Parent Testimonial

My daughter Ella was diagnosed with high risk precursor B-cell lymphoblastic leukemia (B-ALL) in 2014, when she was 18 months old. At the time of her diagnosis, we were told by her oncology team that she would have learning difficulties later in life. At the time, that did not seem important, because all we cared about was beating her cancer.

Ella beat her cancer, and five years later in 2021 she was considered cured. However, that same year, when Ella was in third grade, we started to notice that school was becoming more difficult for her. Homework took hours, and was accompanied by a lot of frustration and tears. It seemed that no matter how hard she worked, she was struggling to understand and apply what she was learning in school.

Once Ella started struggling in school, I remembered what we had been told when she was diagnosed, about having learning difficulties later in life. We reached out to her oncology team for help. Ella had neuropsychological testing that did indeed show that she had multiple learning challenges because of her treatment. Along with the testing, we were given suggestions of different accommodations that we should ask for from the school to help Ella overcome her learning difficulties.

We quickly reached out to her school to request a meeting to discuss the results of Ella’s testing. The school reluctantly agreed to the meeting. During the meeting, our requests for accommodations were met with resistance. Ella’s teacher felt that because Ella had good grades, she did not need any accommodations. Ella did have good grades, but the work that she had to put into her schoolwork to accomplish those good grades was not normal, and we had proof that she needed these accommodations. Finally, the school did agree to implement a 504 plan, which implemented all the accommodations that were suggested by the cancer center.

Now, Ella is thriving and doing well. She continues to have her 504 plan in place and the school is now incredibly supportive of both the 504 plan and Ella’s success in the classroom.

My daughter Brynlee was diagnosed with Metastatic Ewing Sarcoma in December of 2020, at the age of 4. The main tumor was in her left mandible and had grown into her skull cavity, pushing on her brain. We were then told there were small nodules on her lungs.

Due to treatment, Bryn was unable to start kindergarten. But, to our surprise, she got the go-ahead to start after Christmas, in January 2022. Which was amazing! We weren’t sure that day was going to come.

Now, today, she is a healthy second grader 2.5 years in remission. We have lucked out so far, with no physical setbacks, but this year we noticed a significant educational issue. She wasn’t able to get her work done and struggled with going to school. She did not care about it one bit.

Thankfully we had a neurological/psychological evaluation scheduled for December 2023. Brynlee was diagnosed with ADHD. She was more attention deficit, which made total sense, since she wasn’t focusing long enough to finish simple tasks given to her daily. We were told that a lot of kids get diagnosed with this after treatment. I’m not sure why, but all I can say is finding out the diagnosis and treating has been a total 180 for our daughter’s education and daily life.

We have finally found a medication that works for her and this has totally changed her life. She is now getting all school work done. She used to have to bring multiple sheets of work home on the weekends to finish. She has gone up 40 points in a matter of 2 months in reading, just from her medicine. She has gotten stronger in math, which was her most hated subject months ago. She tells me she loves school now. We just couldn’t be more proud of her.

We went from being told that she may need to repeat 2nd grade back in December, to now getting messages from her teachers about how great she’s doing and how far she has come along.

We know there are many “what ifs” for side effects that can happen down the road. All we know, is that we are grateful that she has once again fought another battle.

Thank you for reading a glimpse of our daughter’s after-cancer journey. Just know you are your child’s best advocate and listen to your intuition.