I belong to an online support group comprised of parents of children with acute lymphoblastic leukemia. The other day I asked a question about Isabel's schooling. I was wondering whether or
not to keep Isabel's 504, since she is now off treatment. A 504 plan spells out the modifications and accommodations that will be needed in school.

Isabel has had a 504 since starting kindergarten. She still had over a year and a half of daily chemotherapy to go at that point. Isabel's plan had basic things like no penalties for absences, being able to leave school at the drop of a hat due to steroids/chemo side effects, strict hand washing, rapid notifications about any school illnesses, etc.

Now that she is 5 months off treatment and doing very well, I wondered if I should keep it. Isabel's immune system is back to normal, her internal chest port has been removed and she is off all medications. Within a day of asking the leukemia support group, I was flooded with wonderful reasons, great tips and excellent references to keep the 504 in place.

I am now fully prepared to sit down with the school staff and keep them up to date on what we need and want for our daughter.

I realize now that part of me just wanted to throw the 504 out, close the cancer book and be done with it. Then there is the part of me that knows that it never really ends. I can shut the book, but it will forever remain on my coffee table, much too big and awkward to slip back into my bookshelf.

By keeping this 504, I'm not inviting relapse or defining us by cancer. Rather, I am honoring the strength, resilience and creativity that got us through the long dark tunnel and out to the other side.

I'm so thankful for the invaluable internet support group. They help me both logistically and emotionally.


http://www.curesearch.org/for_parents_and_families/endtreatment/article.aspx?ArticleId=3323&StageId=4&TopicId=82&Level=1

This is the link I will be using to educate the staff about late cognitive effects. This is not an area that most educators are aware of. God willing, I'll never have to worry about it but I don't want to miss it, should they occur.