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.