With Grace and Determination
Shauna and Craig had no idea that their lives would soon be turned upside down. In late February 2010, Shauna noticed that the belly of her very young daughter Madison seemed bigger, and so she quickly took her to the doctor. The enlarged belly turned out to be swelling in the liver and spleen caused by Acute Lymphoblastic Leukemia (ALL), a common form of childhood leukemia. Madison was diagnosed on March 1, 2010 at 18 months old. She is now about half way through her extensive treatment period which will last just over two years.
Almost from the start, Shauna
was dealing with an emergent situation, the first of several during the course of Madison’s illness. During a bone marrow aspiration to determine the type of cancer, serious complications occurred on the operating table requiring Madison to be connected to life support for a few days. Like so many other children going through cancer treatment, emergent visits to hospitals for treatment of infections were not uncommon for Madison, but later that year in December, Shauna and Craig had another big scare after Madison developed a cold and fever. Her blood counts were low resulting in low oxygen levels in the bloodstream and difficulty fighting the infection. She became sicker and sicker and was rushed into the hospital’s Intensive Care Unit. “It was so scary. We didn’t know if she would make it through this or not. Then she all of a sudden just got better!” Shauna marvels at the resiliency Madison has shown in life threatening situations, “She’s always pulled through.”
In addition to resiliency, Madison has shown a high degree of adaptability to treatment and the hospital environment. “She just loves medical stuff and knows a lot!” Madison’s ability to adapt has also helped Shauna to cope. “She’s kind of inspiring. She doesn’t understand that this (situation) isn’t normal. She doesn’t have the fear. She just kind of marches through like ‘You have to deal with this because this is the way it is!’ She gives me the strength to get through the day.”
Shauna also draws strength from the other moms who have children with cancer whom she has come to know at Dana Farber Cancer Institute where Madison is treated. “The moms band together. It’s a new community.” In addition to providing emotional support, Shauna’s interaction with the other moms keeps her own situation in perspective. “You never know what’s gonna happen. No matter how bad you have it, somebody always has things worse.”
Prior to Madison’s diagnosis with ALL, Shauna was working full-time in a dialysis center and studying full-time to become a nurse. Though a go-getter, Shauna expresses no frustration about having to put her work and education aside. She is completely focused on the care of her daughter and accepts the situation at hand with grace and determination. “There is nothing we can do and we can’t change it so you do whatever you have to do. You just address the problem of the day.” Shauna also recognizes that her training has equipped her to deal with the challenges of caring for a child with cancer. “It (nurse’s training) does help. In a weird sort of way I was meant for this job and I’m good at this job.”
Like so many families dealing with cancer, Shauna and Craig incurred new expenses associated with their daughter’s treatment while simultaneously having to adjust to a lower household income. Shauna had to stop working in order to care for Madison. Among the expenses added have been gasoline costs associated with traveling back and forth to Dana Farber as well as parking. In addition, they have incurred costs associated with repairs on their car and also uncovered medical expenses. With only Craig currently employed, the family has had to reach out to families, friends and organizations to meet their everyday living expenses in addition to the new expenses associated with Madison’s treatment. “Every month I come up short but even with bills piling up, you have to put one foot in front of the other. You have to fight!’ exclaimed Shauna.
Family Reach Foundation is one of the organizations that has come to the family’s rescue as they struggle to meet their financial obligations so necessary for maintaining the stability needed for Madison’s ongoing and successful treatment. In collaboration with pediatric oncology social workers at Dana Farber, Family Reach provided a generous grant to cover the family’s high utility bills. Just prior to Madison’s diagnosis, the family moved to a new space where they have been experiencing much higher than anticipated heating costs. Shauna was amazed and deeply grateful for the assistance provided by Family Reach. “It was awesome! I just needed it. I’m beyond thankful. I would do anything I could to give back.”
She also expressed her appreciation for the shopping spree around the holidays arranged by Family Reach Foundation in partnership with Wal-Mart Corporation. Shauna, Craig and Madison were one of several families chosen to receive a $500 gift card donated by Wal-Mart. With the gift card, Shauna and Craig purchased much needed household supplies and Christmas gifts for Madison. They were extremely grateful for this gift.
In addition to the much needed financial assistance, Shauna and Craig appreciated the heartfelt support given by Family Reach Foundation, Director of Development and Special Programs, Carla Tardif. “She (Carla) really cares. It’s not just a job for her. She really cares!”
Madison, now 2 and still in treatment, is doing well. She loves to play with all of her dolls and is very nurturing. With the weather beginning to warm up her mom reports that she now enjoys playing on the swings. She also loves to play with her daddy, Craig.
Though Shauna would rather not be in her current situation with Madison, she accepts it for what it is and makes the most of it. “This is just what happens. You have to deal with it. It’s made me a stronger person.”