Stories about little ones being diagnosed with the dreaded “C” word disease will be added to this page as they are given to us. Not everyone wants to “go there” and be forced to recall the moment he or she got his or her child’s diagnosis. But, there are some who see the value in sharing what it was like and how they coped.
If you’d like to share your story, please email [email protected]
I am one of those who decided to share my story… the good the bad and the ugly? No, it was more like the bad the worse and the end. But, let’s not get ahead of ourselves here.
My son was diagnosed at age three. His ALL (leukemia) did not manifest itself in the normal way. So it took the doctors more than a month to figure out what was wrong. He had been complaining of leg pain and had flulike symptoms for a few weeks and then all of sudden he was noticeably anemic. Really anemic — so much so that his hands looked like wax and he didn’t any color under his eyelids. We made it through though and he spent the first 27 months in a good remission. We were lucky to live near Seattle Children’s Hospital so he was only in-patient twice throughout his entire five and a half years on treatment.
He relapsed three times all while on treatment. His was a very aggressive disease even though it was the most common and the one the researchers have had the most luck with. Didn’t do us any good though.
We got along fairly well with the health care professionals who cared for him but let’s just get one thing straight up front….they are not Gods. They are people doing their jobs in their chosen fields. Do not give all your power to them. Get yourself organized… do your research and please do not go straight to the internet — you won’t always get the most uptodate information there. The point is to educate yourself and you will be the best advocate for your child.
Don’t forget to parent the patient and don’t ignore the siblings. The siblings really suffer. The ill child knows what is going on and why he or she is getting all the attention but the siblilngs are completely left out…left behind and they are sad…frightened…confused…and hurting too. Cancer is a family disease so don’t leave any part of your family out. That is all the advice I have for now. More later. Shirley E