A young girl’s cancer journey: part 2

Welling with tears Sharon Oderwald said, “Sometime I feel like I’ve lost her,” and husband Tom Oderwald agreed as he pushed back his own sorrowful emotions. “She hasn’t been herself the whole time, but this week we saw a glimpse of who she really is; a fun-loving little girl,” he said.

Violet Oderwald, 4, was diagnosed with Acute Lymphoblastic Leukemia, ALL, just weeks after her birthday, but her doctors said, if your child has leukemia, this is the one you want her to have, Sharon recalled.

Following a seizure in early August, Violet’s oncologists temporarily halted her aggressive chemotherapy treatments. Her parents near immediately recognized the difference. In this rare moment, Violet had the energy to play with her cousin. Tom and Sharon also enlisted a sitter for newborn Josephine Oderwald and took Violet to her first movie – “Winnie the Pooh.”

“Not having chemo gave her body a break,” said Sharon. “It gave us a break.”

When Violet was first diagnosed, Sharon dropped her liquid medication. “It was sticky and everywhere,” she recalled. When she called the pharmacy to refill the prescription, a new, doctor-administered prescription was required. This quickly lead to the realization that Violet was initially administered the wrong dosage; a dose ten times lower than what was prescribed.

The Oderwalds now know they can’t expect anything to proceed as planned. “Hopefully everything will go smoothly, but probably not,” said Sharon. “If there is negative, you just have to deal with it,” added Tom.

It is not always easy to remain positive, agreed the Oderwalds, but seeing healthy patients at Winthrop-University Hospital has given them continued hope. While there with Violet last month, Tom and Sharon noticed a teen-aged girl who was smiling and appeared healthy. She was in and out after a routine check-up, said Tom. Seeing patients like this girl allow them to imagine Violet with the same outcome, they said. It was a challenge to anticipate what help they would need when Violet was first diagnosed with leukemia, but friends and family were eager to assist. “Our support is great. Many people say they don’t like their mother-in-law. I love my mother-in-law,” said Sharon. “Tom’s mother is always there for us.”

Tom also recalled friends who brought over so much baked ziti it lasted a whole week. “It was great,” he said, but sometime we need help caring for Josephine or running errands.

Soon after, the Oderwalds learned of Lotsa Helping Hands, a website dedicated to caregivers who are seeking assistance. Using the site, Tom and Sharon were able to organize their needs and family offered their time in a more efficient manner. The website allowed us to get the help we needed without making 20 calls, said Tom.

Winthrop was suggested as the go-to hospital by Violet’s pediatrician and her parents could not be more thankful for this advice. “The doctors are wonderful, very responsive and always have time for you,” said Sharon. “I would call them with a non-emergency question and a doctor would immediately be on the phone reassuring me.”

The family has not yet utilized all services offered at the hospital, but at any time they have the option to work with a social worker, psychologist or participate in parent groups.

Sharon also noted music therapy and child-life specialists as great resources. A man would play a melodic tune on his guitar to calm Violet before sedation. “It calmed us, too,” she said. Additionally, the child-life specialists are trained individuals who watch Violet when Tom and Sharon need to speak privately with doctors.

In support of these psychosocial resources at The Cancer Center for Kids at Winthrop-University Hospital, Sharon Oderwald is participating in their 10th Annual 5K Family Run-Walk/Yogathon. The event takes place on Sunday, Sept. 18 at Eisenhower Park with registration starting at 7:30 a.m. For more information about the event or to donate to the cause, contact Linda Sweeney, (516) 663-9400.