Childhood Cancer Affects Body, Mind & Soul
On Monday we shared a post about a Little Fighter who had just lost the battle with Childhood Cancer, and I shared a little of how it feels to work with children who struggle with this disease every day, but did not want to make too much of it on that post, as it was not about us.
Today I want to share a Facebook post with you that was written on the 28th of September by a member of Team LFCT – a member who deals with the scourge of Childhood Cancer on the front-line, a member who deals directly with our Little Fighters and their Families one-on-one…
I want to share this post on the blog as not everyone who reads our blog is on our Facebook page and I want this to be read by as many people as possible so that you can, maybe… perhaps… get just an inkling of what a diagnosis of Childhood Cancer means and does…
This is an unedited, passionate, raw post that comes from the heart – please read it to the end…
This post will probably be seen by many as inappropriate, and I doubt many people will read it to the very end. As of yet, I am sitting here, not quite knowing what my fingers will type next, but this urge to share what we keep away from the public eye for the sake of saving the public’s feelings, I am not able to suppress today.
My eyes are red raw and sore, because I have been crying with two parents since the middle of the night. I know that I am supposed to be emailing companies and introducing the work which we do, and hope that I ask nicely enough for a donation to be made, so that we can keep doing what we do, and hopefully, be able to help this family too.
But today, there is this stone in my chest, weighing very heavily in my heart, and paralyzing my brain, my thoughts, my will. And it scares the shit out of me, because I can’t switch off, I don’t have that luxury. I know this, and yet, I sit here, and I am not really here. Useless.
It has been a tough week. A tough month. A tough bloody year, actually. I am so sick and tired of begging for money every single day. I am a very independent minded person, and I can count the times I have had to pluck up the courage and ask help for myself in my life, on one hand, and still have a few fingers spare. And yet, every single day, I put that pride, that ego, that teeth-gritting, way back in myself, and I beg.
I beg, because I have photographs, sent to me by parents, of pillows drenched in blood, which I can’t post on the facebook page, because Heaven forbid anyone be offended by the truth. I have photographs of infected flesh which I cannot bear to look at more than the one time, when I received it. I have photographs of broken little bodies, where bones literally float around unattached in supernatural-looking positions because what was there in muscle, bone and sinew, has been eaten away. I have photographs of little faces, so swollen from harsh drugs, eyes not able to open, skin so taut, it is tearing and blistering.
We have the worst possible motivation EVER to get up every morning and to BELIEVE, today will be better, today will be the day that “something has got to give”. So that we can give.
We ask nicely. We ask factually. We ask emotionally. We ask with logic. We ask plainly. We ask with many explanations. We ask with tears sometimes. We ask every which way. We make videos, advertisements, posters, set up sms lines and learn how to put together a SmartApp, learn about what a QR code is and how to use it. We make it possible for a person on a longdrop toilet in the middle of the Serengeti, surrounded by lions, to make a donation.
But, it is not enough, somehow. 24/7/365, just is not enough. The children, the families, the needs and the extent of the needs, are getting more and more, and donations are not even close to keeping up, but getting less and less.
This is not a pity-party. This is not about me or any of our Team personally. We don’t want anyone to say, “what you do is so awesome, keep it up”. It is not awesome. It is Goddamn horrible, and if we were not slightly insane to start off with, we would probably all be off our rockers completely by now. None of us actually have a child with cancer, we were not forced into doing this from the inside, we chose to get involved, because our eyes were opened to all those things which sweet, bald-headed little faces on photographs, hide away.
On the one side, we would love to have a normal life with normal jobs and nice, normal office hours. On the other side, we know that we cannot go and have a normal life, because it would mean leaving behind everything and everyone we love.
This is about how what we chose to do, impacts our entire lives here at the Little Fighters Cancer Trust, and how we have changed, as individuals, because of what we have seen, heard and experienced. This is about being in a corner, with our backs to the wall with no resources, and while in this position with arms lifted in defence, having a score of scared and desperate families behind us in that very same corner, whom we are trying to shelter from all the wrongs and injustices which is brought on by a disease which is a monster, devouring Life without prejudice.
We can’t see the monster in any a physical shape, but we see it in tears of despair, dripping on hospital floors.
We see it in the worry about where the next meal for a family will come from.
We see it in family registration forms where under the section to write their needs, “Just a roof over our heads” is printed in a shaky and hopeful hand.
We see it in worry about weight loss, where a mere 200 grams can be a celebration or a massive setback.
We see it in worn shoes, stuffed with plastic shopping bags to keep a Mother’s feet dry, while she searches even the lining of her handbag for a coin or two which hopefully slipped out without her knowledge, because her chemo puking child can only stomach KFC Pops.
We see it in shattered dreams, siblings having to sacrifice their own, for the mere survival of the family.
We see it in in the bruises, the hair loss, the needles, the bags and bags of monster-poison hanging from wobbly drip stands against bright and prettily painted flowers against hospital walls.
To know a 7 year old little boy who has been fighting this monster for 6 and a half years of his life, who recently held a toy gun to his own head, while telling his father, that he is going to shoot himself for it all to get better…
I am a bit lost in where I was heading with this, so please excuse me if what you are reading, seems haphazard and confused, because that is how I feel.
I want to explain to you how it feels to sit with a number of children in crisis, a great many families who are torn apart and suffering all kinds of nightmares from which they cannot awake, and while you listen to their sobs, see the pictures they send you, walk into their barren homes, you know, right there, at the back of your mind, you have to now send another 800 emails, do another facebook post, call a few people whom you hope have not blocked your number because you keep calling, otherwise you are only one more empty promise, an echoing prayer.
I want to explain to you how it feels when your phone starts going off in the middle of the night, and you immediately run a list of four or five names through your mind, praying, please, don’t let this be THAT call. Anything, just not that dreaded call where no matter what you say, it carries no weight or meaning, no matter what you still wanted to do, it is now useless, time has run out to make a plan.
I want to explain to you how it feels when you have ten please-call-me’s on your phone, each from a different number, and you know exactly what each one needs, and will be too scared, to shy, to embarrassed, to ask out straight, and how it feels to call them back, one by one, trying to keep a level tone of voice, while you sit with one hand pressed against your forehead and with eyes tightly shut, cringing. Because you have no choice but to ask every single one, that they need to wait. Wait, when they waited as long as they possibly could, before plucking up the courage to ask you for help.
I want to explain to you, how it feels when the mother, father or grandparent of a child who is critically ill, takes the time to let you know, they are praying for you and LFCT. Knowing that in those prayers, there is only love and respect. Knowing those prayers are also for their next meal, the next tank of petrol the next bus fare to hospital, the next pack of diapers, the next, the next, the next. Knowing that you need those prayers, to get up tomorrow morning, and to ask again, because you have nothing to work with.
So. I got up today. Put on some lipstick and mascara, which since, I have snotted off again, because today, has not been a good day so far. When fear for another person’s life and brings you to your knees in front of the toilet and doubles you up with pain from worry, and all you want to do is crawl back into bed and hide away from the World….but you also know, THEY don’t have that luxury, so you have no excuse, no reason and no option really.
So. Again. I have to ask.
Please make a donation.
We can’t keep the monster at bay, but we can, with your generosity, your donations, relieve some of the havoc and heartache by taking care of the basics, while they Fight for a chance to Live.
There are numerous options how to donate, so even if you are in that longdrop toilet in the Serengeti, surrounded by lions, you can, if you want to.
Do you understand NOW why I have posted the above? Dealing with Childhood Cancer is no joke, and doing so without the help of government or any long-term large corporate funding behind us is soul-destroying on a daily basis…
Please help us to help them…
The Little Fighters Cancer Trust is a registered NPO with PBO status. This affords private and corporate donors the taxation benefits as set out in Section 18A.
BEE score points are also accumulated.
Trust Reg No: IT2817/2010
NPO No: 089 376
PBO No: 930037657
Account Holder: Little Fighters Cancer Organization
Bank: FNB Paarl Mall
Account No: 62277783249
Branch code: 250057
Swift code for international donations: FIRNZAJJ
Trust Reg No: IT2817/2010