Hope, Strength, and Healing for families coping with a child cancer diagnosis

The first 29 days of Anabelle’s treatment were brutal

Life was going accordingly for the Nguyen family as 3 year old Anabelle was taking ballet lessons, enjoying time with her younger sister, Allyson, while her parents were preparing for their third child on the way. She was looking forward to starting preschool that year. In fact, it was when Anabelle’s parents, Kieu and Liem, were registering Anabelle to start preschool in the fall when they learned they needed an up to date physical. The physical revealed an abnormal hemoglobin number, and so her pediatrician wanted to follow up with some blood work. Anabelle’s white blood cell counts came back high; therefore, Anabelle was referred to an oncologist. On March 22nd, 2017 Anabelle’s parents were shared the devastating news that Anabelle had B-Cell Acute Lymphoblastic Leukemia.

The family’s entire world completely turned upside down as they all of a sudden had to become familiar with all of the medical terminology and protocols while accepting the fact that this would be their life for the next few years. At the time Anabelle was diagnosed, Kieu was going to be giving birth in just a few short weeks to her third child. The diagnosis added a lot of stress to the pregnancy and there was fear of losing the baby during this process. Fortunately, baby boy Avery was born healthy and is doing well.

The first 29 days of Anabelle’s treatment were brutal as she was taking steroids twice a day. The medicine gave her intense mood swings and at times she would hide in a corner not wanting to do anything for several hours. It was absolutely heart breaking for her parents to see Anabelle feeling this way. An especially difficult moment for Anabelle was when she began losing her hair. She loved her long, beautiful black hair, and so her parents had to have many conversations with her about this loss. Our Family Navigators had the opportunity to meet Anabelle and her family during this difficult time when they delivered the family’s Hope Chest, family care package, to them at the hospital. “The big treasure box for Anabelle when she was first diagnosed was everything. She was so happy,” shared Kieu.

While times were incredibly difficult for the Nguyen Family, Kieu and her husband, Liem, relied on each other for support as Kieu described as “being each other’s rock.” While they each put a brave face on in front of all of their children, behind closed doors there were tears. They both stayed strong for Anabelle because “she encouraged us every step of the way,” Kieu explained. The Nguyen Family feels very fortunate to have had a really good support system from numerous family members on both sides of the family, close friends, and the social workers at UC Davis Hospital.

Keaton’s Child Cancer Alliance (KCCA) has been truly honored to be a part of the family’s life during this extremely difficult journey. “Keaton’s has been by our side from the beginning of being diagnosed, and I don’t think we would have been okay without Keaton’s by our side,” shared Kieu. Our Family Navigators have developed a strong relationship with the Nguyen Family through follow-up calls and in-person gatherings. Over the course of the last two years, Family Navigators were able to identify barriers, strengths, and resources for the family. When Kieu was looking for resources to help explain Anabelle’s treatment and the purpose of the port (a device used to draw blood and give chemotherapy that stays in place over the course of treatment), our Family Navigator, Sarah Perry, provided the family with a children’s book that helps explain these matters to children. In addition, KCCA was able to provide some financial relief with a family grant and gas cards to assist with accumulated expenses.

KCCA team members have enjoyed seeing the Nguyen Family attend several free KCCA events including a family night out at Funderland, as well as a holiday celebration called Holly Jolly. “We all enjoyed our time and the opportunity to connect with other families who understand what we’ve been through,” Kieu shared after our Holly Jolly event. Another event that Kieu attended on her own was a KCCA Mom’s Paint Nite. She described the event as an “unbelievable experience because it gave me a moment to be in a room with other moms going through what I was going through. The quietness for just one moment allowed me to clear my mind of all of the stress.” KCCA is so happy that the Nguyen Family was able to receive direct peer-to-peer support by attending a variety of KCCA family events.

On June 9th, 2019, Anabelle completed her final day of treatment and she had her port removed shortly thereafter. For the time being, Anabelle will have outpatient appointments once a month with her oncologist for lab work and physicals and will be regularly monitored for the next 5 years. Removing the port was a very exciting moment for Anabelle, and she will be having an “End of Treatment” celebration soon that she is really looking forward to.

These days, Anabelle has been enjoying all of the things every 5 year old girl should be able to do. Anabelle especially likes that her mom is not telling her to “be careful with her port all of the time.” She loves playing with her siblings and having play dates with friends. When she grows up, Anabelle would like to become a YouTube star. In the fall, Anabelle will start kindergarten! Anabelle is back to her ballet lessons and is also doing gymnastics. She loves school work, Jojo Siwa, and Frozen. Recently, the family was able to take their first vacation since treatment started to visit family in Washington.

Despite the incredibly challenging time the Nguyen’s experienced during treatment, they have been true ambassadors to help spread awareness and raise funds towards pediatric cancer research thru our partnership with the Saint Baldrick’s Foundation, as well as being involved with the Big Day of Giving Campaign. Although the Nguyen Family had been dealing with their own challenges, they have played a major role in creating hope and strength by getting involved with these programs to support other families.

Anabelle’s mom, Kieu, would like to share to other families who may have just received the devastating news of their child being diagnosed with cancer: “It’s okay to cry, be angry, and feel sad. But know that your child is resilient and there is a light at the end of the tunnel.”

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