28th December its all over but who fu**ing cares RIGHT!!!!

www.facebook.com/oliviasvoice
Born in February 2014, Olivia has come such a long way already, and given the time and healthcare she needs, Olivia will recover further and grow so that Mommy and Daddy will be able to enjoy the cuddles they crave every day, free from tubes and IV drips.
Olivia was born 3.1 kgs (6.83 lbs), a very normal weight. By April, when she came off dialysis, she was 2.2 kgs (4.9 lbs). By mid-May, after being fed breast milk and fortified breast milk, she got to 3.9 kgs (8.6 lbs)! Since then, with the infection episodes and the critical illness episode mid-July Olivia lost weight and muscle mass, and at the beginning of September she was about 2.9kg (6.4 lbs).
Olivia was born with a cancer called Neuroblastoma 4S, all her other organs are healthy to everyone’s knowledge. Genetic tests showed no genetic disease. A liver biopsy showed that, in spite of the previous scarring from the neuroblastoma tumours and the cholestasis due to the effects of the intravenous feed, there was plenty of healthy liver left and there is no reason why it should not regenerate. She has no terminal and no incurable diseases.
What currently is threatening her life since May 2014, however, are recurrent infections caused most likely by bacterial translocation from the gut into the blood stream. In other words, when Olivia is bloated, the bacteria from the gut leak into the blood stream causing an infection. Her growth and nutrition were possibly affected by this. In the last few months she had several of these episodes of severe blood infection which caused her all sorts of problems; her blood pressure dropped thus her kidneys were not receiving sufficient blood and she stopped producing urine; she needed drugs for cardiovascular support; she became very overloaded with fluids and needed high ventilation/breathing support; she needed dialysis [CVVH]. This is more or less what happened most recently around the 3rd of December. On several occasions she had lung bleeds when she had a severe infection. In medical terms, the infection episodes caused her to have multi organ failures. Most of the time changes to her feeding caused bloating, and possibly bacterial translocation and blood infection. As a result, our baby lost a lot of weight and became very poorly.
We recognize the limited expertise in treating Olivia’s condition and the fact that limited governmental funding also places a limit on the treatments our daughter can be offered. We are grateful for the help she has received so far, but recognize that, with a 2 week limit on her treatment, we need to reach out to you to help us transfer her to a hospital which is able to complete her treatment before it is too late. Two weeks is not enough for Olivia.
Olivia is now off dialysis/CVVH and off the oscillator, her kidneys are working as expected and she is on a normal ventilator. Her swelling has gone down; she is moving about, making eye contact as expected. She is showing a lot of promise to beat the infections which have been plaguing her. While she has just started to see improvement, the calorie intake she was prescribed, was reduced recently, and she has not been able to show the weight gain she should be seeing at this stage. The recurring infections, malnutrition and treatment restrictions are the biggest risk to her life and we are praying that we are able to give her access to the healthcare she needs to help her recover. We really hope you can understand our fear at the moment, we feel it would be a crime to give up on her, to not give her a chance to recover after she has fought so long to stay with us, the very thought of switching her ventilator off and watching her pass away at this stage, kills us.
We beg you to look into her beautiful eyes and see the desire for life we see in it. Olivia has never ever been in a vegetative state, she does not have any neurological damage. She loves life, she loves to learn, she communicates and interacts, and she relishes attention. We know this as we have been by her side every day of her fragile 9-month life and we see the improvement she has shown and the improvement she is capable of. While the medical team helping her overcome the cancer are absolutely fantastic, we recognize the government hospital’s limitations when it comes to the costs of specialist intensive care treatments.
Our baby is currently unable to benefit from the new treatment plans recommended by a second opinion because the 2 weeks restriction is just too short. She is also refused further dialysis/CVVH if she ends up needing it again. We beg you to help us change this, we beg you to help us save our daughter.
If, for any reason, any funds are not used on her treatment, we will return them or donate to a charity of your choice.
 Thank you and God Bless You All!
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A summary of Olivia’s medical history is provided below:
Oncology & Respiratory: The neuroblastoma started in the adrenal gland above one kidney and had spread to the liver. Because of the enlarged liver and abdomen Olivia needed to be ventilated since birth. Though she is still on a ventilator, she has been breathing comfortably through a tracheostomy since August. She has a good cough and doesn’t need deep suctioning. She knows how to swallow safely and has even sucked from the bottle. She does not have oral/food aversions, although when she is fed this is usually through a tube straight to the stomach. The neuroblastoma is in remission with minimal chances of relapse. Soon after birth Olivia underwent chemo and a procedure called embolization to block the blood supply to the tumours from the liver, as a result the tumours have shrunk down and calcified.
Olivia needed platelets and other blood products to improve the blood clotting.
Cardiovascular: One tumour has been pressing on Olivia’s renal arteries reducing the blood flow to the kidneys which caused her to have high blood pressure which in turn caused part of her heart muscles to become thicker because they worked too hard. The thickening should slowly solve. She had an angioplasty to stretch the renal arteries and get better flow to the kidneys, which helped. She also receives drugs to reduce the blood pressure when it is too high. It is possible that she might need another intervention if the tumour affects blood flow to the kidneys further.
Renal: The chemotherapy might have affected Olivia’s kidneys and this is possibly why she needed dialysis [CVVH] for about a month after the second chemotherapy dose. After that her kidneys worked with diuretics. It is not known exactly how much damage the kidneys have suffered but from what we have seen when she has no acute infection, she passes urine with some diuretics. The diuretics themselves had some negative effect on the kidneys. Once Olivia grows, her kidneys should be fine.
Gastroenterology & Infection: In May there was a suspicion of bacterial translocation which in simple terms means that when Olivia is bloated the bacteria from the gut leak into the blood stream causing an infection. Her growth and nutrition were possibly affected by this. In the last few months she had several of these episodes of severe blood infection which caused her all sorts of problems; her blood pressure dropped thus her kidneys were not receiving sufficient blood and she stopped producing urine; she needed drugs for cardiovascular support; she became very overloaded with fluids and needed high ventilation/breathing support; she needed dialysis [CVVH]. This is more or less what happened most recently around the 27th of November. On several occasions she had lung bleeds when she had a severe infection. In medical terms, the infection episodes caused her to have multi organ failure.
Surgical: In April, possibly due to the scaring caused by the calcified tumor, her lymphatic drainage was affected which resulted in the lymph/fluids collecting in her abdomen and around the right lung [ascites and pleural effusion]. These fluids were drained around the end of May and she was only on intravenous feed [TPN] for a while. On the 13th of May she had a surgery to insert a Denver shunt to drain the fluid from the abdomen to a blood vessel close to the heart. This is a plastic tube with a small pump which goes under skin. It does not hurt and it is effective.
Liver: Olivia’s liver was scarred by the neuroblastoma tumours, and she had some cholestasis due to the effects of the intravenous feed. She had a liver biopsy in June and, in simple terms, the report says that there is plenty of healthy liver and no reason why it should not regenerate.

Thank you