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/