Age: Forever ^^13^^
Acute Myeloid Leukemia
Part of the outreach that Little Fighters Cancer Trust does is to ask parents about their and their child’s experience with cancer so that we and others can better understand what cancer does to the child and the rest of the family. The more we know, the better we can help….
The following was written by Neeshay Payne’s mother, Nazley Payne, in response to such a request from us….
This post is in remembrance and in honour of Neeshay, who got her angel wings too soon…
Sooooo… let’s see!
How does cancer affect a child??????
My version …
From the word go, the child’s life changes instantly! Our kids are forced to grow up so quickly, to become “grownup” in order to cope with this dreadful disease.
Immediate admission to hospital, at that stage the child`s mental state changes. If being pricked and held down (in order to get blood drawn, tests done) is not enough, the child is then stuck into a room filled with nothing but a bed and a little drawer for her “personal things”. The child is literally forced, maybe forced is not the right word, but another does not come to mind, into treatment.
How do we as parents explain our kids what’s about to happen?
That her body is going to change drastically, she will lose her long black hair, that she will feel sick and throw up her insides for the next couple of weeks because of the meds that she would have to take. The meds that is supposed to make her feel better.
How do you explain to a child, that she is not going to see her new-born sister for the next couple of months, because her sister might make her sicker than she is (because of low immune)?
How we explain to our babies that they are not allowed to go to school, or that she is not allowed to play outside; that for the next few weeks, all she will see is the nurses and Dr`s and other sick babies?
How do you force your child to eat, because even though she is starving, she just can’t keep anything down? Or explain to her that the reason her throat is so sore, is because of the meds? ( but Mommy, Medicine is supposed to make you feel better!)
How do we explain to our kids, that the BLUE, Green Or RED stuff running into her body is so toxic ( poisonous to the bare hand), yet it is the meds that MIGHT save her life?
How do we as parents comfort our kids, when we are just as scared?
How we explain the burning sensation that she’s feeling in her arm as the drip runs, that you do everything in your power, to make it feel better?
What do you as a mom, say to your child, when she says it feels as if her arm is literally burning from the inside? How do we stop the tears? How do we reassure them that they will never be left alone, that mommy or daddy will always be there by their side?
How do assure your child that its OK to have dirtied her pants because she couldn’t control her bladder? How we as parents restore our child`s confidence?
How do you comfort your daughter, when she is screaming, that she just wants to go home! Or that she does not want any more medicine because it`s making her feel too yucky? There are days that your child will be this “shell” that you will not recognise.
There will be days that your child will not be “your “ child, because the meds have changed their personality, that all you can do is hold them, and pray that it will all be over soon.
How do you comfort your child when she is lying in bed with a 40 degree temp, feeling hot as hell to the touch, but shivering as if she is in a walk-in freezer, making her convulse from the fever?
LET ME TELL YOU THIS, YOU WILL FIND A WAY !!!!!!!
As parents we become even more aware ..!
We find a way to create a homely feel to the cold and lonely room that your child will be in. Toys, books, DVD player. We try and adjust our attitudes to make things better for our kids. we find a way to speak even softer, to rub that arm, so that the burning stops, we find a way to gently rub her back while she is vomiting all the food that she’s just eaten.
We find a way to make her feel and look prettier than she is, without her long black hair. We disguise the ugly looking red, blue or green stuff (meds) into little fairy bags, so that its easier for the nurses to administer. We find it in our hearts ( even though its breaking to see our kids in this state), we will find a way… !!!!
Thank you, Nazley, for that very emotional and raw glimpse into what a child with cancer goes through, and how you as a parent learn to cope. We are sure that your sharing here will find a connection with some other parent of a child with cancer, and possibly help them in some way.
We wish you well and assure you that Neeshay will forever be a Little Fighter and you will always be part of the Little Fighters Cancer Trust family.