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Parents, Give Yourself Time and Grace to Adjust after Child Goes Off Therapy

Missy’s son Todd has been a cancer patient three times.

Now a high school student, he was diagnosed with Hodgkin lymphoma in 2009 when he was 6. Todd received eight weeks of chemotherapy. There was no evidence of cancer.

After therapy ended, he was officially considered a “transition” patient because he was making the transition off active treatment. Todd returned to the hospital every three months, then every four months, and then every six months for routine follow-up visits.

Three years later, an X-ray revealed spots on his chest. The cancer had returned. Then a fourth-grader, Todd had chemotherapy and radiation therapy to his chest.

A patient standing with his mother.

As parents, you will make mistakes, but the key is to keep trying and moving forward, Missy says.

Another three years went by. When Todd was in seventh grade, a PET scan found the cancer had returned. He had chemotherapy, a hematopoietic stem cell transplant (commonly known as a bone marrow transplant) and proton beam radiation therapy.

His third experience with cancer behind him, Todd remains cancer-free.

Today Todd is a sophomore in high school. An honor student, he plays percussion in his school’s band and loves to play basketball.

Cancer has brought many challenges to his family, Todd’s mother, Missy, said. But through the help of a network of family members, friends, and health care professionals, they have persevered and become stronger. Time and grace have helped, too. As parents, you will make mistakes, but the key is to keep trying and moving forward, Missy said.

Take It Slow After Cancer Therapy Ends

Each time Todd returned home after the end of treatment, he wanted to jump right back into his previous routines. But his energy and immune system weren’t quite ready.

When Todd returned to school, he had little physical strength. Even walking made him exhausted. In 1st grade, he needed a nap every day after lunch. There were several trips to the doctor. His strength needed to rebuild. His parents’ natural tendency as parents was to protect their son.

“He would get upset with us. We were leery of him doing a lot of things. He thought we were overprotective,” Missy said.

Later they decided to give Todd freedom to make decisions. “Our approach was not to tell him no, but to allow him to see for himself,” Missy said. “Try it out and see.”

In ninth grade, Todd wanted to try out for the football team. After a while, he realized he couldn’t keep up physically. He made the decision not to continue.

But Todd loved sports and wanted to stay active. His parents put up a basketball goal at home so he could play when he felt like it. Now he plays basketball in gym everyday.

When Todd started playing percussion in the school band, the band director made adjustments to allow for Todd’s fatigue. During his freshman year, Todd stayed in one place when the band performed on the football field.

Later he played the marimba and the drums and moved from instrument to instrument.

He now marches in parades. But it took him a good year to get to that point.

Academic Challenges

Time away from school and the long-term fatigue Todd experienced made it challenging to keep up with school.

Because Todd took naps every day after lunch in first grade, he missed reading and language arts portion of the day. The family hired a tutor who worked with Todd twice a week to help him.

In fourth grade, he missed about 60 days of school during the second semester. He was absent during lessons on division and equations.

Teachers sent packets for him to work on. The family also hired a tutor to help Todd with math, particularly division.

In seventh grade, he missed more than 60 days of school. Todd had a line infection and an allergic reaction to chemo. He was in the intensive care unit (ICU) for a week.

When Todd entered the eighth grade, the family decided to select a less demanding academic schedule to allow him to catch up. Todd took advanced classes instead of continuing on with the gifted curriculum.

Now in 10th grade, he is taking some dual enrollment course that allow him to earn college credits.

Caring for Siblings

Managing family life was a challenge to say the least, Missy said.

During Todd’s first round of cancer treatment, he got chemotherapy every Friday for eight weeks. His father, Chris, worked offshore in the Gulf of Mexico for two weeks at a time, with two weeks off in between. Todd’s older brother, Daniel, could travel to the hospital with Missy and Todd because treatments were during the summer.

During his second diagnosis, Todd received three months of chemotherapy followed by three and a half weeks of radiation therapy. Todd and Missy left home on a Sunday so Todd could get chemo on Monday and go home to Louisiana on Tuesday or Wednesday.

During this time, Chris was working in Mozambique. Missy’s father, Stan, moved into the family home to keep things as normal as possible for Daniel, who was then in eighth grade. Todd’s radiation treatments happened during the summer, so Daniel traveled to the hospital with his mother and brother.

During his third treatment, Todd spent a long period of time in the hospital because he had a transplant. Missy’s father moved back in to the family home. At this time, Daniel was a junior in high school.

With so much upheaval, Missy remembers feeling guilty about leaving Daniel behind.

“He could be in his environment in his house and his toys and his gaming. He understood why we had to go, but we were still leaving him,” Missy said. “He was concerned about his brother. Mom wasn’t here. Dad wasn’t here. For me as a parent, I felt guilty. I missed milestones. I missed his spring concert, award days at school. You do feel guilty. I knew there was nothing I could do about it. I talked to him before and said how proud I was of him. I would tell him to call afterward to tell me all about it.”

Parenting Challenges After Therapy

Missy found that some habits and routines that were OK while Todd was having treatment had to end once the family was back at home.

“We were told in the beginning not to treat Todd like he was sick – treat him like a normal kid,” Missy said. “If you wouldn’t allow them to get away with something before, don’t let them get away with it now. We did better than some people, but we didn’t do our best.”

Food was the hardest. When Todd was sick and didn’t want to eat, Missy was happy when he would eat anything. They ate Mexican food five times a week.

“When they’re sick you want them to eat. After we were home, he felt entitled to pick whatever he wanted to eat. He thought he called the shots,” Missy said.

Todd had to adjust to not being the sick kid anymore. Missy needed to focus more attention on Daniel. She wanted to reconnect to the community again. Missy and her husband needed time together as a couple.

Through the help of family, friends, and counseling, the family was able to rebuild their lives, Missy said.

“You have to find a balance. It’s hard to get it right, but eventually things get back to normal.”