Cancer is not the same for everyone

This is in response to many people who look at me like I'm lying that my daughter has cancer or that she is on or ever had chemotherapy. Or they look at my daughter and say - she doesn't look like she has cancer or say she doesn't look like she's on chemo.

I would like to explain that there is a "stereotype" of what you "should" look like when you have cancer or are on chemo. I too was unaware and believed that cancer means you look a certain way or that chemo meant you looked a certain way. Because that's what we see.

I'd like to explain that having "cancer" does not mean you are skinny and frail. Some and maybe most do....but this is not a rule. Being on chemotherapy does not mean you throw up or you lose your hair or you become emaciated.

Haven has Ganglioneuroblastoma Cancer and ROHHAD Syndrome. This is an odd group of issues. What is more important is that she does actually have BOTH. ROHHAD Syndrome is known to have Ganglioneuroblastoma....but it's EXTREMELY rare to find a child with both. Her cancer is a known cancer but it didn't affect her the way many of the other children are affected. She has a Paraneoplastic Syndrome or ROHHAD Syndrome. The ROHHAD causes extreme weight gain (not usual with a cancer patient). Again she falls under the condition called ROHHADNET.

Her chemo - which I didn't know until January of this year - is a chemo that actually GROWS hair. She will not lose her hair on this chemo because a side effect is hair growth. Kris was actually wondering if it would work for him because her hair has gotten so thick.

There are many forms of chemo and many cancers they are used for. Sometimes one is used or many are used. Haven has been on 3 different chemos in the past year. The only chemo that made her sick was Cytoxan and we had medication to counteract the vomiting. Sometimes she would get sick but 99% of the time it just made her tired for about a day.

Some chemos aren't even used for cancer. A low dose of Cyclosporin is sometimes used for Psoriasis. Which seems crazy to me....but hey it worked on someone and now they use it.

Anyway, learning about cancers and chemos has confirmed my belief that you don't judge a book by it's cover and you don't assume everyone reacts to a disease or treatment the same way.