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!