Celebrating Heini – Brain Cancer
September is International Childhood Cancer Awareness Month and once again the Little Fighters Cancer Trust is hard at work sharing everything we can regarding Childhood Cancer and trying to raise Childhood Cancer Awareness by sharing information and Personal Stories with you.
Today we are once again sharing the story of Little Heinrich van Straaten (Heini). We have shared his story before, but we feel that we need to share it again as this Little Fighter is still fighting every day of his life as a result of brain cancer.
The Little Fighters Cancer Trust would like to sincerely thank all our Onco Parents that have shared with us in the hope that their stories can help other parents who have children that are ill but are not sure what the problem is, and to raise Childhood Cancer Awareness so that earlier diagnosis can be done.
We will continue to publish more poems and stories by Onco Parents throughout this month as we work hard to bring Childhood Cancer to the fore and spread Childhood Cancer Awareness – all in the effort to inform and educate other parents to the ravages of Childhood Cancer and to remind everyone that
The Best Defence against Childhood Cancer is Awareness and Early Diagnosis
Little (Heini) Heinrich van Straaten went to school like any other little boy when mom Lize had to go to work. He did not play with his friends much, just stood around with his hands in his pockets.
Heini was 3 years old when he started bumping into things in October 2012; he was continuously nauseous and told his mother he had a headache. Everyone thought he was just acting, until it started getting worse. Mom took him to the hospital on the 12th November 2012.
Heini was diagnosed with Ependymoma – malignant Brain Cancer on the 12th November 2012, at the age of 3. He was transferred from George Hospital and flown down to the Red Cross War Memorial Children’s Hospital in Cape Town. Here he underwent an operation to drain the fluid from his brain, and on the 15th November 2012 he underwent a big brain operation of 8 hours long to remove the growth.
Heini was a very strong and courageous boy throughout and displayed great endurance. His treatment progressed well but cancer is a long struggle. The huge challenge of putting such a little boy through all that traumatic treatment and tests took its toll and resulted in his having a very weak immune system. You can read the rest of the early days of Heini’s Story HERE.
Side-effects of Radiation Therapy include Tiredness/Fatigue, Redness, Blistering of Skin, Sore Mouth, Nausea and Vomiting, and Diarrhoea.
Side-effects of Chemotherapy include basically the same as those for radiotherapy as well as Changes in Taste, Rashes, Sun Sensitivity, Bladder Irritation and Infection, Nerve Damage, Stress Fractures, Anaemia, Blood Clotting Problems, and Allergic Reactions amongst others.
Side-effects of Surgery include Pain, Fatigue, Appetite Loss, Infection, Lymphedema, Organ Dysfunction, and more.
The above are however just the side effects during Radiation and/or Chemotherapy. There are also various long-term side effects of the cancer itself and the various treatments.
Long-Term Side Effects
Brain tumours and their treatment can cause physical and mental changes; these can be long-lasting or permanent in some cases. Around 66% of children will have some kind of disability as a result of their brain tumour. The level and extent of the disability will depend on the type of tumour, its size and location, and exactly how it was treated.
The reason we mentioned some of the side effects of Childhood Cancer and Childhood Cancer Treatments above is so that you can get an insight of what Heini and his mother (his father died when Heini was just 1 year and 4 months old) who looks after him, go through every single day of their lives.
Heini has undergone brain surgery on more than one occasion, and has also had radiation and various other therapies. Unfortunately his brain tumour returned and he cannot have any more radiation due to a severely compromised immune system.
Heini suffers from “Absence Seizures” (Epilepsy) and has at least one fit every morning; he suffers from coordination and muscle control problems; he regularly gets excruciating and blinding headaches; he has lost the sight in one eye and can barely see out of the other; he suffers from an inability to concentrate, forgetfulness, and various other cognitive problems.
Heini cannot live a normal life; he cannot go to school, he often cannot go out or have friends over due to his impaired immune system, and he will need to wear diapers at night for the rest of his life, as he has no control over bodily functions. Heini also needs to go for regular occupational therapy.
Last week Heini and his mom drove down to Cape Town as he had an appointment at the Red Cross Children’s Hospital where they did a battery of tests again to see what they could do to help him.
Unfortunately the prognosis was not good – the doctors told Heini’s mom, Lize, that they can do nothing more for him and have referred him to the Brain Tumour Clinic at Groote Schuur Hospital (GSH).
Heini and his mom will once again have to travel all the way from the Eastern Cape to Cape Town next month as he has an appointment at GSH on the 28th October. The doctors want him to just rest up a bit after the long drive down and the trauma of all the tests at the Red Cross Hospital then they will do more tests and see what they can do for him at Groote Schuur.
This is a really heart-sore case, as this brave Little Fighter has been fighting for so long now already, and every day the fight continues. It is seriously not fair that such a little chap who always has a smile on his face should have to go through so much pain and misery every single day of his life.
Lize’s health has also taken a toll as she is not able to work because she has to look after Heini and this, together with all the medications, treatments, traveling and everything else that is necessary to help a Child with Cancer means that she is totally broke – add to this financial stress the stress of trying to help your child with cancer while feeling absolutely helpless to do anything, and in my book she is a Grade A Heroine!!
Here is a little note that we swiped off Heini’s Facebook Page (and translated) , written by Lize
My Dearest Heini,
I just want to tell you that I love you so much. I have learned so much from you over the past while. I complain unnecessarily and you always laugh – you are such a good example of a truly brave warrior.
No matter what happens, I believe that you will get healthy and will still make me laugh a lot and will laugh a lot at mommy.
You are your mother’s whole world. Thank you that, in spite of everything, you still take life as it comes, and that I can learn that from you.
Posted on 27 September, 2016, in Blog, Brain Cancer, Onco Parents and tagged brain cancer, brain cancer awareness, Child Cancer Awareness, childhood brain cancer, childhood cancer, Childhood Cancer Awareness, Heroes, Little Fighters, Little Fighters Cancer Trust, paediatric cancer, Pediatric cancer, pediatric cancer awareness, side effects, south africa. Bookmark the permalink. Leave a comment.