Special Interest Articles:
- Sms line up and running! Sms LFCANCER to 31222 and donate R10 per week.
- Have a look at our new website! Kindly sponsored by AZAPI www.littlefighters.org.za
- Join our Facebook supporter page, we are aiming to pass the 3000 supporters mark before the end of the year!
Individual Highlights:
Reef Carneson was the youngest child to ever receive a bone marrow transplant in South Africa
very first monthly newsletter!
The Little Fighters Cancer Trust was started in 2010 by Tania Goslett and Thomas Engela. The motivation behind forming the Trust was that within a very short space of time, two families whom they know personally, had children diagnosed with Cancer. From the early days when they aimed to support Childhood Cancer affected families in the greater Drakenstein area, the Trust grew very quickly to offer support to families nationwide. |
The Little Fighters Cancer Trust dedicates this newsletter to the families we support and our supporter base, which has exponentially grown with the help of the Social Media Networks such as Facebook and Twitter. We intend to share the experiences of Childhood Cancer affected families with you, some details might be upsetting, most will be uplifting. We aim to use this Newsletter to continuously campaign for Childhood Cancer Awareness. |
As an awesome Cancer Baby mom, Bonita Suckling said, "Awareness + Determination equals a cure". We hope that you will enjoy this, our first issue, and those to come. For any contributions to the Newsletter or any comments, critique or compliments, please email Mandie Erasmus at info@littlefighters.org.za Pleasant reading and health to you and yours. |
Azapi design comes on board as website sponsor
As anyone in the challenging world of charities will tell you, quite often the very first thing potential sponsors ask you for is your website address. As the Little Fighters Cancer Trust simply believed that the money to put up a website can be better applied to the families of our Little Fighters, we were overwhelmed by the offer from AZAPI DESIGN to create a website for us free of charge. Gerrit Giliomee, Sanet Stevens and Melissa Ricketts worked tirelessly to create a beautiful looking, fully functional and user friendly website. Here is what Gerrit Giliomee has to say, "Azapi supports LFCT because we are aware of the |
emotional stress and hardship cancer can cause on both patients and parents." |
post your poems, letters and inspirational messages to the Little Fighters, so please visit the website and send us your contribution via the "CONTACT US" page's email link. Thank you Azapi, from the Little Fighters Cancer Trust and all our Little Fighters! YOU MADE THE DIFFERENCE! We ask that the Little Fighters Cancer Trust supporters also support our loyal sponsors.
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Don't write your name in the sky, the wind may blow it away.
Write your name in the hearts of people you come in touch with.
That is where it will stay.
Reef Carneson has touched the lives of many
Reef Carneson was diagnosed with Acute Lymphoblastic Leukemia at the age of 5 months. A month into his first Chemotherapy, he went into renal failure, After emergency dialysis, which he survived, he continued with very aggressive Chemotherapy. 3 Months into treatment, he suffered violent seizures and was mistakenly treated for Epilepsy. He completed his Chemotherapy but did not go into remission. It was advised that he would need a bone marrow transplant. There was no suitable donor found in SA and after an extensive search, a donor was eventually found in Germany. Reef was placed in isolation, where he spent his first birthday. All his own bone marrow was killed off with a very high dose of Chemotherapy in preparation for the transplant. He swelled up so badly that he could not sit or even open his eyes. His lungs filled with fluid. He developed Chronic Graft Versus Host Disease, which could be fatal. One morning his blood pressure began to drop rapidly. It was discovered that he was in septic shock from an infection in the lines of the triple Hickman line which was keeping him alive. The Hickman line was removed and he was put on a ventilator. He swelled up again and developed Klebsiella Virus and a fungal infection in his blood. |
At this stage his Graft Versus Host disease was so bad, his body was covered with blisters and sores which tore with every move and the raw flesh stuck to the bedding. As Reef is the only child in SA who has GVHD it seems as if there is no help for him with his skin. It was discovered that Reef did not have Epilepsy, but rather sub-dural bleeds on the brain which because his platelet count to drop too low. For almost a year, Reef needed platelets to keep his platelet count above 50. Once he was home, Reef needed a Heart rate and Breathing Monitor. With the assistance of our kind hearted supporters, the Little Fighters Cancer Trust could have a monitor delivered to Reef. He was once again admitted to ICU due to infections and his mother, Lydia, had to stop breastfeeding Payten, Reef's prematurely born baby sister. Lydia could not have contact with both the children and stayed in hospital with Reef. For most of the duration of her stay, Lydia received food packages from Little Fighters Cancer Trust or meal coupons for meals from the hospital. Earlier this year, Reef had to have all his teeth removed due to the teeth rotting from the various treatments he received. Soon after he developed another infection which once again landed him in hospital. |
Reef could not digest any food and was losing weight at a tremendous pace, at one stage wearing 6-12 month baby clothes. His family was told he needs to have Peptamin Junior Advanced, a hugely expensive form of liquid nutrition. At their inquiry, they were told there was none available in South Africa. The Little Fighters Cancer Trust went on a massive hunt. We found the food in Cape Town. We raised the funds to purchase 5 bottles and had it flown to Reef. Reef is now getting around with his walker and looking really good. He still itches terribly from the GVHD. Reef's daddy, Ryan, went back to working half days as he feels he has to contribute towards his family, he spends the afternoons looking after Reef so that mommy Lydia has only baby sister Payten to contend with. The family needs assistance desperately to be able to buy everything the two baby's need, pay rent, services, medical bills, food and all the things other families take for granted. If you would like to make a donation or contribution specifically for Reef's family, please reference your donations with the word, "REEF". Banking details are on the last page of the newsletter.
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obviously never had cancer
Information on Leukemia
Leukemia is a cancer of the bone marrow, the spongy center of the bones that makes blood cells. It accounts for approximately 35% of all childhood cancers; approximately 1 in 1000 children will be diagnosed with leukemia by the age of 19, although it is more common in children under the age of 10. In leukemia, abnormal white blood cells divide out of control and crowd out the normal cells in the bloodstream. The abnormal white blood cells are not mature, and therefore cannot carry out their infection-fighting function in the blood. These cells crowd out healthy white blood cells, as well as the red blood cells which carry oxygen to the body and the platelets which cause the blood to clot. Leukemia is treated by combination chemotherapy and sometimes radiation. The five year survival rate for children diagnosed with leukemia and subsequently treated is approximately 70%. Signs and Symptoms
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A child in the early stages of leukemia may show some or all of the symptoms above. These same symptoms are also attributed to the common flu; this fact makes diagnosis extremely difficult. Each parent of a child with leukemia has a different story of how the child was diagnosed. But, most parents remember that their child was more tired than usual in the weeks before diagnosis. A child with leukemia may seem to be struggling to keep up their typical activity level or they may not have the energy to do even their favorite activities. Many parents report that their leukemic child had an infection or the flu that would not go away. Looking back, they realize that the child had some of the other symptoms mentioned above as well. Many parents report that they had a feeling that there was "something wrong" with their child: they knew that something was not right but they could not pinpoint what it was. |
What to Do Take your child to the doctor. The doctor should: Check for enlarged liver, spleen, or lymph nodes Take blood for a complete blood test (CBC, with differential) The blood test is crucial to the diagnosis. A blood test is relatively inexpensive, and you should insist on one if you have read the above list of symptoms and feel that your child could possibly have leukemia. If your primary care physician will not order a blood test, go to another doctor. Do not wait: leukemia progresses quickly and must be treated promptly. A child with leukemia will most likely show a blood test with: Decreased red cells (low hemoglobin count) Possible blast cells (lymphoblasts, leukemia cells) Decreased platelets A low level of normal white blood cells Increased lymphocytes Keep in mind that about 10% of the patients with leukemia will show a normal blood test at the time of diagnosis. To confirm that the disease is leukemia, a bone marrow test must be done. For more information on various Childhood Cancers, please visit our website. |
Leukemia Cell:
Illana Berchowitz, one of LFCT's many wonderful supporters
Illana Berchowitz, mother of 3, avid LFCT supporter
When my eldest son, now five years old, was eighteen months, we went to the Donald Gordon Medical Centre as he had to undergo a small procedure. The pediatric ward was situated adjacent to the Oncology Wing by a glass partition. I will never, ever forget the thoughts going through my head as I watched these children walking around, watching TV and playing video games while having treatment. I was dumbstruck, as well as truly devastated. How could this be? These kids are so young, there are so many of them? This vision has never left me, and most probably never will. A friend of mine relayed a story to me about a lady she met whose little boy had Leukemia, I went onto the internet and came across the Little Fighters page. I was once again blown away. These beautiful little faces stared back at me, and as I read each of their stories, my heart shattered. Having my own three children, I know all about the love we have for them, as well as fully understand the many demands of being a parent. |
My heart ached for these parents who, on top of the many stresses we face every day, were dealing with the agony of watching their children suffer, while also trying to make ends meet in the face of the mounting medical expenses. There and then I made a vow to do everything I possibly could to help, even if it would make only a slight difference in the lives of these families. Becoming a member of the Little Fighters page is a great way for me to keep in touch with the goings on in the lives of all these little heroes, and for me to see where I can possibly lend a hand. A week ago I was walking through a shopping mall when I spotted a table where various awareness ribbons were displayed. The gold ribbon was conspicuous in its absence. When I asked the lady manning the table whether she had a gold ribbon for childhood cancer awareness she answered me by saying ‘it's under the cancer umbrella'. This deeply saddened me. Precious children are losing their lives to this disease on a daily basis. |
Action needs to be taken, awareness spread like wildfire and a CURE found! I will continue to support this cause and look forward to a day when innocent children do not have to suffer like this anymore. Until then, I will do my utmost to make a difference in any way I can. Illana Berchowitz" It is thanks to supporters like Illana that the Little Fighters Cancer Trust can continue to assist the families of children diagnosed with Cancer. We would like to take this opportunity to thank Illana Berchowitz for her support, and ALL our supporters, for being incredible in the face of adversity. We can only say one thing:
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Little Fighters SMS line launched and active!
With the assistance of GRAPEVINE INTERACTIVE MOBILE CONTENT SERVICES, Little Fighters Cancer Trust can now boast an sms line which supporters can use as a form of donations. Grapevine has offered LFCT a huge benefit from the subscriptions and each subscription assists our Little Fighter's families. Somewhat disappointing is that not many people seem to subscribe. We really want to use this tool which was given to us with maximum success. |
Here is how it works, no catches, no extra costs: SMS LFCANCER to 31222. Each sms costs R10. LFCT receives 90%! Each sms will earn you a motivational message, sent to your phone from Monday to Friday. To unsubscribe, you simply sms STOP to 31222 |
This is a great way in which you can become involved for a nominal donation. Each little bit helps us help THEM! Thank you to
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LFCT makes Little Fighter's dreams come true!
Xuane Nieuwenhuis is a bubbly 5 year old who loves Bobby van Jaarsveld. Xuane was also diagnosed with diagnosed with Ependymoma. This is a very rare type of cancer but her parents was told that it was Anaplastic and malignant and already stage 3, which means it grows very fast. Her radiation therapy started in March 2010 and continued until 22nd of April 2010. Her operation was scheduled for the 26th of November 2010. She was in theatre for 5 hours and in ICU for 3 days without any fever. She is now on pull-up nappies and she goes through |
13 -15 a day. She still struggles with the bladder infections. She is getting chemo therapy until June 2011. When we were told by Theresa, Xuane's mommy, that Xuane knows all the songs to Bobby van Jaarsveld's songs, that she dances to his music and adores him, we decided to do everything we could to get the two together. Bobby proved to be a real star, not only on stage, but in the kindness in his heart as well. He agreed to visit Xuane at her home. He was a true gentleman too, brought her gifts and sweeties! |
Theresa and Xuane have since also been treated to a specially arranged backstage visit after one of Bobby's shows. This gorgeous hunk seem to have taken a real interest and liking to our Little Fighter! We would like to thank Bobby van Jaarsveld sincerely for making Xuane's dream come true. Please email us if you would like to get us involved in making a Little Fighter's dream come true! |
How to become a bone marrow donor and help Little Fighters like Reef
We have had so many queries concerning Bone Marrow Donations that we feel it is important to spread the information as widely as possible. Registration process: Joining the SABMR is simple: You need to call The Sunflower Fund Toll Free Number 0800 12 10 82 weekdays 9am-1pm or 2-4pm so that we can make sure that you meet the criteria and will then complete your SABMR/Sunflower Fund Application Form with a Reference Number. If you are not able to pay for your blood test (R300 for AB level or R1000 for DR level testing), |
you will be added to the waiting list and when funds become available we will forward your form and direct you to the closest Donor Recruitment Clinic. There you will give them the completed form and they will take a small blood sample – about two teaspoons. Your blood sample is then analyzed (called "tissue typing") and put on the national database. Registered donors will in due course be sent a donor card by the SABMR. Donors will only be called back to donate stem cells if they are ever a perfect match for a patient. The odds of being a match are about 1: 100 000 |
which is why we need as many donors as possible. The donation procedure is minor with little discomfort – a full description can be found on the website. We have compiled a free downloadable PDF document which can be found on the main page for "CHILDHOOD CANCER" Please feel free to read and consider. As the Sunflower Fund puts it: "Share a little, save a life". Here is the link to the page where the informational document can be found: |
Contact us:
Email:
info@littlefighters.org.za
Thomas Engela
Trustee and Founder
+27 (0) 74 886 5125
Tania Goslett
Trustee and Founder
+27 (0) 84 610 8211
Mandie Erasmus
Trust Administrator
+27 (0) 73 729 6155
Donovan Louw
Trust Accountant
+27(0)21 872 8246
Martin Oosthuizen
Trust Attorney
+27(0)21 872 3014
We're on the Web!
See us at:
the cashier's office. ~Francis O'Walsh~
94.5 Kfm sponsors free advertizing spots for LFCT
After an email was sent to 94.5 Kfm asking them to assist LFCT with creating awareness for Childhood Cancer, 94.5 Kfm responded with a sponsorship of short advertisements which will be aired very soon!
So tune in to 94.5 Kfm, The Cape's NR1 Radio Station! We will publish a full article in the next issue of this newsletter.
Thank you Kfm, you are making a huge difference with this kind sponsorship and we hope to have you on board for a very long time!
eSeller Solutions sponsors landing page for LFCT
Andre Kruger from eSeller Solutions contacted LFCT and offered to custom design a landing page for our Facebook page. We were promptly sent a mock up and it is stunning! We can't wait to share the new look with all our supporters and sponsors.
Andre has also kindly agreed to future involvement, but, we will do a full article in the next issue of this newsletter.
Thank you to Andre and his team for being the difference!
What we are able to do with YOUR support!
