ease the fears and worries my husband and I had."
This summer, Strander's daughter was hospitalized. "Within 20 minutes of Jacie being admitted, all three called," Heidi said. "I realized how important these women are to me. They will forever be a part of our lives."
Another level of connection that got them through rough times was the CaringBridge Web site, Strander said. The stories of all four children and their families are on the site. The four moms journal all the time, she said. "It's a great place to receive reassurance. It's been key for all of us; that's what connected us all, a way for us to get to know each other."
Strander said whenever she adds an update to the Web site, it automatically alerts anyone following Jacie's journey. "That's good, because we're not on the phone all the time."
For Kelley Hutton, dealing with the initial diagnosis was extremely tough. "But I had Martha Anderson to help me get through some things. Martha and I have worked together for the past 13 years, so we already had a strong relationship; this brought us even closer."
"You never think that it will happen to you or your child," Hutton said. "It was devastating.
"After the diagnosis, we spent five days in the hospital. After getting home, it was exhausting with all of the new medications Nash had to take. The steroids were the worst part of it. I had to hide the steroid pills in his food, which was challenging because they taste so awful.
"Then with the steroids came the moodiness, extreme highs and lows, and the non-stop eating. We went into the clinic three to four times a week at the beginning to check his blood, get blood transfusions and chemotherapy," Hutton said.
"What helped my family through the first six months, was support from my mom and brother, a close friend from work who brought us dinner once a week, and receiving reassuring messages from people that signed our CaringBridge page.
"The informal mom's group helps because we all have the same thing in common, and we truly understand what each is going through. No one else knows what it feels like," Hutton said.
Hard on families
Acute lymphoblastic leukemia is a cancer of the white blood cells. "It's one of the more curable cancers," Anne Pedersen said. "The research is so good now that the success rate is 85 to 90 percent."
The treatment is hard on the patient as well as the family. In all four cases, once the diagnosis was determined, the kids were admitted immediately to Children's Hospital in St. Paul.
"In the first six days, doctors do bone marrow surgery and a spinal tap and they insert a port-a-cath in the upper chest," Pedersen said. "For the next month, the kids are on a steroid treatment which leads quickly to remission. Then they move to the maintenance stage. We go to the clinic for treatment once a month, a spinal tap quarterly and chemo pills every day. It's taken over our life.
"Paige will be on chemo pills until February 2011 and will go to an oncologist until she's 18," Pedersen said. The treatment for girls runs two years and three months. For boys, it's three years, she said.
to the calendar
All four families participate in larger support organizations including HopeKids, the Make a Wish Foundation and Miracles of Mitch.
HopeKids is based in Arizona with about 500 Minnesota families. "It's great because it's not just for Paige, it's for the whole family," Pedersen said. "With a calendar full of clinic appointments, the HopeKids events give the family something to look forward to, when we can forget about doctors and treatments."
The family, which includes two older daughters, attends all sorts of activities sponsored by HopeKids, Pedersen said. Some are just for fun like Twins games, rock climbing, concerts, Ice Capades and some are to help raise money for research, like fundraising walks.
For the Strander family, which has two older sons, HopeKids events give the whole family a sense of release, Heidi said. "It's fun and gives us some extra time together."
"We will always participate in the Make a Wish Walk and the HopeKids Suburban Adventure Classic Walk and Run," Strander said. "We're always looking for ways to give back. Support from the large organizations has been tremendous. The doctors at Children's Hospital are amazing; they are for you 100 percent of the time.
"I feel so thankful and blessed for Anne, Martha and Kelley," Strander said. "It's made this journey so much easier to deal with."
For the full stories of Paige, Jacie, Nash and Ella, go to the following CaringBridge addresses.
- Paige Pedersen: www.caringbridge.org/visit/paigepedersen
- Jacie Strander: www.caringbridge.org/visit/jaciestrander
- Nash Hutton: www.caringbridge.org/visit/nashhutton
- Ella Rae Anderson: www.caringbridge.org/visit/ellaraeanderson