Hi all. Thank you all for your ongoing support. As you know the recent 'win' was a very shallow one. There was at one stage a suggestion put forward by a senior oncologist over East, saying that he may consider 2 more rounds of chemo, then allow palliative care. Ange said as a last resort, she may be prepared to accept that, if there was no way out. The oncologists all agree that chemo will not 'cure' Oshin's brain cancer, yet they insisted to the judge that they still be allowed to proceed with these "last two" rounds. He has had one of them. Here is Angela's letter, asking Oshin's medical team to please, please acknowledge how poorly Oshin is dealing with the high dose chemo regime, and that another round will not be of any benefit at all, and will only serve to further traumatise and weaken his already broken body and spirit. The oncologist's response was - "oh no, there was never any intention for the next round to be the last. It's now about 'disease control' - 'curative intent' is out the window". In other words, we'll just continue to 'treat' him til he dies. Please note also, that when you read Dr W's retort to her saying "I normally only have to do this for aborigines", this in no way reflects Angela. She was horrified that he said that to her, and continues to be. It's just another indication of the one-eyed arrogance at play. Please also note that although palliative care is often given in conjunction with high dose chemo, and even radiation - it encompasses emotional, psychological and spiritual support for the patient and his family - none of this has been made available to Oshin or the family. In fact the hospital social worker told Angela that the support they do have on offer "wouldn't be suitable for this family" . Tuesday, 7 June 2016 11:15 PM To Oshin's Care Team, Dr W, Dr G & Ms M, My name is Angela Kiszko, I am the mother of Oshin Kiszko currently being treated at PMH Oncology Ward 3B. This is my submission, it is in Oshin's best interest that he medically, psychologically, spiritually, physically & emotionally most urgently requires a supportive palliative team care approach to his healthcare. I feel that the oncology department has not honestly implemented care or treatments that are in Oshin's best interest. While Oshin was an inpatient after surgery in ward 5A & I was given the recommended treatment for Medulloblastoma by Oshin's health care team. I made a phone call to Dr W asking him if Oshin could please have chemotherapy only? Dr W's reply was "No! He has to have both!" I am of the understanding that Dr W was fully aware of my concerns for Oshin having radiation to full brain & spine. It comes to my mind that perhaps Dr W, knowing that radiation concerned me so much & with valid reason; I wonder if 6 months ago maybe in Oshin's best interest Dr W would have thought we could come to an agreement that I am comfortable with, so that Oshin could begin chemotherapy treatment as soon as possible after surgery, so Oshin would have the best possible chance of a 'cure'. This was not the case. Dr W threatened me, (If I left WA he would “call his friends, come & get me & hopefully come to some agreement”), harassed me, used strong emotive fear tactics (his brain is going to explode, he will die within 2 months, he will have seizures & be back in for surgery), abused me (he only usually uses the ethics board for aboriginals & that I was lucky he only rang the PMH ethics board), lied to me (too many times to mention them all). To say the least this was a very sad attempt at looking out for Oshin's best interest. Who knows if Oshin commenced chemotherapy 6 months ago Oshin's prognosis for cure would likely be much higher than what it is now. Ms M I am well aware of your dishonesty even though you have always been pleasant to my face, but I am definitely unsure of your ability to have Oshin's best interest at heart. Most recently referring to when Oshin had mucositis & had very visible ulcers around the outside of his anus & was hospitalised for at least 4 days. When the judge asked you how Oshin was coping with the treatment you said, "He had a sore bottom!" Really? Oshin was traumatised by that pain, he would try to hold his poo in all day as he was so frightened of the pain he had been experiencing. Oshin is still scared. I feel you have down played Oshin's physical symptoms to the court & his intense emotional distress. Dr G, the happy one, I always thought he is so lovely, always so cheery, no wonder you are nick named xxxx. Surely you would have Oshin's best interest at heart, being the head of paediatric brain cancer. I would have thought if you had Oshin's best interest, then being head of the department you would be overlooking all Dr W’s interaction & progress with Oshin & likely be concerned as to why treatment had not started & try to ascertain how we can reach an agreement for little Oshin. I was certainly surprised to see you under oath telling the court that you would never radiate a child's brain under 3 years old, you were sure about that one. But after the court hearing on the Friday I received a text from a patient’s dad congratulating me, then I remembered that patient was only 2 years old when radiation was commenced on his little brain. That little darling is not even close to late effects. To be honest I was so heartbroken by all the dishonesty prior to court, but also the absolute lies to make a case out of us parents so you could treat Oshin with everything & in saying that I am sure that was in Oshin's best interest also. Oshin's care team & PMH have totally mismanaged this case! There has been no support, no counselling, and no respect for our entire family. Amitiel & Shilah are traumatised themselves by all the events played out. Our family unit has crumbled. The local community, and wider, cannot believe or even understand why you have mistreated Oshin & his family to the extent you have. I have since been contacted by other parents, whose lives’ have been made a living nightmare because of similar bullying and generally poor treatment. Dr S, I thank you & respect your valued judgement to have decided to remain outside of the court proceedings & wanting only to be there for Oshin. I spoke to you last week about my concerns regarding the high dose chemo, and how it differs from the protocol stated in court was being followed, and I showed you the table of deaths by treatment or treatment related illness. You honestly replied that you never know how, and which child will respond that treatment, but you try to weigh up the pros and cons. I said please let it be known I would rather my son die from cancer than the more horrific and traumatic death from the treatment. Already it is obvious that the treatment has gone way beyond the realm of therapeutic. As for my beautiful son Oshin it is far from his best interest to commence the next round of chemo! We all know it is too far out of surgery for Oshin to have a chance of a cure! Since the 3rd round of high dose chemotherapy Oshin has deteriorated in so many ways & the quality of life he did have even just before the 3rd round has gone. Oshin is very sick from the chemo, he is still frightened to poo, has mucositis which is very painful for him, not interested in eating, very angry, sad, confused, he cannot walk a short distance at home, can’t play with his sisters, has nightmares, wakes up screaming from nightmares or extremely painful ulcers around his anus. He has no immunity now so we cant take him out, he is terrified of his port, terrified of the procedures, scared to go to hospital, does not want to be in hospital, Our little Oshin is a very mentally traumatised boy, emotionally distraught & physically very sick. I have noticed after each round he loses something of himself, but particularly this last round he has lost far too much to have any quality. I find watching & helping him through this is the saddest most heart breaking experience. Oshin is indeed in pain & suffering so much with nothing to gain. I feel that the chemo that comes far too late is just needless torture on Oshin. Our family feel so torn, worn out, sad, angry & in absolute shock with the way we have all been treated & watching Oshin suffer so horrifically for no absolute reason just makes us all feel sick. I am now asking you, Oshin's care team, to actually reflect on what parts you played in this & actually think about what would be best for Oshin now! After all that has been said & done do you feel it is vital Oshin go through a slow agonising deterioration till death? I believe you owe Oshin the chance to gain back some quality of life, give him time to receive therapy due to all the trauma he has been through, remove unnecessary invasive procedures, give him the opportunity to be a child again, at home where he feels safe & surrounded by all who love him so dearly. Now is the time you have the opportunity to honestly give Oshin what he hasn't had yet & that is his health care team giving Oshin what is honestly in Oshin's best interest.