Below is an essay I wrote as we approached Chai Elul 2011. Someone had told me that I was using my son's death as an excuse for many things. I wrote this as a response to give a tiny glimpse into my life. This year, Chai Elul begins on the same English date as the original diagnoses, Sept 20, 1997. The day my world was turned upside down, and it has never been righted since.
September is National Childhood Cancer Awareness month. Which is sort of an oxymoron, given that childhood cancer research gets barely any money or attention. September is also the month in which my son was diagnosed with leukemia in 1997. I would like to share my thoughts on what it is.
What is Childhood Cancer?
Childhood cancer is not the smiling happy kids you see in the St. Jude's commercials. Childhood cancer is sitting in the doctors office, and hearing, "You have one very sick little boy."
It's driving down the major medical center on Shabbos with your husband screaming he is going to sue the doctor for freaking us out because he can't believe they can diagnose leukemia that fast. (Yes, they can. It is a simple blood test.)
Childhood cancer is signing consent forms that tell you how dangerous the treatment. It's the Ped-Onc telling you if you don't sign them your child will die.
Childhood cancer is sitting in the clinic, your new world, where the nurses put on double gloves that are super thick because the chemo is so toxic.
Childhood cancer is your child barfing and barfing because no one gave you a prescription for zofran. ("Whoops, we forgot. Sorry.")
Childhood cancer is having your child go out in a mask because their counts are going to fall.
Childhood cancer is planning your events around your child's counts.
Childhood cancer is spending holidays in the hospital because your child's count have dropped or the developed a fever. (A fever over 101.4 is automatic admission.)
Childhood cancer is getting a call from your father-in-law that your son is screaming in pain and the resident won't do anything.
Childhood cancer is facing your worst fears every day.
Childhood cancer is hearing the words that your child has relapsed.
Childhood cancer is spending hours researching which facility has the best numbers in dealing with a child who was supposedly cured 9 months before.
Childhood cancer is leaving your friends and family and flying to a new city where you know no one but finding you do have friends there.
Childhood cancer is not leaving your child's room for two weeks because you are scared he could die at any minute.
Childhood cancer is climbing into bed and trying to get enough hugs and kisses in to last a life time.
Childhood cancer is making the decision to turn off the medication that is barely keeping your son's heart beating.
Childhood cancer is watching your child's heart slowly stop pumping blood and hearing the resident pronounce him dead.
Childhood cancer is burying your child.
Childhood cancer is prying your husband away from the grave because he never wants to leave.
Childhood cancer is waking up every single day and knowing that you have lost a big part of you.
Childhood cancer is meeting other parents who have also lost children in a similar way but feeling that they suffered so much more than you did.
Childhood cancer is having friends whose kids made it, but continue to suffer with long term effects, such as learning disabilities, infertility, health problems, and secondary (and sometimes third) cancers.
Childhood cancer is feeling alone because it seems that no one cares enough to really find a true cure for our kids that are not toxic.
