Ope Brief van 'n Kanker-Ma

Van een Onko-mamma aan ‘n ander…

Al ooit gevoel asof al jou mamma-magte verloor as jy by ‘n hospitaal se deure in stap?

Al ooit daai woede ervaar as hulel jou kind met naalde steek en aan pype koppel en gif inspuit en daar is nie iets daaromtrent dit wat jy kan doen nie?

Al ooit die gevoel van ontrouheid gekry as jy jou kindertjie in die oë kyk en jy weet jy’t gejok…dit gaan seer wees?

Al ooit die gevoel van onmenslike pyn ervaar as jy hoor van ‘n ander onko-paar wat se kleinding die stryd verloor het en jy wonder wanneer is dit jou beurt?

Al ooit die gevoel van sprakeloosheid ervaar as jou kind na jou toe kom en vra wanneer Liewe Jesus haar kom haal?

Al ooit gevoel die aarde probeer jou insluk en jy kan nie uitkom as daai teater deure agter jou toeslaan nie?

Al ooit gevoel jy kan iemand met jou kaal hande vermoor as hulle stupid aanmerkings maak oor jou kind?

Al ooit gevoel dat jy wil weghardloop en ‘n hoekie gaan sit en net van alles vergeet al is dit net vir ‘n rukkie?

Wanneer weet mens hoeveel keer is genoeg slegte nuus ontvang? Almal wil altyd weet hoe dit gaan en of jy nog sterk genoeg is. Dit is asof hulle wag dat jy enige oomblik ineen gaan stort en almal raak verboureerd as mamma die dag onbedaarlik huil… en dan staan hulle mos reg met ‘n sielkundige se nommer… I mean freaking HELL!

Wel my experience:

My lewe het in duie gestort die dag toe ek uitvind my kind het kanker. Elke keer wat jy slegte nuus hoor breek daar nog ‘n stukkie van jou hart af en dit is asof jy naderhand nie meer trane het nie maar hierdie onbedaarlike woede en hardheid en ongelukkig kry die persoon die aanval wat eerste bel. Iemand kyk net skeef na jou kind se kaal koppie en jy wil mal word en hom aanrand. Maar dan kry jy mos natuurlik mense wat jou blatant uitskel oor die feit dat jy jou klein meisietjie se hare so kort afskeer, sy lyk dan soos ‘n seuntjie.  So vergewe my as ek nie altyd my moods kan beheer nie maar dit is partykeer flippen onmoontlik.

Jy wil nie altyd hoor dat jy moet sterk wees nie en jy moet bly glo nie, dit is vrek moeilik as jy konstante slegte nuus ontvang en wat die kersie op die koek sit is as jy vertel word deur die medici dat hulle niks verder vir jou kind kan doen nie, nou moet julle net wag en normaal aangaan! Hoe die hel gaan ‘n mens normaal aan?

So aan elke kanker mamma daar buite:

• Jy mag kwaad word
• Jy mag skel
• Jy mag moeg word
• Jy mag siek word
• Jy MAG huil!

Ons is ook net mens, ons het nie super magte nie, sterk wees is ons enigste opsie, ons gaan huil en kwaad word, ons gaan moeg en siek word, so hou op om ons met valk oë dop te hou en te wag vir wanneer ons gaan val. Vir ons is daar net 1 ding om op te fokus en dit is GOEIE NUUS oor jou kind.  Jy leef elke dag net vir daai ekstra stukkie hoop dat vandag ‘n pynlose/medisyne-vrye dag gaan wees.

Theresa Nieuwenhuis

An Open Letter From a Cancer Mom

From one onco mom to another...

Have you ever had the feeling you lose all your Mom-powers when you walk into the hospital?

Have you ever felt that anger when they stick your child with needles and push pipes into him and inject him with poison and there's nothing you can do about it?

Ever felt the mistrust when you look into your child eyes and you know that you lied, that it will hurt?

Ever had the feeling of unimaginable pain when the child of another onco-couple loses the fight and you wonder when it's going to be your turn?

Ever experienced that feeling of speechlessness when your child comes to you and asks you when Jesus is coming to fetch her home?

Ever felt as if the Earth is trying to suck you in and you can't get out when those theatre doors close behind you?

Ever felt that you could murder someone with your bare hands when they make stupid remarks about your child?

Ever felt that you want to run away and sit in a corner and just forget about everything for a little while?

How do you know when you've reached the limit of the amount of bad news you can take? Everyone always wants to know how things are going and if you're still strong enough. It's as if they expect that you'll have a nervous breakdown any moment, and no-one knows what do do if Mom starts crying uncontrollably... except that they're standing there with the psychologist's number all ready... I mean freaking HELL!

Definitely my experience.

My life fell apart the day I found out my child has cancer. Every time you hear bad news another little piece of your heart breaks and it's as if you eventually have no more tears left. What you have in place of tears is an unquenchable rage and hardness, and unfortunately the person who phones first is the one to be attacked. Someone just has to look funny at your child's bald head and you feel like you're about to lose your mind and attack him. But then you get the ones who will actually tell you off for cutting your little daughter's hair so short, she looks like a boy. So forgive me if I don't always have my moods under control, but sometimes it's just flippin' impossible.

You don't always want to hear that you must be strong and you must keep believing; it's very difficult if you're constantly being given bad news. The cherry on the cake is when the doctors tell you that there's nothing more they can do for your child, you should just all go home and wait and carry on as normal. How the hell does a person go on as normal?

So, to every cancer mother out there:

• You are allowed to be angry
• You are allowed to shout and scream
• You are allowed to be tired
• You are allowed to get sick
• You ARE ALLOWED to cry!

We are also just human, we don't have super-powers, being strong isn't our only option, we are going to cry and get angry, we are going to get sick and tired, so stop watching us like hawks and waiting for us to fall apart. For us there is only one thing to focus on and that is GOOD NEWS about our children. You live every single day for that extra bit of hope that today will be a pain-free/medicine-free day.

From Theresa Nieuwenhuis

Childhood Brain Cancer Article 2

Classification, Grading and Staging of Cancers


Before we go on to find out about Gliomas, it will be useful to have a look at how cancers are classified in general, as the same rules apply to Childhood Brain Cancers.

In order to work out what kind of treatment is right for any given cancer, the oncologist needs to know three things. These days, some of these questions can be answered before surgery, by using Magnetic Resonance Imaging, (MRI), but most often, brain cancers and spinal cord cancers need to be operated in order to take a sample for the pathologist (biopsy).


1) Classification: What kind of tumour is it? 

In other words, what do its cells look like, and where is the tumour located? For example, brain and spinal cord tumours arise from normal cells in the brain, mostly from the glial cells. A tumour arising from one of these cells is called a glioma (the -oma part of the word means 'cancer') The name 'Glioma' is a very general word, though, and the tumour will be further classified according to its particular characteristics.


2) Grading: How malignant is it?

If it's deemed necessary, and the tumour is able to be operated, a biopsy is taken. The cancer is studied under the microscope, the pathologist checking to see how many dividing tumour cells are present. The tumour is then given a grading from 1-4 according to how agressive it is.

3) Staging: How far has the tumour already spread?

Part of the process of determining how far a cancer has spread can be done before surgery, by looking at the MRI results. From the image, the oncologist can see if there are any other tumours in the area one would expect the particular type of tumour to spread to. For instance, glial tumours generally do not spread beyond the brain and spinal cord, so an MRI of the spinal cord is all that's needed to stage this kind of cancer.

For some tumours, the surrounding area of the tumour and possible places in the body the tumour could have spread to through the lymph system need to be carefully examined in order to work out what the spread of the cancer is. In some cases, a lumbar punch and examination of the spinal fluid can provide information towards staging also.

Source: Classification, Grading and Staging of Pediatric Brain and Spinal Cord Tumours, Peter C. Burger,MD and Kenneth J. Cohen, MD. (written for the Childhood Brain Tumour Foundation, www.childhoodbraintumour.org)

Childhood Brain Cancer: an overview for normal people, in normal English

I never realised the field of Childhood Brain Cancer was so huge, until I started the research for this blog post today. And it's no wonder; the first thing I learned is that around half of childhood cancers are either leukaemias (blood cell cancer), or cancers of the brain and central nervous system.

That means that a huge amount of research has been done on brain cancer in general, and quite a bit on childhhood brain cancer in particular. And so I decided that this topic needs to be broken up into a few articles. As I learn more, I'll share it with you.

One of the big problems facing oncologists attempting to treat brain cancer is the 'blood-to-brain barrier'. This is a membrane through which all blood to the brain must pass; a safety mechanism built-in to prevent substances passing through that could have an effect of the delicate chemistry of the brain. In a patient with a brain tumour, a healthy, well-functioning blood-to-brain-barrier is an obstacle to treatment with chemotherapy, because the drugs can't get to where they need to be. Usually the answer to this dilemma is to irradiate the area as widely as possible to try to kill the tumour as well as any little bits that may have broken off and are still nearby. In low-grade glioma, a very common type of childhood cancer, radiation therapy has been shown to produce very good results.

Not all brain cancers respond or act in the same way though; some have thus far been resistant to all therapies thrown at them. A new therapy, using various agents known generally as Angiogenesis Inhibitors, is about to enter stage 3 clinical trials on adult patients. So far, the trials have shown very promising results; an angiogenesis inhibitor targets potential blood vessels that could be 'persuaded' by the tumour to provide it with a blood supply. The angiogenesis inhibitor 'switches off' the undifferentiated cell's ability to become a blood vessel cell and the tumour is effectively starved of oxygen and nutrients. Unfortunately, the paediatric version of these trials is only now entering stage 1, and so it will be a number of years before angiogenesis inhibitors are available for children on the commercial market.

In the next few articles I'm going to be talking about the different types of brain cancer, starting with the most common, the gliomas, so stay tuned, I'll be back soon when I've done some more reading.

'Warrior Eli' scam boggles the mind..

Those who know me well will tell you I'm not very often lost for words, but I had one of those moments today when I logged onto the LFCT facebook page this morning. That story I'd seen, the one about little cancer sufferer nicknamed 'Warrior Eli', whose pregnant mom was hit by a truck and died after giving birth to her eleventh child? It was a scam. A beautifully constructed scam, from the point of view of the scammer; nobody even thought twice before sharing the post.

And who would think twice? Most people would at least share the post, some would even go so far as to click through to the facebook page to be confronted by the moving, blow-by-blow account of the tragedy of these people's lives. Reading that brings tears to a person's eyes, makes you want to do something, to help this brave little cancer sufferer to fulfil his mother's last wish; to raise money for childhood cancer. And so, you reach for your credit card. That is how these people raised $1200 through their facebook page in the six hours it was still up after the final virus message about the dead mother broke.

Luckily the deception was noted pretty quickly, and within hours the pages began to come down and the links were broken. The childhood cancer fundraising site http://www.alexslemonade.org/

took the fundraising page down also. It seems that this organisation was duped by Warrior Eli et al just as we all were, after all if someone offers to raise money for your charity, how can you refuse?

The worst thing about predators like these is how they feed on the milk of human kindness. The person holding the credit card is not the one at fault here! The people responsible for this, whoever they may be, have masterminded a way of getting nice people who really love their fellow man to part with some money in the most horrible way possible.

One of the scariest things about this is that, on the internet, not everything is as it seems. It takes nothing to open a few email accounts under different names and create a whole family on facebook if you want to. All the photos were stolen from other websites. Some of the photos were taken from South African blogger Tertia Albertyn's blog,

http://www.tertia.org/so_close/2012/05/someone-is-stealing-pics-of-my-kids-and-using-them-as-their-own-again.html

Another scary thing, which I didn't even think of until I read the comments on Tertia's blog, is the fact that there are people out there who troll the internet and steal photos of other people's children. We forget very easily that the material we post on social networking sites bcomes public property by default; you have absolutely no control over who sees, or uses, your material after you've put it there.

So, what to do? How to protect yourself against people like this? Should we stop wanting to change the world, or harden ourselves against the plight of those who need us? It doesn't seem to make sense to let the scammers win so much from this. Maybe the answer is to not blame yourself for being taken in and to learn from the experience. Be that little bit more mindful that such things exist and a person needs to watch out for them. There are many reasons why it's better to donate to a real, physical Trust like LFCT, not the least of which is that we check that each and every family is who they say they are!

See our website www.littlefighters.org.za for more information on what we do in the 'real' world.

Little Fighter Estiaan Nel is 5 years old and an only child

On Wednesday 11 April, he was diagnosed with cancer of the cerebellum. He endured a 7-hour operation on the 16^th, where doctors were able to remove some of the tumour. It seemed as if all was going well, but Estiaan developed a blood clot a few hours afterwards and was rushed back to theatre. The second operation was a success, and the little boy's whole family breathed a sigh of relief. By the next evening all looked as if it was going well; Estiaan was breathing on his own, 40% of the tumour had been removed, and the catheter could come out.

On 11 May, Estiaan suffered a setback, and his parents and grandparents rushed to his side. It seemed as if this brave little boy was losing his fight, and his heartbroken parents, Alfrieda and Stefan, spent their 9th wedding anniversary at the hospital with their son in the belief that his journey was over.

Miraculously, Estiaan managed to rally again, and the update from his Granny Tanja on our facebook page earlier today was greeted with joy by our supporters and everyone at LFCT

"Estiaan has just opened his eyes and looked at me. Showed him his blankie & dinosaur! He nodded that he saw, which is wonderful. Was more responsive today. Told him about the car his oupa bought for him, with Estiaan's name on it! We told him that we would visit his oupa when is is well again & he smiled at me. Those were a precious few moments with him. He has now closed his eyes again."

This family has no medical aid, and needs all the help they can get in the form of assistance. In this case, the community had rallied round them, and some of them got together to raise some funds with a special benefit concert held last night in George. Once I know how much was raised I'll let you all know!

Please continue to keep this family in your thoughts and prayers; even if you can't help our Little Fighters in any other way, your prayers are always welcome and needed

Brightest Blessings to all our Little Fighters, their families and our supporters.

Greetings, all!

First of all, let me introduce myself. My name is Annalisa Prak, and I am the mother of two thankfully healthy little boys. Garion is turning 7 on Monday, and Garath is 4 and unsure whether he's a baby or a 'big boy'.

What then, you may ask, could I possibly know about Childhood Cancer and the struggles lived through every day by the children and their families? Well, I had a little brother, Edward, who passed away at the age of 11 from the Ewings Sarcoma that robbed him of the use of his leg. I wasn't living at home any more by that time; I was much older than my siblings as they were all from my mother's second marriage. I had watched them grow up, though, and made sure that I spent time with all of them. I loved (still love) all five of them very much.

Perhaps the worst thing about Childhood Cancer, and the one thing that's very difficult to even think about is the complete unfairness of it. The randomness of the way it strikes, with no respect for age, or race, or how many people desperately want the sufferer to be well. That a beloved child should be struck down by this horrible disease, that a little one should have to endure all that pain is almost unbearable to contemplate.

To those who, like me, have healthy children, think about this. Have you ever had to go and have a broken bone set for your child? Or had stitches put in? Wasn't it awful knowing your child was in pain but knowing at the same time that they just had to go through it? A child with cancer is in pain all day, every day, and their parents have to deal with it, have to stay strong all day, every day. The time that your child needs you the most is not the time to melt down....

The stresses and strains of the situation are enough to break any human though, unless there is a strong support network in place. And I don't just mean family; ideally the whole community should pull together to help ensure that the family unit stays strong when there is a child with cancer. Most often one parent has to stop working in order to see to the sick child. Who sees to the other children? Who cooks and cleans the house? Takes children to school and helps them with their homework? Is there enough food in the house now that one salary is gone? Can the family still afford to buy clothes, or do they need some hand-me-downs? Can they pay their bond or rent while still paying for every-increasing medical expenses and travel costs? Will they find themselves in a position that they simply can't afford more treatment?

This apparent lack of community spirit in our society is part of the reason for the existence of LFCT; someone was needed to help these brokenhearted families hold the pieces of their lives together. Your support is what allows us to keep doing the work we do; at times that support is overwhelming, and for that we thank you from the bottom of our hearts. Your donations have made it possible for families to eat, for children to get medicine, and for parents to be able to spend time with their sick children without having to worry about a million other things. Well done!

I don't even know what to make this blog's title...you decide on one

You know, Monday's just generally suck. Don't you agree?

You get back to work after the weekend, you have dozens of emails waiting, you have 23 calls to return, a whole new list of instructions for your week's work...and so the list goes on and on until you get home. Once home, you make the gruesome mistake of not getting take outs...because you find the electricity to be off.

Yeah, it sucks.

My day today was a little like that. Except, I received an sms from one of the Little Fighter's fathers that the child had had emergency surgery today. I call him, and we start chatting. All is well with the child, but the father was hugely upset.

So I asked him what was wrong. His answer made me feel ashamed and sad, unbelieving and astonished.

After almost two years of contacting a certain religious charity for assistance for his family, he was asked to meet them at his house today. This was not a meeting which could be kept to by the father, who is the child's primary care giver, because a normal chemo treatment day, turned into a nightmarish experience. Lymph nodes were found along his neck and scull. These caused great concern to the child's pediatric oncologist, who made the informed and educated decision to remove it surgically immediately.

Once told by the father that he would thus not be able to make the meeting with said charity organization at his home, he was informed that, seeing as he can't keep the appointment, it shows he does not truly need their assistance.

Yup.

You didn't leave your cancer ridden 2 year old to have emergency surgery all on his own to rush over, kiss their feet and apologize because your child's medical emergencies does not fit in with THEIR time schedule? This after this father had to drag his ill child to your offices to prove that he is your child and that the child is indeed ill? After you have spent money you really don't have on airtime to make countless calls to them?

Come on. Anyone, someone....PLEASE, for the love of All that is Holy, PLEASE tell me you think this is as twisted and cruel as I think is is?

This is why I want to let everyone know what the procedures are to add another family to the Little Fighters Cancer Trust.

1. We get contacted by the family or friends of the family, alternatively, we meet the family while we do one of our Hospital Outreaches and deliver our Bags of Hope.
2. We ask for the parents names and contact details.
3. We ask for the child's name and date of birth as well as treating oncologist and number.
4. We call the oncologist and confirm that said child is indeed being treated by him for cancer.
5. We call the parents and introduce ourselves if it was not them personally who made contact. 
6. We offer assistance, making sure they know we do not make promises, except that we will do what we can, when we can and how we can. 
7. We ask for their "story" and a photograph if they want a website profile for their child at www.littlefighters.org.za.
8. We ask for a list of their most urgent needs and information on siblings.
9. We ask if they are supported by other organizations, and in which way. 

We register them as an LFCT Family.

Done.

What truly saddens me is that this father now has lost faith in his religion and his community. He is lost and helpless. A highly educated man who had to stop working because he needed to be his child's primary care giver, living on a chair in hospitals for months on end at times. His wife had to continue working as she has the medical aid. The family has lost almost everything which they, like any other family, has worked very hard to accumulate to build a home.

And now they have been trampled on, beaten down, humiliated, stripped of their dignity and quite frankly, abused.

Yeah. Mondays suck. A lot more for some.

Hopefully Tuesday will shed some light on what we need to do next because what happened here cannot be left as is. This kind of treatment by organizations should not only be frowned upon, but should be dealt with as swiftly and harshly as their poor and callus treatment of families seeking support as a last resort.