The time of January and February 2010 was one of the best, the sunniest and the most fun adventures for Kezia and her family; it entailed numerous trips with friends to sunny beaches, staying at holiday homes and playing in the water. She had a 4th birthday party at home in April with all her little princess friends. After this point she slowly deteriorated She was having increasing difficulty climbing into bed, a progressive lack of appetite, and complaining about pain in her chest and legs. After a number of misdiagnoses in the emergency ward at Starship, Kezia was finally diagnosed in mid June as having neuroblastoma – a rare solid tumor found in young children – that had spread throughout her body. It was classified as stage IV, high risk, with a very poor chance of survival.
Upon this diagnosis Rebecca and Adrian asked the diagnosing paediatrician specifically about high-dose IV Vitamin C – this was disregarded as unproven, a waste of time and possibly even unsafe. After the preliminary diagnosis, a brief meeting was held with the Starship paediatric oncologist to confirm the condition and offer expert advice as to the best course of treatment. Only a single treatment option was presented with sparse detail as to what this might actually entail. If this option was rejected “she will die within 3-6 months… it’s 50/50 that she makes it… the only option is chemotherapy… and it must start immediately…” When alternative therapies were asked about, none were offered or even known to the oncologist. Despite the wording on the permission form – paying lip service to having enough time to consult family/whanau – it was apparently paramount to decide and sign on the spot.
When Rebecca and Adrian suggested taking Kezia home for the weekend before life was forever changed, the director of the department was called in to counsel them regarding the urgency of the situation, “she’s slipping away…” So with all of 10-15 minutes alone (plenty of time to reflect, consult family, look at other options…), Rebecca and Adrian, in shock, prayed, and then agreed to commence the induction phase of a new “clinical trial” of chemotherapy. One last happy event was when Kezia made it to Aunty Hayley and Uncle Matt’s wedding two days before the chemo was to start.
Treatment was proposed as having three phases. Induction: consisting of 6 cycles of high-dose chemotherapy over a six month period. Consolidation: either one or two cycles of high-dose chemotherapy, followed by bone marrow transplant. Then Maintenance, consisting of long-term chemotherapy, with the possibility of other “clinical trials” like Ch14.18 as immunotherapy. The treatment is incredibly hard on young bodies.
The chemotherapy consists of IV administration of chemical mixtures, with the intention of destroying the fast-growing cancer cells – while also destroying other healthy fast-growing cells, wreaking havoc with numerous horrifying side effects, including the known likelihood of causing further cancer. During the treatment nurses continually monitor the children, with doctors observing in a very clinical manner. During the six cycles of treatment Kezia required over 20 transfusions and her gut was so damaged that she could not handle even the most basic feed via a nasal-gastric tube and was put onto TPN (total parenteral nutrition) to get basic nutrients through her blood (IV).
She was in so much pain that she was on morphine, tramadol, paracetamol and ketamine in the maximum doses allowed – her heart rate dropped so low during this time the nurses were worried she would not make it. At another time her heart rate was over 220 beats/minute while lying in bed – they were on the verge of sending her to ICU. Each phase of chemo caused massive damage to her body; all her organs were damaged, and her hearing is partially lost. Every cycle caused the destruction of her immune system. This required massive amounts of antibiotics and pain killers to help her through. One morning at 5am the teenager in the next room died of chicken pox. One sneeze, one small cut on her foot meant days of treatment.
Throughout the six months of treatment Adrian and Rebecca had a number of issues with the hospital. These related to access to information, the attitude of doctors and management, problems with the dietitian and incorrect procedure around protocols for cytotoxic chemotherapy drugs.
During Kezia’s time in hospital, she had at one point, only had food only though her nasal-gastric (NG) tube (a thin, flexible tube taped to her face, fed through her nose straight into her stomach) for over two months. Adrian and Rebecca queried her weight and the quantity of feed she was getting. Their external research indicated that she should have been having 1200-1500mls of feed per day, yet she was only prescribed 640mls by the oncology ward’s paediatric dietitian. This issue was taken to the ward director – and the next day, surprisingly, a different dietitian turned up and advised that Kezia should have 1200-1500mls of feed.
One of the cytotoxic chemicals, called cisplatin, is widely known to cause hearing damage. Approximately one in four children receive partial or permanent hearing damage just from the use of this chemical. The protocol surrounding cisplatin is very clear: hearing must be monitored very closely before and after any dose of cisplatin to check for any loss of hearing. If there is any hearing loss the dosages must be adjusted to ensure no further hearing loss is sustained. The only hearing test was undertaken during the very stressful time of diagnosis just prior to the first dose of chemotherapy (that did not include cisplatin).
After the first dose of cisplatin Rebecca noticed some issues with Kezia’s hearing but put them down to Kezia being unwell. After the second dose of cisplatin Rebecca noticed that Kezia was not picking up some new words correctly as she was read new stories, nor could she hear the high-pitched beeps of the machines at the hospital. Subsequent hearing tests (at parents’ request) showed more than 25% damage to her hearing and that it would be permanent. No intermediate hearing tests were undertaken or requested by any of the doctors.
After the induction phase’s final dose of chemotherapy, Adrian and Rebecca were expecting the usual immune system crash. This did happen but not to the same extent as in the past – thanks to prayer (God has been so very present through all the ups and downs) – yet Kezia managed to cut her foot; a tiny scratch which caused instant infection, tracking up her leg. Adrian rushed Kezia into the Oncology Ward at 8am and showed the ward nurse, who then advised that a doctor should look at it later in the day, when Kezia was due back in for a blood transfusion. Rebecca brought Kezia back in at midday for the blood transfusion and then met with an oncologist who said “you can either go to you GP or Starship Emergency dept to get some antibiotics.”
Rebecca, having spent countless hours in the hospital over the last months and not wishing to be there any more than reasonably necessary – and based on the lack of alarm in the doctor’s tone – booked a 4pm time with their GP. At 4pm the GP was so alarmed she called Starship Emergency to advise that Kezia was on her way. Upon arrival at Emergency Kezia was whisked through to an isolation room where the doctors first wanted an x-ray of her foot prior to administering any antibiotics (as the blood poisoning was still tracking up her leg). At 10pm antibiotics were administered and Kezia was sent to spend time in the oncology ward in isolation. During the next day the ward oncologist advised that Kezia should have a tetanus immunoglobulin injection due to her cut foot – Rebecca requested the on-hand medical information about the tetanus injection and it stated that “this should be given immediately upon entering the hospital for immune-suppressed patients.” The injection was given that night at 10pm (38 hours after first presenting to the oncology ward with the cut).
After the first dose of chemotherapy when Kezia had gone home, a phone call was made from a ward nurse to Adrian and Rebecca on a Monday night at 5pm advising that the next three days consisted of tests, scans and other procedures. This being made without warning or knowledge greatly concerned Rebecca and Adrian as unprofessional and discourteous. This was brought to the attention of the oncologist the next day in the corridor at the clinic where The oncologist stated that ‘I don’t care, your life has to change now’. After this incident they requested a detailed list of the upcoming treatment sessions and tests. As previously mentioned in the beginning of this case, in August a request was made for information and a meeting to be scheduled with the ward director who at that time agreed to the meeting for the Friday of the week, this was postponed, again and again. Little information was provided and they were forced to request documents through the official information act as ‘hospital staff were too busy’.
As the months wore on, Adrian and Rebecca found time to research on their own for firstly the facts about Neuroblastoma and how to beat cancer from anecdotal and medical sources. Pouring through hundreds of web pages, research articles and books Rebecca and Adrian grew uncomfortable about the next phase of chemotherapy and the prognosis long term. This was when the paper war started. During August a hand written letter requesting an immediate meeting with the ward director to discuss the facts was requested, in the same letter were requests for information about Neuroblastoma, other options, and requests for Kezia’s file and patient information. Barely a morsel of information was provided, instead they were sent through the official information request channel to apply for the information. About a month later only basic scans and reports were provided – no file of ward doctor’s notes or any other relevant information arrived. During their research they find out that in New Zealand children have right of care by the state and a number of cancer related cases have been taken to court and children have been taken from parents to force treatment upon them.
After posting the children at their nanas house Rebecca and Adrian aimed to be at the meeting early – yet were left to wait for almost an hour. The meeting commenced and the tape recorder was placed on the table. The meeting focused upon the path forward, rather than the significant list of issues and complaints made by Adrian and Rebecca in the preceding months. The oncologists briefly discussed the diagnosis and cycles up to the end of the induction phase. The results thus far were promising, 94% of the tumor had reduced in size, the oncologist commented that this was ‘a very good clinical response’, surgery was cancelled as the reduction was so much more than they anticipated. Adrian and Rebecca asked about what the consolidation phase would include, this was answered by the oncologist regarding the possible two bone marrow transplants and that one in twenty children do not survive this treatment.
The radiologist discussed the radiation process, safety and risks, and the long term issues associated with the treatments including the platinum toxicity and the radiation causing cancer. The adverse effects were discussed in great detail amongst the group with many questions about the details. At the conclusion of the consolidation and maintenance discussion, the ward director, with a tear in his eye, said that even as Kezia had such a good response to the treatment there was less that 10% chance of her survival if ‘nothing’ was done, and that even after the consolidation and maintenance phases, with significant permanent harm to Kezias body, there was less than 30% likelihood of her survival. The director then discussed our option to follow the path of palliative care, and that they would not take any legal action if we chose this path. The oncologist requested that Adrian and Rebecca make a decision on the spot to go forward with treatment. Adrian and Rebecca left the meeting being fully informed, for the first time in months, upset at the problems and communication battle – but now knowing the truth about the options to move forward.
- Palliative care – basic care when required for assistance with pain, transfusions and treatment where required.
- ‘Best practice’ – one cycle of high dose chemo including bone marrow transplant, would consist of 6 weeks in hospital and one in twenty chance of death, permanent damage to her body and possible permanent hearing loss.
- ‘Clinical trial’ – possibly one or two cycle of high dose chemo including bone marrow transplant, would consist of 6 to 12 weeks in hospital and one in twenty chance of death, permanent damage to her body and possible permanent hearing loss.
- Other – According to the hospital staff there were no other options.
Adrian and Rebecca had already created a key strategic plan prior to the meeting, the key issues of legal action was the only item stopping them cancelling the treatment. Adrian and Rebecca initially telephoned and advised the ward nurse to report that they would allow Kezia to continue with treatment on the condition that alternative treatments, including High Dose IV Vitamin C must used to compliment the treatment. This was met with the standard line ‘ it may adversely affect the treatment’. After spending weeks pouring over possible treatment options, contacting clinics around the world and creating a key strategic plan for dealing with the issues they knew that telling the hospital staff they had found a ‘better’ treatment would not wash. They then sat down together and discussed everything included in the strategic plan. Neither wanted to harm Kezia any further – in any way, both wanted to do anything possible to save her, and agreed to try anything that may help but would not harm.
A telephone call was made to the ward director and he was advised that the consolidation phase would be too harmful to go through without any definite benefits for Kezia. Adrian requested that the director assist Kezia by administering High dose IV Vitamin C at Starship – this was refused as there was ‘no evidence Vitamin C was any good… and that it may harm her’. A meeting was then held with the director and oncologist to advise them of the decision in person and discuss alternative plans. The director was happy with the decision and advised that Kezia would be passed to the palliative care team to follow up. The oncologist was very upset that Kezia was not going to continue any treatment, and still insisted that chemotherapy was the ‘only possible way to save Kezia’. Adrian and Rebecca advised the director that they had taken Kezia to a paediatrician who had instantly picked up on a number of clear vitamin and mineral deficiencies that were confirmed by testing that needed to be remedied to help Kezia – this commenced the creation of a privately created protocol that would feed and provide nutrition, as well as fight the tumour.
Thus far, the treatment protocol created by Adrian and Rebecca is in full effect, including High Dose IV Vitamin C at a private clinic. The tumour markers are showing the activity is performing in the opposite manner to the oncologist’s prediction, and Kezia is heading for a complete remission. Kezia and her family have just welcomed their new baby boy. Kezia is a happy five year old girl, her hair is growing back, and she is playing with her friends again and has started home school.