Blog
Chasing a Vision
By Peter Yanefski, Communication and Operations Coordinator
Lucas Blomberg was born with clouded vision, he had cataracts from birth. Two years later, his bigger battle began.
In late 2018, when Lucas was 2, Amanda Blomberg saw a grapefruit-sized lump on her son Lucas’s neck. Lucas underwent 3 months of tests, and it was discovered that he had Langerhans cell Histiocytosis(LCH) on his cervical bone.
After being seen and treated at St. Mary’s Hospital (with some virtual consultation by Dr. Ken McClain from Texas Children’s Hospital), Lucas finished chemo and steroids treatment the following July. That, however, wasn’t the end of his issues.
Upon removal of his port, Lucas became septic and was the sickest he had been throughout his LCH battle. Once he recovered, he faced significant struggles with his emotions, behavior and learning. His aggression was only exacerbated by his struggles with learning. He could only read a few letters at a time at the age of three.
Thinking the problem may be dyslexia, Amanda took him to see a neuropsychologist. Doctors couldn’t find any cause from LCH, although it could have been a side effect of the extensive treatment. His final diagnosis for neuropsychological problems was a combination of Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder, Dyslexia, Dysgraphia and Dyscalculia.
A laundry list of neurological disorders, and an unclear map as to which were genetic, late effects of the LCH, the treatment, or which could have even been caused by the others (i.e. dyslexia causing or exacerbating other learning disorders).
Her focus was now to get him the right education for his needs. She made sure Lucas got all the help he needed through an IEP (that stretched to more than 40 pages). To get the right accommodations, Lucas attended to three separate schools from Pre-K through second grade. She felt that each school used outdated interventions instead of the multisensory and multimodality styles of teaching that he so desperately needed.
During this time, plenty of tears blurred Amanda’s eyes, but never her vision. Now she knew where she needed to advocate. Having seen the pitfalls of the funding provided to get Lucas, and other children like him, in the proper private education systems. She needed to advocate at the state level, for any future parents in a similar scenario.
“I am NOW the Advocate I needed in school.”
Amanda Blomberg
Amanda knew Lucas could have had a quicker path to the right education if his issues had been caught earlier. With no one to relate to in the wrong classrooms, the district blind to his issues, Lucas felt alone.
This past November, Amanda had the incredible opportunity to travel to the Florida State Capitol, where she met with Representatives, Senators, and the head of Florida’s agency for People with Disabilities.
Now, she is proposing a bill to the Florida State House of Representatives called Lucas’s Return to Learn. It would help guide other parents of children affected by cancer’s late effects or treatment side effects. It would provide a clear pathway with neuropsychological evaluation, rapid staff training when a child in a classroom has undergone cancer treatments, and recognizing the “leftovers” that those treatments may have on a growing brain.
Her goal is to stop putting the blame on parents or labeling children as “bad.” To instead provide multisensory instruction, therapy, and services.
The initiative has some strong supporters, such as Florida Voices for Health, and a few paths to get it passed. One of the alternate paths is to get it attached to Bill 7039, which currently addresses dyslexia and visual impairment.
She has come a long way, but the end is not in sight yet. Getting bills passed in the legislature is a process that may take years. She knows it will be worth it for any progress to take place. Once established in the state of Florida, she wants to advocate for national adoption of these types of changes. As she said:
“…so families who have already fought for their child’s life don’t have to fight for years for educational civil rights. Ideally, all schools would use multisensory, multimodal instruction, as evidence shows it benefits all learners.”
And she’s no stranger to educational accommodations. Both Amanda and her husband had IEPs when they were growing up. Instead of just the default setting of trusting experts, which left their son 2-3 years behind, she now learned how to be the advocate that she needed when she was in school.
Lucas is now 8 years old. He can see well with glasses but is legally blind without them. He uses a keyboard with larger print, a magnifier, and other assistive technology for small print. He has low-muscle tone, GI issues and dental damage remaining from the chemo treatments.
He’s finally found the right school, and Amanda was able to get $20,000 in state funding, after she discovered the errors in the information the state had from his testing.
But her battle is not over.
In the same way Lucas has fought his disease as a histio warrior, Amanda is fighting to provide improvements for post-cancer children. Now in Florida, and maybe eventually taking that vision of a better education experience for child cancer survivors country-wide.
If you are a parent of a childhood cancer survivor and in a similar situation, Amanda would love your help in her battle for post-treatment education. Contact Amanda on the Light for Lucas a Journey of Langerhans Cell Histiocytosis page to share your story or to get the blueprint to establish a similar bill in your state.