The Uncharitable World of Charity

It's not an easy path through life we've chosen for ourselves. We are faced with high emotions and the reality of death every single day. We pride ourselves on being the only children's Cancer charity that actually goes right into the townships. We know there is often danger, but we go in there anyway; how could we refuse help to a sick child living in terrible circumstances?

We carry on, every day, because we want to, and we feel we must. We feel that if we don't do the job, someone else will just come along, raise the money and pretend to help those in need.

Sometimes we have a day that makes us wonder what it's all really for, and if it's really worth it to carry on...

LIttle Fighters was fotunate enough to be chosen as one of the three beneficiaries of the 'Cause We can/Want Ons Kan concert in Bellville. We never got to watch the show though because before it even started we were waylaid by four large women; two of them distracted us while the other stole Thomas' bag.

The bag contained all of the Trust’s photographic equipment, to the value of about R30 000, as well as all the Pick & Pay grocery vouchers for our most needy families. We provide substantially valued grocery vouchers, per family R2000.00 per month. This has been a tremendous setback for our organization.

The response, or lack thereof, by the Belville Police was hugely disappointing.

If any of our fans and friends were at the concert and had a video camera, please please send your footage on to us! We'd like to be able to see if the women were caught on camera. Someone has to try to track them down, and it doesn't seem to us that the police are going to try.

We won't stop doing what we do; we know that we are needed and we could never let our families down like that. But it's not easy to keep going on when things like this happen.

Pray for us... we need some strength today...

Tune in to Good Hope FM this morning to hear our team! We'll be on Guy Macdonald's show at about 8:40 am.

Reef Carneson's Granny speaks...

This letter was written by Reef Carneson's Granny, Charmeon to her son, Ryan. We're re-posting it with her permission here, because it gives a brief, painfully honest little glimpse of what it's really like to have a child with cancer. It highlights the very reason for Little Fighters' Cancer Trust's existence: no family can walk this path alone. The only way a family can get through Childhood Cancer is with a very strong support network.

Reefie himself would not be alive today if his family had been left to try to muddle through their tragedy on their own! Thousands of people came together to save that little boy's life by helping him get to America for treatment.

Charmeon's letter shows what life is like in an oncology family, even when there is a strong support network. It is also a moving tribute to her son, a father who has had to face parenthood in ways that most parents could never even imagine. Like so many fathers and mothers of children with cancer, Ryan is a silent hero, dedictated to doing whatever it takes to saving the life of his child.

A TRIBUTE TO MY SON

Just thinking back to the beginning of this horrible cancer journey and thinking just how awesome you are and have always been.

How hard it must have been for you to have been expected to be strong, hold everyone together, work, provide, and always have all the answers

I remember you getting the horrible news that your son was very ill while you were at work and having to rush to the hospital all on your own, in shock and not knowing what to expect. Your face as you looked at the doctor in disbelief when she delivered her diagnosis.

Your rushing out in the middle of the night to buy more blankets as all the ones you had, had been puked on. Leaving Pretoria at 5 a.m. to go to work and returning at 7 p.m. with take outs for supper and sleeping in a church building across the road from the hospital in the dead of Winter when the hospital would not allow you to stay with your son anymore.

I clearly remember you promising your little boy that you would never leave him and yet being forced to watch the emergency helicopter fly off with your son who was not expected to make it to ICU. I can still see your face as I look through the ICU glass in the top of the door sitting on a bed all alone, tears streaming down your face after being told you cannot hold your little boy’s hand as they hold him down screaming and bewildered to insert yet another line.

I can still hear the control in your voice as you phone me in the dead of night for the umpteenth time to say “Mom, I think you better come”. I hate that so often you had to scrape me off the floor when I should have been doing this for you.

I remember seeing the hurt in your eyes when you handed your little boy to me while he was fitting so that you could be strong for your wife and organise the never ending emergency packing to once again leave for the hospital. I have no idea how you have managed with little or no sleep for months on end while always remaining optimistic.

I know what it took to have white cells extracted in a gruelling 4 hour procedure when I know that needles have been a fear of yours from a very early age. Rushing with these life saving cells across town to have them irradiated and then back to Pretoria with your precious cargo to infuse into your son.

The week in isolation, watching from the doorway, when you had your little boy lying on a pillow on your lap, swollen beyond recognition and almost lifeless, attached to multiple drips in an effort to keep him alive, too scared to move in case you caused the fragile balance of his life to be altered.

The tender way you cared for him when his Mom was ill or in hospital organising your home with military precision from mixing and giving meds, mouth, eye and skin care, feeding to staying up all night for fear of not being awake when he needed you.

The absolute strength it took for you to hold your tiny little boy down and push the N.G. down his nose, praying that nothing would go wrong.

The day you took your precious little man to Unitas for the unending blood tests only to get a call to say your wife was about to give birth and wanted you there. Your level headedness in organising a police escort and racing across town in record time to see your little girl being delivered.

The terrible time you had being torn between two ICU units, having to choose between a critically ill little boy and a tiny premature little girl as cross infection between ICU units was a dangerous reality.

The strength it took to sell up everything you worked so hard for, leave your home, your family, especially your brothers and fly off with two babies to a strange Country with just the thought of better care for your boy in mind.

Accepting that you cannot work to support your family when I know how hard this is for you and still believing in your little man’s miracle.

I cannot forget the hurt in your eyes when just recently I witnessed your sweet little boy when saw some children playing and unable to speak, tapped you on the shoulder while in your strong and protective arms, pointed to himself and then to the children playing a floor below. I know that in that instant you would have given anything to change the way things were.

I thank God for your incredible faith, determination and positivity when lesser men would have been crushed by what you have had to face for such a long time now.

I am so very proud to be your Mom.

Love you Ryan.

Eddie's Nintendo

'Little Edward' was a big child. I mean he was really huge; he had men's size 12 feet when he passed on at the age of eleven! When he was four years old I would wear his Ninja Turtle sneakers for a laugh. He thought it was hilarious, seeing his adult sister stomping around in a pair of kiddies' shoes!.The reason we still think of him as 'little Edward', is partly a little family joke and partly because, for all his massive size, Eddie had the softest heart. He tried rugby at school, but he stopped very quickly. It was too violent, and he could get hurt. He didn't like anybody being hurt; it really upset him.

How tall he was at the end, I don't know, but I remember he towered over me before he lost the ability to walk. When he became ill, his size became a real difficulty, mostly because no-one except my mother had ever had to deal with an eleven year old child the size of an adult. She was the only one who could move him from the bed to the wheelchair or bathe him without causing him an agony of pain in his leg.

Tygerberg Hospital being what it was, there was no way he was going to be able to explain this to the orderlies who had to move him from his bed to a stretcher so he could have an X-ray done. The language barrier was too huge, the problem too complicated to explain in a few words.

I knew none of this, as I could only spare a couple of days a week to be with him, whether he was at home or at the hospital. Mum and I visited with him for a little while, and then the nurse came in and told him he was going for an x-ray.

He didn't cry, or even protest, although he could sometimes be very vocal about what he wanted. He had been playing Mario Brothers on his Nintendo, and he passed it to me. He'd let me borrow his pride and joy a couple of times and I was quite into the game by now.

'Play on with my game, please?' he said to me, 'I have 6 lives, so you should be able to play for a long time. Don't lose my lives though, ok?'

'Ok,' I said, surprised. This wasn't normal. Usually he wouldn't let me near his game.

'Now go into the waiting room and don't stop playing, ok?'

'Ok,' I said, and obeyed, wondering what he could be up to.

I saw the two orderlies walk past pushing a stretcher between them, but I played on, as ordered. A couple of minutes later Eddie started to scream at the top of his lungs. I cannot describe to you what it felt like to have to sit there, with my bum glued to the chair, and not cry because I had to keep playing, listening to the sounds of raw agony coming from this child I wanted to protect with all my soul. I cannot, for a moment, imagine what it was like for my mother, his mother, standing next to him helpless in that room while the orderlies dragged his huge frame onto the stretcher.

My shoulders were heaving, and I was gulping in air, trying not to start screaming myself. I wanted to run in there and stop them but I couldn't, I had promised to keep playing. I knew at that moment that his giving me the game had been entirely conscious and calculated.

He was protecting me from his pain.

How is that possible? How did he know to do that? How could it be that he was thinking about me in that moment? I just don't know, I have no answers... 

Maybe a small part of Eddie's purpose was so that I could write his story, so that you could understand a small part of the reality that is childhood cancer. It's ugly, and it's tragic, but there are beautiful bits too; like the bright red little cherry tomatoes that grow on a rubbish dump. And, it's a story that has to be told. Children like Eddie, like Xuane, like Reef, and like little Estiaan who passed over recently, they all need a voice so that the world can understand that they are real children, with real families. Their suffering is real, and so are their triumphs.

'

Abandoned at the Hospital

After Edward was diagnosed, my parents realised that they would never be able to pay for private treatment, and so, reluctantly, they took him to Tygerberg Hospital in Cape Town.

Tygerberg is not a nice place; it's a big, confusing, seething mass of sick humanity. Nurses are genuinely overworked and underpaid, and there's not enough money to maintain the hulk of a building. There is old wall paper hanging off the walls in great big drooping strips, and sometimes it takes a while for blood to get cleaned up off the floor. There just aren't enough orderlies with mops and buckets to go round. They all do their best, for the most part, but there can't be many other more thankless and exhausting jobs than nursing or cleaning at Tygerberg.

The children's oncology unit almost looked as if it was in a different hospital. Someone had donated money for the place to be painted out with childrens' pictures and each little bed had a kiddy duvet on.

As we got Eddie settled in, I heard the crying. When I heard it, I realised I'd been hearing it since we arrived. I was at the hospital a lot, and almost every time I was there, I heard the same crying. The little voice was hoarse already, and it had a plaintive, exhausted tone.

Eventually I went to investigate. The crying was coming from a perspex basinet. There was a baby lying in it, suffering from hydrocephalus, or water on the brain. He couldn't lift his swollen head up, and so he had to lie there until someone picked him up. He was eight months old and in constant pain, the ward sister explained, when I asked her why he kept crying. His mother had stayed with him in the hospital for a couple of months, but her family couldn't do without her. She hadn't been to see him for a long time now, and when they had tried to find her she had disappeared.

The sister told me that the staff  had enough on their hands without still having to cuddle the baby, and so they gave him his medicine, and changed his nappy, but no-one ever held him like a mother. No-one. 

Ever.

I was aghast...I'd seen enough in this hospital to expect this kind of reaction from the nurses, but how could a mother abandon a dying child? What kind of monster could do such a thing? The sister must have seen my outrage, because she told me this happens often. Way too often, parents were forced to choose between the sick child in the hospital, and the healthy children at home. Most people couldn't just quit their job and attend to a sick child. The transport costs alone are impossible for many.

And that's where Little Fighters comes in. At the moment we are able to support 40 families every month with a lot of what they need to keep the wolves from the door while they attend to their child in hospital, but we'd like to be able to support 100 families by the end of  2012. So that sick little children don't have to get abandoned at the hospital because Mommy just can't see any other way. I can only begin to imagine what agony that mother must have gone through every day knowing her little one was far away and in pain day and night. We want to make sure that doesn't happen.

Help us to help them.

SMS LFCANCER to 31222 to donate R10 per week towards helping needy cancer familes.

Where Have All The Children Gone...?

In South Africa, many many more children die of cancer each year than is necessary. In this modern era of high-tech medical treatment some 70% of childhood cancers are completely curable..

if diagnosed in time!

How is it then that in South Africa we only have a 20% survival rate for childhood cancer? How?

My own experience is something to go by when trying to work this one out. I have had times in my life when I had access to a brilliant medical fund that covered absolutely everything. A mere visit to the doctor was nothing, you never even saw an invoice. To me, if you were ill, you just called the doctor. He would examine you, and refer you if necessary. It was a simple process. If you had cancer you could be on medication within a couple of weeks from your first doctor's visit.

Later on, and unable to pay a doctor COD as demanded, I quickly discovered that 'white' people could go to the government clinic too! Here, the process of getting to see a doctor, something which should be a simple matter, can result in months of frustration before anyone listens to you. And usually, that for lack of a fever.

Here's how the process works, briefly. You go to the local clinic, and first you see a sort of screening person, who checks your details, takes your temperature and passes your file to the next link in the chain. Sometimes, if you don't have a temperature, this is interpreted as you not being sick, and you are sent home. You come back again, and this time you are allowed to see the sister herself, who gives you a random broad-spectrum antibiotic and sends you home. This process can go on for quite a while before you eventually get to go to the hospital, where the whole process starts again except there's a doctor attached to it. And then on to a new, bigger hospital, many kilometers from your home, to hopefully see a specialist. When you arrive, you are given an appointment and sent home. And so on, it really can take months...

There are too many links in this chain! There are too many places for it to break down, so of course it does. We can't fix the system itself, but we can help it along by raising awareness. Let people know what childhood cancer is, and hopefully the awareness will filter into our health system. All that's needed is the same attention that's paid to Tuberculosis and HIV/AIDS in our government clinics.

What we're trying to do, is to make a big enough noise that the people in charge of health care hear us too. Some of the best medical practitioners in oncology and many other specialist fields already practise from government hospitals, so we're part of the way there. Now to get the children to see those doctors more quickly.

We need you to stand with us and support us in our Sporting 4 Child Cancer project. Around the country, people are getting fit to ride 2600 km with us from the top of South Africa to the bottom, with shows and events all along the way, raising our voices for Childhood Cancer in our country.

Raise your voices with us for the children!

Have a look at www.sporting4childcancer.co.za to see how you can get involved, or

SMS LFCANCER to 3222 to donate R10 per week towards supporting needy cancer families

Go To www.littlefighters.org.za to learn more about the Little Fighters Cancer Trust. 

Little Edward's Decision

Those of you who have been following this blog will know that I had  little brother, Edward, who died from Ewings Sarcoma at age 11. By the time it was diagnosed, the tumour was 300ml (huge) and had broken through his femur. Even at diagnosis, we all knew that barring a miracle, Eddie wasn't going to be with us for much longer.

There was no protocol in South Africa to treat his tumour; they had simply never seen one that big, and neither had any of the doctors they contacted for advice in other countries. The only choice was to bombard Eddie's body with as much chemotherapy as they thought he could stand. At stages it was a toss-up what was going to kill him first, the cancer or the chemo. Amputation wasn't really an option; when the tumour broke through the bone, millions of cancer cells spread throughout his body and more tumours were inevitable.

I don't think that anyone ever actually sat down with Eddie and explained to him that his chances of making it to adulthood were miniscule... eventually he worked it out for himself, and then the anger began.

Gods, he was horrible to be around for a while there! We just wanted to spend as much time with him as possible, and he spent as much of that time as he could pushing us all away. It was heartbreaking... while we were praying for that miracle every single day, we also knew that his body could only take so much; we knew the clock was ticking.

But how do you communicate this stuff to a kid? How do you tell a child not to hope too much when you can't even tell yourself that? And, of course, there's the ever-present idea that the power of thought itself might help. You can't allow the child to lose hope, that would preclude that miracle you're waiting for. But to be fair, we should have probably told him sooner. That anger was an inevitability, maybe it would have been easier if he had been allowed to experience it in its time.

He spent Christmas Day 1998 in hospital getting chemo. Christmas Day :-( The day all kiddies are supposed to be happy and surrounded by family and good food and cheer. We were all there with him, and brought our Christmas lunch to eat with him. And then we had to go home. I'm crying right now once again thinking of it... he howled, and sobbed, and screamed at us, all the while apologizing over and over again for ruining Christmas for everyone. Ruining Christmas, Eddie? Never, my darling child. Cancer ruined our Christmas love, not you; never you. We should have told the hospital to stuff off, that you could start your chemo the next day.

Not long after that, Eddie made a decision. He decided to come home, stop his treatment, and die with dignity. His anger was gone, and a strange peace came over him. In desperate pain, with tumours popping out all over his body, he allowed his father to drag him to Lourdes in France for a miracle cure. He knew it wouldn't work, but he also knew that his father needed that, he knew his dad would blame himself for the rest of his life if he wasn't able to try one last thing to save his child.

At home, Eddie played lots of Nintendo, and watched all his favourite movies. He had Mum draw all the money out of his little bank account, and instructed her to divide it equally amongst his siblings. He called each one in, and gave them a little piece of advice, and told them how much he loved them. I wasn't there that day... I had to go away to work and I never got to say goodbye.

But Eddie did. Eddie got to say goodbye. He knew he was dying, and he allowed the process to happen. He told our parents that they needed to allow him to go, that he loved them dearly, and he was grateful for everything they had done for him, but that they needed to let him go. He made his own decision, and he stuck to it, and thank goodness my parents actually allowed him to do that.

Hope is important; it's where miracles come from. But just as important is allowing even a child to say goodbye. Allowing that quality time. No hospitals, no treatments except pain meds. Just loving family spending the last bit of time together that they have.

It is heartbreaking, but it's beautiful too. I wouldn't have taken that away from Eddie for anything on this Earth.

I still love you, sweetheart. Still miss you every single day. But I'm so grateful you were allowed to die a good death.

By Annalisa Prak

Neuroblastoma; How does this cancer affect real people?

While I was doing the research for this article, and getting fairly desperate to find out what a real family goes through when a child has Neuroblastoma, I came across the following on a Neuroblastoma support group forum As I read it, I realised that I'm not qualified to write this article; the only person qualified to do that is a parent who is going through it, or someone who's had the disease and survived it.


And so, I decided to just let these two people speak; 'Lovebird', the parent, and 'Mariah', the survivor.


Lovebird..
23 November 2009


"My daughter was diagnosed one year ago with neuroblastoma stage 4 high risk and was given 20% chance of making it. WOW!!!

She was 5 at the time, after one full year of treatments and hospital we are still seeing signs that it may not be over, her cancer has metastasized all on the left side of her upper body, the main mass was 9 inch long by 3 inch length by 3 inch thick, she had a mass in her neck the size of a small ball and has it around her vertebrae.


She also has a mild mental retardation which we learned about when she was 4 years old so all this has been quite a challenge to her and us.



Right now she is having more ultra-sounds for unexplained weight gain (2,3kg) in a week, her spine is getting curvy and she always has blood in her urine, two bone marrow biopsies show two different result and I dont know what to think anymore... she is finishing her isotrenoin treatement in December."




Mariah...
30 January 2010

"Hello, my name is Mariah, and I am currently 30 years old. I was diagnosed with neuroblastoma at age 1, and there was no cure at the time, so I became an experimental patient.


I had years of chemotherapy and radiation (I remember some of it!!), and it worked and I have been pronounced cancer-free for almost 25 years!



When reading your posting, I noticed many similarities between my cancer and your daughter's. My tumor was very large, and was wrapped around my aorta and my spine. Due to the radiation and damage to the spine, the doctors told us that I would have scoliosis, but they did not know the severity of it. I had very severe scoliosis, and have had multiple surgeries on my back, including fusion of almost the entire back.

I have chronic upper and lower back pain, and I have difficulty walking long distances - I use a cane for short distances and a wheelchair for long ones. The pain is very severe, and I have had so many secondary effects from the experimental treatments. In fact, I am writing a book about my lifetime in the medical field(!) and how I deal with it.



Overall, I have been able to do lots of things in my life, despite everything, and I am happy to be alive and have a wonderful husband, family, and friends support system. Although I am unable to use my education, I have a B.S. in Political Science, spent 1 semester in law school and then got my Master's in Business Administration instead. However, I also have 1 1/2 years of biology, chemistry, and anatomy and physiology education, too...."




Lovebird
31 January 2010

 
"My daughter is in recurrence and since December we've had two options:

1- do nothing and hope she will live more than a few months or

2- be part of palliative care and try more chemo and radiation to control it so she gets to live as long as possible because there is nothing more to be done, the tumor is coming back at the same place right now, it's surrounding her left lung, on vertebrae, and abdomen.

All we have is hope, hoping she will be stronger than the neuroblastoma but no matter what, we've been told that it will always come back because of the genetic study they did on the tumor when she had surgery.

We already in the past went through dialysis because the drugs they use are so strong. The side effects can be amazing so we have to watch for that. Her body is still fragile from all the strong drugs, strong radiation and her stem cell transplant so I dont know anymore what to think..."



All I know is that this mother, Lovebird, and her daughter, are going through a private hell that can only be understood by someone in their situation...



And I know enough to be grateful to the Mariahs of this world, spreading a real, first-hand message of hope.



Note: I've done a bit of editing for clarity and brevity's sake, the original page can be found at http://www.mdjunction.com/forums/neuroblastoma-discussions/introductions-personal-stories/1023070-my-little-girl-has-neuroblastoma-she-is-6-now
P.S. Bookmark this! (Very Useful Links)


www.mdjunction.com is a vast collection of online support groups; there are 65 groups for cancer alone. See http://www.mdjunction.com/support-groups/cancer/

About Neuroblastoma

Neuroblastoma is a rare disease in which a solid tumor (a lump or mass caused by uncontrolled or abnormal cell growth) is formed by special nerve cells called neuroblasts. Normally, these immature cells grow and mature into functioning nerve cells. But in neuroblastoma, they become cancer cells instead.

Neuroblastoma most commonly starts in the tissue of the adrenal glands, the triangular glands on top of the kidneys that produce hormones responsible for controlling heart rate, blood pressure, and other important functions. Like other cancers, neuroblastoma can spread (metastasize) to other parts of the body, such as the lymph nodes, skin, liver, and bones.

It occurs almost exclusively in infants and children and is slightly more common in boys than in girls. Children diagnosed with neuroblastoma are usually younger than 5 years old, with the majority of new cases occurring among those younger than 1 year old. 

Signs and Symptoms

 

The effects of neuroblastoma can vary widely depending on where the disease first started and how much it has spread to other parts of the body. The first symptoms are often vague and may include irritability, fatigue, loss of appetite, and fever. But because these early warning signs can develop gradually and mimic those of other common childhood illnesses, neuroblastoma can be difficult to diagnose.

In young children, neuroblastoma often is discovered when a parent or doctor feels an unusual lump or mass somewhere in the child's body — most often in the abdomen, though tumors also can appear in the neck, chest, and elsewhere.

The most common signs of neuroblastoma are caused by the tumor pressing on nearby tissues as it grows or by the cancer spreading to other areas. These signs vary depending on how much the cancer has grown and where it has spread.

For example, a child may have:

• a swollen stomach, abdominal pain, and decreased appetite (if the tumor is in the abdomen)
• bone pain or soreness, black eyes, bruises, and pale skin (if the cancer has spread to the bones)
• weakness, numbness, inability to move a body part, or difficulty walking (if the cancer presses on the spinal cord)
• drooping eyelid, unequal pupils, sweating, and red skin, which are signs of nerve damage in the neck known as Horner's syndrome (if the tumor is in the neck)
• difficulty breathing (if the cancer is in the chest) 
  
  

Treatment

 

Most cases of neuroblastoma require treatment. The type will depend on several factors including the child's age, the characteristics of the tumor, and whether the cancer has spread. 

Children with low-risk or intermediate-risk neuroblastoma have a good chance of being cured. However, about one-half of all children with neuroblastoma have the high-risk type, which can be difficult to cure.

Typical treatments for neuroblastoma include surgery to remove the tumor, radiation therapy, and chemotherapy. If the tumor hasn't spread to other parts of the body, surgery is usually enough.

Unfortunately, in most cases the neuroblastoma has spread by the time it's diagnosed. In these cases, chemotherapy and surgery are the primary treatments and may be performed in conjunction with radiation therapy and stem cell or bone marrow transplantation.

Newer treatment options include tumor vaccines and immunotherapy using monoclonal antibodies, special substances that can be injected into the body to seek out and attach to cancer cells. They're sometimes used to deliver drugs or other treatments directly to cancer cells, helping to improve treatment.

Prognosis

 

With treatment, many children with neuroblastoma have a good chance of surviving. In general, neuroblastoma has a more favorable outcome if the cancer hasn't spread or if the child is younger than 1 year old when it's diagnosed. High-risk neuroblastoma is harder to cure and is more likely to become resistant to standard therapies or come back (recur) after initially successful treatment.

Source: http://kidshealth.org/parent/medical/cancer/neuroblastoma.html

Sporting 4 CHILD CANCER.....where are YOU?

Mandie Erasmus, 34 years old, weight 114.1 kilograms, 2 children, husband, lover of food (especially chocolate), non- drinker, fun loving, a bit weird, loud and proud. Proud of myself for pulling my finger and joining the Sporting 4 CHILD CANCER project. Not just as the one who makes the phone calls, does the route research, does sponsorship requests and plan on running the awareness part of this huge project myself. BUT, for getting off my fat backside, and putting my body where my mouth is.

Getting SA Fit For The Fight.

No easy feat. I am sure there are hundreds of thousands, if not millions, of people just like me out there. Busy lives, obsessed with work, finding it hard to make time for anything you enjoy, never mind getting up that bit earlier to sweat it out. For whom it is easier to stop off for take aways than it is to think of healthy AND tasty meals. For whom life has becoe so comfortable, it is really hard to get yourself to that place where something motivates you to get uncomfortable.

HOW did I get to this point? I USED to be sporty, I USED to be a size 34, I USED to run, swim, walk, tae-bo, I USED to enjoy being ALIVE. Somehow, I got myself into this rut of getting up late, just in time to beat the clock every day, eating greassy and fatty foods, sitting in front of my pc all day, eating chips and chocolates late at night, and having a double shot of hot chocolate before bed every night.

THAT is how I got to where I am today.

I feel as if I have given a part of my life away. No, not feel. I HAVE given a part of my life away. To the Easy Life. The Lazy Life. The Comfortable Life.

Now, I am ready to reclaim what was always mine. Health.

I cannot possibly be involved with the Sporting 4 CHILD CANCER Project if I can't talk the talk AND walk the walk.

So, as I walked this morning, and my legs got shaky and tired, I slapped my thighs, telling them to move. Telling them that what they feel is nothing compared to the absolute hell some children go through every day with chemo, radiation, hair loss, nausea, pain...I swore at myself, and chanted all the names of the brave Little Fighters in whose eyes I have had to look.

Although I have worked for LFCT for almost 2 years now, I can only NOW really say, I am FIGHTING. Putting my body, mind, heart and soul into the ring for Childhood Cancer. Beat me, punish me, hurt me, I might cry tears of pain, I might feel that the task is too great, that I am too weak.

But I am strong. I know I am. Because I have the worst motivation there is. Getting Fit, Living Healthy...for the many children who don't have that choice. I will walk for you, run for you, cycle for you, and FIGHT for you.

This is my promise. This is my heartfelt truth.

Please join the Sporting 4 CHILD CANCER facebook page, and join the project.

If we can get South Africa Fit For The Fight, we will raise healthier children, with healthier lifestyles, and by keeping our children healthy, we will give them a Fighting Chance!

https://www.facebook.com/Sporting4ChildCancer

Complementary and Alternative Therapies: what you need to know.

It's impossible to describe the pure, desperate frustration that is a fact of daily life when you have a child with cancer. As Theresa Niewenhuis said in her heartrending letter to all cancer moms, every piece of bad news breaks another little piece of your heart. I was an adult when my 11 year old brother was diagnosed, and I know what my parents went through. When the bad news got too much they were willing to try absolutely anything that even vaguely promised a cure.


Just to clarify, there are several kinds of cancer treatments


1) Proven treatments


The main difference between mainstream medicine and all other types of treatment is that in mainstream medicine, a new medical treatment is considered to be inneffective until it has been rigorously proven to work. A new medicinal substance is subjected to 4 stages of clinical trials before it's realeased onto the market. If the small studies, performed in test tubes and mice, show promising results, the substance is given the go-ahead for trial to proceed to larger and more complex studies. The final stage of clinical trials, in a large group of human subjects, only takes place if all the other studies are found to be flawless, and even so, the idea may be abandoned even at this stage.This process literally take years, so even if a new treatment seems promising, the chances are that ir won't be legally available for a very long time.


The results of these studies will be published in a peer-reviewed journal; this is a place where clinical studies are put up for other doctors and researchers to scrutinise.


In other words, if you are given a treatment by a properly qualified medical doctor, you can be certain that every effort has been made to ensure the drug is safe, and that it works often enough to make it a viable option for treatment.


2) Research and investigational treatments


When clinical trials for a treatment reach the last stages, patients can sometimes take part as a research subject. By the time these human trials take place, it can be many years since the studies were begun.




3) Complementary therapy


A complementary therapy is a treatment that is used alongside radiation or chemotherapy, which boosts the immune system, counteracts the side-effects of certain drugs, or promotes the wellbeing of the patient.. There are many mainstream medicines and therapies as well as natural dietary supplements that are considered useful as complementary therapies by health professionals. To see more, click here . This is a page on one of my favourite cancer websites which belongs to the American Cancer Society, www.cancer.org. Complementary and alternative therapies are listed for many different types of cancer on this extremely useful website.


4) Integrative therapy


Some clinics and cancer treatment centres offer Integrative therapy, which is the blending of proven mainstream treatments and complementary methods. The complementary methods offered by these centres will be proven methods of alleviating symptoms and side effects of other medicines, or for promoting the patient's feeling of well-being. Some of these therapies may include herbal remedies known to have a beneficial effect on nausea, such as peppermint tea, or yoga and meditiation to promote well-being, or vitamin supplements to promote immune system health.


5) Alternative Therapy


The American Cancer Society has the following to say about alternative therapies:


"Alternative therapy is used instead of mainstream treatment. Alternative therapies are either
unproven because they have not been scientifically tested, or they have been disproved (that is, they
have been tested and found not to work). They may cause the patient to suffer because they are not
helpful, because they can delay the use of proven methods, or because they are actually harmful.
The American Cancer Society urges patients who are thinking about using any alternative or
complementary therapy to first discuss this with their health care team."


The problems with alternative therapies are myriad. Of course, the main reason for being wary, is that these treatments have not been proven by controlled clinical trials. Any medicine that is put forward as an alternative therapy must be labelled a supplement, and falls under different rules to a proven drug. There is a great deal less control over supplements. As long as the ingredients are on the bottle, and the manufacturer doesn't make direct claims that the product is a 'cure', they generally escape scrutiny. Nutritional supplements do not have to be tested for safety, and one bottle of the product will not always contain exactly the same amounts of active ingredient as another. In other words there are no guarantees that the product will work, or that it is safe.


This is not to say that all companies producing supplements are touting snake oil 'cures', there are many supplements out there which are produced by reputable companies with proven track records.


However, only your oncologist is qualified to say whether a particular therapy will be helpful in your particular situation.


A couple of questions to ask when investigating a supplement are:


  -  Is the product generally available in pharmacies, or is it only available over the internet? If the product is only available over the internet or from an independent distributor it would be best to treat it with extreme caution. Most of these products are the focus of a multi-level marketing campaign; the product itself is not the purpose of the business, the purpose is to have distributors sign up other distributors so that they can earn commission on the other distributors they sign up. You will see that the distributors are almost fanatical about the product, and react very badly to any suggestion that the product may not be all it's touted to be.


   - Does the product promise a cure? If it does, exercise extreme caution. Even a proven treatment with proven results for a good survival rate is not allowed to be called a 'cure'. A cure would completely remove the cancer and it would never come back, 100 percent of the time. There are currently no drugs on the market that can claim this.


   - Does the company use scare tactics, pushy marketing or spam mail? Do you have to sign up as a distributor in order to be able to buy it, or is the product ridiculously exepnsive unless you're a reseller? Are you being promised large anounts of money as well as a cure if you sell the product?


  -  Does the company claim to have a large amount of scientific backup to prove its claims for the supplement? If this is the case, please bear in mind that a lot of the time there may be a case for a particular chemical found in that fruit, or nut, or leaf or whatever the supplement is made from, and that clinical trials may very well be in progress for that chemical. What you need to remember is that just because an isolated chemical may have potential as a cancer drug, it doesn't meant that eating the whole fruit, or drinking the juice or eating it in powdered form is going to have any effect at all on your particular kind of cancer (or your child's in this case). Ask your doctor to have a look at the body of evidence; a qualified medical professional will be able to tell you if the studies are worth anything.


If you answered 'yes' to any of the above questions, please think very carefully before going ahead,, and always follow the golden rule; consult your oncologist!

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.