Milestones missed

MARSHALL – Becky Swanson of Marshall was prepared for the changes to her household in April last year that a new baby brings. She wasn’t prepared for a catastrophic illness to suddenly befall her 9-year-old daughter, Rebekah. The baby was not even a week old when his sister had to be rushed to the hospital.

In April 2013, Swanson and her husband, Gregg, took Rebekah to the doctor several times in Marshall before a blood test revealed acute lymphoblastic leukemia – blood cancer – and she needed to be rushed to Sanford Children’s Hospital in Sioux Falls, S.D.

Swanson was told this type of cancer was 100 percent curable. Chemotherapy was started immediately. With acute leukemia there is an increase in abnormal, malignant cells called “blasts.”

Her blast number was zero after the third day of treatment.

“We all thought, ‘Yes! That means we will be able to get out of the hospital in less than two weeks,'” Swanson said.

But Rebekah developed an auto-immune disease that resisted treatment.

“Her body was eating itself,” Swanson said.

“One week turned into two weeks. Then two weeks turned into four weeks,” Swanson said of Rebekah’s initial hospital stay. “As a parent, I felt so helpless. I couldn’t give Rebekah answers as to why this was happening or when things would turn around so she could go home.”

Rebekah was never the norm; the treatment was supposed to work, Swanson said.

“Rebekah hated the treatments, but I never let her feel sorry for herself,” she said. “I took her around to see other children. I showed her a nine-month-old who was alone.”

Rebekah was never left alone. Swanson was by her side the whole time. Sometimes Rebekah had her new baby brother, Ryder, in the hospital room and she was able to be a big sister and other times family members took care of him.

“I let everybody take over,” she said. “Mom taught school, but she left. My sister from Michigan, she stayed for a week. Friends in town took the baby. I needed to be able to focus on her.”

She took eight weeks off for maternity leave from her managerial position at Schwan Food Co.

“Schwan’s was wonderful,” she said.

After the family leave was up, Swanson was able to work from the hospital or her home before she was able to come back full time.

“There was never a question,” she said. “It was a great relief. It was one less thing. I had 100 percent support, even after Rebekah passed away. They said, ‘if there’s a day you feel you can’t be here just take it.’ I am very fortunate.”

Still a child, still growing, Rebekah would resist the treatments and act out against the medical staff and her mother. For Swanson, it was hard to know when to discipline her, when to push, when to give in.

Her older brothers, Rusty and Riley, sometimes resented the attention Rebekah was getting. Rebekah would say, give them a port and I’ll gladly do dishes, Swanson said.

A port is an implanted device used to receive chemotherapy, inserted on the chest.

“Rebekah struggled every time we went with having to get her port accessed to receive treatment,” Swanson said. “I learned that even though she is going through something no child should have to deal with, she still could not act out and be mean to other people. It was hard for me at first because I didn’t want to discipline her or correct her, but I also didn’t want her to treat those who were there to help her the way she was. I told her that I didn’t understand the pain or what it felt like, but I was not going to accept her behavior. I always followed that up by making sure that she knew how much I loved her.

Along with the challenge of when and how to discipline a child who is undergoing a terrible illness, Swanson had to struggle to make life as normal as possible for Rebekah.

“Becca was able to start school in the fall, which was something that was so important to her.” Carlson said. “She would only miss on the days that we had to go to Sioux Falls for treatment. I learned just what a strong little girl we had. As the weeks went on, Rebekah’s numbers started to improve and I can remember the day her number was finally in the normal range. I went right over to school and let her know that she could now play things at recess just like the other kids. But the most important thing for Rebekah was that it meant that she could play volleyball.

“We had a few setbacks and her numbers started to drop again. The doctor advised me that she shouldn’t try and play volleyball as she could get injured and they were worried. This was again a learning experience for me. I explained to the doctor that being able to play volleyball was something that pushed Rebekah and there was no way I was going to tell her that she could not play. I told him that we would be careful, but there was just no way I could take that away from her. She had an awesome season and as she would say finally she felt like a normal 9 year-old.”

But Rebekah was three weeks from entering a new stage of her treatment – maintenance – when she started to decline. She died Feb. 15, 2014, at the age of 10.

Swanson said she’ll look at Rebekah’s classmates at Samuel Lutheran as they grow and think of how her daughter should be hitting the same milestones.

“I have accepted it, but it doesn’t mean I don’t struggle with it every day,” she said. “I look at kids outside in the summer…”