To whom this may concern, I feel I need to let you know how concerned I feel with regards to Oshin’s mental & emotional well being. I am of the understanding that professionals are not emotionally apt to consider, ask or even delve into the questions of how are you feeling Oshin? About this procedure etc & highly likely he may not feel safe to share his fears & emotions with these professionals who have inflicted great pain & to Oshin a form of torture. However I am his mother & I have that privilege to ask how he is feeling at any given moment & help him process best he can what is going on for him. I also ask my girls how they are feeling at any given time & I feel it may help identify feelings, which unchecked & not expressed or heard can lead to problems later in life. I have an understanding of this as my biological mother died of cancer/treatment when I was 6yrs. I had an abusive family member & father who didn't know how to be there. No one ever asked me as a child how I was feeling? I was confused, abused, not in loving arms, I felt unsafe, always cried at school & I felt very scared. I have grown up with a challenging & often sad life. It is precisely from my own experiences that I have always tried my hardest to do no harm to any other human being, not to inflict pain, not to intentionally hurt others or verbally abuse others. I am not perfect but I align myself with integrity, honesty to others, love & kindness & a very overwhelming feeling of helping our fellow human beings especially those with no or little voice. My experience as a child & growing up has been so hurtful by others that I would not like to ever be part of something that leaves anyone feeling less than, scared, hurt, abused or unloved. You may believe I am over sensitive & its possible I am, but I would rather be sensitive to others feelings than insensitive & heartless of others feelings. I have always tried to give my children especially what I didn't have as a child. All 3 of my beautiful children attend a beautiful school; we also have a beautiful community of parents & teachers. The child enters the school & is provided with unconditional love, nourished as an individual & also encouraged to be who they are, yes there is strong boundaries set but the teachers that teach are there because of the love they have for instilling the best of themselves they can give to each individual unique child, they are not there for a pay cheque! Even our family day carer educates the children on feelings & helping young toddlers identify their feelings. What I am trying to convey to you, is that worlds collided when Oshin was diagnosed with cancer & my/our experience with the oncology ward staff. I had not been in a position where it was certain life or death to protect my child. I am knowledgeable to a certain degree about cancer & its treatments. What the oncologists were telling me did not line up with what I have seen in my life, I have been part of the care for some clients undergoing cancer treatment & also cared for my beautiful step mum who did not have treatment but died of stage 4 pancreatic plus many secondaries, we also went out to lunch a week before she died 11/11/14. Since I was 16yrs old I have worked with physically & mentally disabled people in my community, I have also worked at the quadriplegic centre caring for many people with differing diseases. I was disgusted there too how staff deliberately treated their patients who are living there & it is their/our duty of care to help make them feel safe & at home. I have complete admiration & compassion for all the precious people who had to endure daily trauma from staff on top of an already challenging life situation. I will also admit I have no understanding of how the law works. I also didn’t realise that when under oath or putting fourth an affidavit that it was ok to be dishonest to achieve a result wanted. I have been told since from another lawyer that this is what happens, medical professionals lie, judges may lie, lawyers may lie & that life is not fair. Of course I understand life is not fair, but even when the oncologists lied to my face I did expect them to be honest at least under oath. I didn’t really understand what happened on Friday, I don’t know how that law works & I am still trying to process it in my mind. It has been an extremely difficult 6 months & not something I would wish anyone would have to go through. What we have endured for no good reason is nothing short of horrific. When Oshin was an inpatient after surgery I spoke to the oncologist & asked if Oshin could have chemotherapy only? His answer was no he has to have both! When I asked the oncologist could Oshin please have the radiation without the extra chemo (cistplatin) with it? He said no! Iv just decided he has to have both! Over 6 months later Oshin is receiving Chemo only, but unfortunately due to the oncologists unwillingness to come to an agreement we both could accept, the chemo only has come too late to be able to give Oshin a real chance. It is possible that it was not the greatest idea to place a forced chemo sign above Oshin’s bed, the fact remains it was forced & Oshin was non the wiser he didn’t understand what was going on. Previous to Easter Sunday he loved coming to the hospital as he had physio, OT & got to play on level 7. With regards to the media, Oshin had no idea of what was going on & it was actually a concerned father who was worried this could happen to his own child that contacted 60 minutes, then I started receiving all sorts of media messages. I have not been in this situation before & had no idea what they where like, now I have that experience I understand that they try to sell themselves for their own personal agenda & gain. I would also like to note that the girls are at a school that support & know the truth about what happened between Oncologists & myself & they have been very supportive. Our whole family have been so busy trying to get through our own lives that we have little idea of what has happened since I chose to go public. We have been shielded from the media, as there has been no time for such things. The one & only reason I went public came from a place of love, I knew damn well some would think I was crazy & not knowing all the facts & with the help of creating a fictional character provided by oncology affidavits, it may look that way. I would say if their affidavits were true & correct they simply would not have a case, so really what choice did they have? They chose dishonesty in disguise of having Oshin’s best interests at heart. If indeed that was true then why wasn't the chemo only offered before they had gone to court behind our backs? The reason why I asked for palliative was because it was the only option the oncology staff had that had the most chance of chemo only in it! I chose to go public because I did not want any other child & family to have to go through what these professionals put us all through! The world is not fair but if there is any hope I can create some good from a terribly bad situation I will. Since going public I have had messages & letters from parents who have been threatened by oncologists from this hospital, lied to, chased, children’s lives & parents lives destroyed under the guise of having their child’s best interest at heart. The hospitals oncologists have done many wonderful achievements & have helped many with cancer, which is great. I was under the impression the oncologists are there to help every child diagnosed with cancer & their families, not just the ones who immediately hand their child over to them. I have spoken to a member of parliament, a beautiful man who worked in palliative care for cancer patients for a very long time. This humanitarian recently did a speech in parliament about this case & that this is not an isolated case. We also spoke on the phone & discussed possible ways to help children & parents in Oncology. I reflected & told him nothing would change if the oncologists keep lying, I also said you cant force a person to be honest. This genius came up with the suggestion of a "Parents Advocate" which is a brilliant idea & would be so helpful for parents, who at the moment have very little to no say in their child’s treatment. If it is the last thing I do here on earth it will be to help provide support for children & parents of cancer diagnosed children. If I said & did nothing & let the court ordered chemo carry on quietly, knowing very well they were out to radiate him, then I believe I too would be part of the problem. I am concerned for future children, my children's children, any & every child deserves the utmost in such a traumatic diagnosis. It almost feels like we have lost touch with humanity. Why is there so little compassion from oncologists? If we don't bother or care how a parent is feeling then I suppose why even ask a child how he/she is feeling. Lets just treat them & they can work the rest out themselves, after treatment of course. This is a very sad space if this is what we have come to accept as normal & ok. I also would like to make a very important & valid point. The affidavits given by oncologists & clinical staff do not accurately describe me or what happened. They have painted a picture of someone who is not what they say. I did say to the staff I did not want to be part of restraining him but let it be known I was always there to love him, comfort & try to soothe Oshin. I have not said negative things to Oshin about the chemotherapy treatment he was having. Oshin has always been scared of blood & does not understand that he goes into hospital seeing what he feels like is well & comes out sick & sore. Oshin’s fear of all procedures forced on him has not been created by me. Oshin is actually scared & does not understand why they do these invasive procedures to him, he does kick & scream & yell at them to stop, but also now understands that they will restrain him to do what they need to do to him. That being the case does not mean that he stops being combative, Oshin is filled with fear & anxiety every time we now have to go to the hospital & cries & asks what are they going to do to me now? I am sure you can relate as an adult having fear in the mind & sometimes the mind makes it bigger & far more scary than it actually is rather than being able to let go of the preconceptions the mind creates. We are talking about a little 6yr old boy who has had brain surgery, brain cancer & now chemo brain & body. I am still in shock & trying to process this, I cant. How can I accept something that makes no logical sense? For Oshin all being considered how could he process this traumatic experience? We do bribe him to be compliant by saying we will go to the toy shop after we have gone to the hospital. I would also like you to know that Colin & I have had to become part of restraining him for procedures, at times we have needed 4-5 staff help restrain him. Last Thursdays blood test, MRI & lumbar puncture was traumatising for me to witness & take part in. He kicked me & yelled & cried about the nurse getting blood from his finger. When Oshin had to go under GA he cried & cried & tried to escape the mask & I did my best to soothe him & let him know it was ok, even the anaesthetist was apologetic & asked if I was ok when he finally went under. When waking up he was scared & angry as usual & had to take him down to oncology for the nurses to flush his port. Same distressing scene, he is scared of that port that goes directly into his body & doesn’t want anyone to touch it or look at it, not even himself. That is why we have to bed bath him. This is a weekly procedure to take off sticky covering & clean port & redress it. He was so worked up, we had to try & calm him so he could take a breath. As Oshin's mum I believe I feel his trauma more than others & it breaks my heart, at the end of this procedure the RN told Colin she felt really sad & sorry for Osh. I wish you could see him under such stress, once again combative & the trauma & fear in his mind that does not understand, he gets so worked up, sweating, screaming. It is not me who has created this feeling; this is how Oshin is feeling. A RN last night said she believed Oshin has PTSD, which she said is not that unusual just some children cope better with treatments & medical procedures. I felt so sad staying the night in in oncology ward with Oshin Wednesday night, I asked the oncologist (from court) if he would please be able to have a chat with me? He said not tonight, you’re in here for a few days aren't you? I will catch up with you soon. I still have not seen him make an attempt to make himself available. There was a mother crying & howling in tears of pain & sadness, I watched the staff carry on with each other over normal life stuff. I couldn't help think isn't there a human being available here to console & help guide this mother seeing she was in such emotional pain? (I met her later & talked & consoled this beautiful frightened mother). I still remember Monday night, the night before Oshin was told to come in for next round of chemo. Colin & I chose not to tell him that night/day as i didn’t want to upset him & thought it best he enjoy his time at home. I also always take into consideration with Osh that he has brain damage from surgery, that he has cancer in the brain that ultimately affects his brain & brain function, plus the chemo agents that have been administered & of course his feelings of trauma. The Monday night he asked me to help him jump off the side of the bath, which I did. Oshin also held hands with me in the lounge & begun trying to skip. He ate lots of food & we all shared lots of cuddles. At home Oshin sleeps with me & Shilah & I was going to savour every moment cuddling him through the night & so I did, I believe he knew something was about to happen, as he was extra cuddly all through the night. I love those cuddles. In the morning still in bed Oshin asks me "where are we going tomorrow mum? (Meaning today, his face was turned away from mine) & he repeated as i said not a word "where are we going tomorrow mum? Tell me!" I said that we need to go to hospital. I will not ever forget the curled up cries of my dear sad & scared boy. I tried to comfort him as that is what I yearn to do but he punched & kicked me. Told me reasons why he should not go. If this treatment was going to make him better then I would be able to see how I could help him with the trauma later & that it would all be worth it. He was just starting to get better from the chemo too, walking, playing, making jokes being advenurous. I so wish I didn't have to take him in that day. Seeing as the oncologist wont talk with me, I met with Oshin’s new oncologist yesterday, who is really kind hearted. I was concerned about misinformation about Oshin’s treatment plan & needed some reassurance. I felt unsure about the information & diagnosis I was given by one oncologist compared to the notes from another oncologist. In the judge’s notes, they are different & I felt a sense of worry. In WAs oncologist chemotherapy protocol it stated high doses of methotrexate in cycles 1, 3 & 5. The other Eastern States oncologist said he did not know what protocol Oshin was on for last 2 cycles, so I felt worried that the Eastern States oncologist didn’t know, but suggested a protocol without knowing the previous cycle. Oshin’s new oncologist did say he would contact over east & that the methotrexate in all 3 cycles would generally be ok. I also showed him the table of deaths by this chemo treatment & he said we can’t predict weather Oshin will die from treatment or treatment related illness. I said to Oshin’s new oncologist to please let it be known I would much rather Oshin die from the cancer rather than the treatment for his cancer. The oncologist said they weigh up the pros & cons of treatment. I am very sad about our treatment but I am broken hearted watching Oshin go through agonising pain from treatment & telling the nurses he needs to go home to his big sisters. If the chemotherapy protocol was taken up 6 months ago he may have had a chance, but due to such time delay I believe & feel very strongly in my heart that Oshin's best interest right now would be to get him out of the hospital bed were he just lays & plays games. I would so love him home with his family, feeling secure, feeling better, eating, cracking eggs for baking a cake, trying to skip & jump, playing with his sisters, calling out for the food he craves, seeing a specialised Dr to help with his trauma & just to be loved & cared for. Since his prognosis is so poor & we do not wish him to be radiated at such high levels & the possibility of dying from the treatment. I feel its more important than ever Oshin gets his needs met. You may say they are my needs. I cannot remember but I assume you too are a parent, I ask you have you ever felt a strong connection to your child that no other person could understand, nor have with your own child? Mother-child intuition, connection & deep love is like no other. You may have formed a judgement of me already & you might be right but you also could be wrong. Oshin is my only son & he has always been the light in my life. I love him like no other. I definitely do not want him to die, my grief would be immense & overwhelming, but watching him suffer & be in pain I believe would be a far worse way to die. Oshin's kindy teacher visits him at home & as he missed his very special birthday celebration at school due to chemo, I would love him to experience the magic, awe & love of friends around him at kindy, If he is able to walk this will be a far greater experience for him. I would be interested in your thoughts about this & hope you may be able to open your heart & mind to receive a glimpse of my deep love & hope for Oshin. Love & Kindness Ange (Also, I have photographed the bruises after he was restrained by 5 staff and his legs tied with a sheet. If any parent did this to their child, they would more than likely have the child removed from their care due to physical abuse.)