Going through my pictures last night and hearing the words “she doesn’t look sick” today at Costco reminded me how insensitive our society can be. Just like adults, children lose their hair, eyebrows and eyelashes during treatment. Childhood leukemia treatment for girls ranges from 2.5-3 years and boys 3.5-4 years. These numbers are all contingent on reaching an early remission. Ariana had 8 months of intravenous aggressive chemotherapy and since then has been taking oral chemotherapy, steroids and every three months, a lumbar puncture in combination with intravenous chemotherapy. For the first 9 months, Ariana lost the hair on her head, grew some hair and then lost her eyelashes, eyebrows and little fuzz that had grown. I never thought her hair falling out would impact me the way it did. In the grand scheme of things it is just hair but to me it made this nightmare my new reality. Luckily,  at that time she was 19 months and could care less about her hair.

Last May, Ariana and I started going to the grocery store together early in the mornings. Per doctors orders, she wore a mask out to protect her from other peoples germs. While in line the man in front of me said  “ That sure is an interesting hair style for your daughter”. Normally I would ignore such a comment and not respond but I lashed out and replied “ She has CANCER”. The man did not know what to say and he paid his groceries and couldn’t even look at me. Those words had never came out of my mouth. Hearing them come out of your mouth hurts like hell. Maybe if our society was more informed about the reality that is childhood cancer people would think twice before staring or making witty comments.

During maintenance the patients hair starts to grow and they start to look like other kids their age. Sadly, our little warriors are taking chemo every night and they are immunocompromised. We all have hectic lives and sometimes the demands of work are very high, but please think twice before sending your sick child to school. Unless you are a very involved parent chances are you do not know all the kids in your child’s class and any one of the kids could be in treatment for cancer. If you think a viral or bacterial infection is a nightmare for you, you have no idea what it means to our kids. I can not tell you how many times we have had to run to the emergency room because of a fever and been hospitalized for days. It is a complete nightmare for the child and the parent who is terrified that their child could potentially die. For instance, Ariana caught a cold last December and because she was neutropenic, the cold turned into pneumonia over night. We rushed her to the emergency room and she was put on 3 different antibiotics and we were admitted for a week. We learned that she is allergic to vancomycin and she needs to be pre-medicated and it has to be administer over 3.5 hours. We can not keep our kids in a bubble for the rest of their lives and we have to let them live in the real world.