| 10 June 2002 | Our family returns to Canberra and moves in with Michael Smith. |
| 14 August | Kessia becomes sick; a viral illness which we later find is just coincidental. |
| 15-17 August | Kessia is admitted to Canberra Hospital with suspected meningitis; all results are returned negative. |
| 27 August | We move into our new house. |
| 28 August: | We take Kessia to a GP because she is not getting better; she is lethargic, complains of tiredness, blurred vision and coughs when she drinks. The doctor tells us she is still recovering from her illness. |
| 30 August | I am not convinced that Kessia is just recovering. I call our GP and ask for a referral to a paediatrician. There is a ten day wait before the next appointment. |
| 2 September | Kessia is complaining of blurred vision still so we take her to our optometrist; her vision is perfect and he suspects her eye muscles are weak and recovering from the virus. |
| 11 September | We have a lengthy appointment with Dr Paul Jenkins, who schedules Kessia for an MRI. We suspect Kessia has some brain damage caused during her viral infection. We are distraught. |
17 September, |
We become increasingly concerned about Kessia's condition and Dr Jenkins arranges for Kessia to be admitted to The Canberra Hospital where she sees a speech pathologist and Dr Paddy Grattan-Smith, a visiting paediatric neurologist from Sydney. |
18 September, |
Kessia has her MRI at 10.30am. By 2pm the doctors tell us the news: Kessia has an aggressively large brain tumour. An air ambulance is arranged and Kessia and Geoff fly to Sydney, while Denise and Michael drive up at midnight. Kessia is put on dexamethasone, a powerful steroid which aims to reduce swelling around the tumour. It also makes her ravenously hungry, and affects her behaviour. |
| 19 September, Thursday |
Geoff, Michael and I meet with teams of neurosurgeons, paediatric neurologists, oncologists, radiologists, etc throughout the day. Kessia's diagnosis of a brainstem glioma is confirmed. Later that afternoon we meet with about a dozen medical staff who tell us there is nothing that will help Kessia and she has perhaps 1-2 months to live. Our world collapses. |
| 20 September, Friday |
We decide we want to try radiation therapy. We are told at lunchtime that Kessia will have her first round that afternoon, and again on Saturday. They have moved mountains to accommodate us. However, we have no time to prepare Kessia and it is all too much; she is too scared. The session is abandoned and will have to wait until Monday. |
| 21 September, Saturday |
Joshua arrives in Sydney. We have just about all the family around us. Kessia is put on a new drug called glycopyrolate, which dries up secretions. For some reason, Kessia has a lot of secretions and dealing with them is a big problem since she cannot swallow liquids. |
| 22 September, Sunday |
The hospital gives Kessia a "day pass" and we take her, Joshua and their cousin Chelsey to Darling Harbour for the day. Back at the hospital, we meet with an anaetheologist to discuss options for Kessia's treatment the next day. We decide to use general anaesthetic to make it as easy for Kessia as possible. |
| 23 September, Monday |
Denise's birthday. Kessia is "nil by mouth" since 3am and is hungry and thirsty. She cannot talk. She undergoes radiation therapy but after, her condition is very bad. We have a big party for me which Kessia comes to for a little while. Later, I fear she is close to dying. That night, her condition worsens and we call the hospital chaplain. She is closely monitored throughout the night but pulls through. |
| 24 September, Tuesday |
Kessia is too weak for general anaesthetic. We try radiation but Kessia is unable to lie still and chooses to stop treatment. We decide to return to Canberra. |
| 25 September, Wednesday |
That evening we discuss a delicate subject with Dr Paddy ---Kessia's "End of Life" plan. We decide to go the DNR route, Do Not Resusitate. We do not wish to prolong Kessia's illness if her quality of life is deteriorating so rapidly. |
| 26 September, Thursday |
Arrangements are made for us to fly back to Canberra on private air ambulance. It is an exhausting journey. We stay at Canberra Hospital for two nights while we sort out equipment for our home, and meet with palliative care for the first time. |
| 28 September, Saturday |
We go home via Michael's house where we have a birthday party for my brother Andrew. A palliative care nurse visits that night and Kessia shouts at her to go away for 100 years. |
| 1-5 October | My brother Ed visits from Montreal, Canada to see Kessia. Kessia's condition during this week and the next improves substantially. We hope for a miracle as she abandons the wheelchair and walks, talks, draws and laughs. |
| 4 October | Denise meets with Dr Mary Langtry for the first time. I tell her Kessia's story and ask whether she is able to take our family on. |
| 15-18 October | Rhonda, Glenn and Kate Gibson visit from Port Vila to see the family. |
| 19 October, Saturday |
We start the day with a High 5 concert, followed by Fiona and Mirko's wedding. Kessia has been looking forward to this day so much. We don't think she is up to the reception, but she is determined to party and we stay until 9pm. Following the wedding, Kessia's condition begins to decline rapidly. Almost daily there is a change for the worse. She looses the ability to walk and talk. She cannot stand unassisted. Her left arm becomes paralysed, followed by her left leg. She is sleeping longer, and is still constantly hungry. |
| 28 October, Monday |
Kessia is determined to go to the Gold Coast for her Starlight wish to pat the dolphins. Geoff and I are most reluctant to go as Kessia's condition is precariously weak. We delay the plane as oxygen is installed for us as a last minute request. We arrive in the evening at Seaworld Nara. The trip is exhausting and we are eternally thankful that we have Kate and Michael with us. |
| 29 October, Tuesday |
Michael and Kate take Josh to Dreamworld, while Geoff and I spend time with Kessia in the hotel room, playing games, reading stories to her and enjoying the view. We are pleased Kessia persevered and that we have time to focus completely on her. But today, Kessia loses the ability to swallow. Because of this, the secretions become worse and she asks to go to hospital to try suctioning. We wait for several hours and almost return to the hotel, but in the end they admit us. Around 2am, a nasal-gastric tube is inserted and Kessia is "fed" milk during the night, as well as being able to administer her medications. She asks for suctioning a few times. |
| 30 October, Wednesday |
The hospital staff are exceedingly helpful in getting us to Seaworld so Kessia can have her wish. We roll around a large suitcase to transport an oxygen tank and portable suctioning kit. It proves invaluable. Around 1pm we spend 15 mins in the water with a dolphin named Tourama. Kessia is thrilled. Shortly after this, Kessia almost suffocates to death, unable to breath, blocked by secretions. Our suctioning isn't working and we call for an ambulance. By the time they arrive, Geoff has managed to save Kessia. We are taken back to the hospital. I spend the night awake, propped up in bed with Kessia lying against me, between my legs. She sleeps the most soundly that she has for a long time. |
| 31 October, Thursday |
We change our flights and fly home a day earlier. We are relieved to have a wonderful nurse, Jodi Wilson, accompany us for the journey, and have oxygen and suctioning close at hand. We are exhausted and on edge, praying Kessia lasts the trip home. We are met at Canberra airport by ambulance and transported home. I burst into tears that we have all made it safely. |
| 1 November, Friday |
It is a grueling day. Kessia continually asks for suctioning. It is constant and exhausting. We feel we are close to loosing her. We begin using morphine to help settle Kessia's breathing and overall comfort. That night, a nurse spends the night and Geoff and I get some much needed rest. |
| 2 November, Saturday |
The day is more peaceful. We debate over how much morphine to use and decide to ease off during the day. The nurse is not available that night but we end up having Linda McConnell and Kate Wells care for Kessia in the night and following morning. |
| 3 November, Sunday |
I wake and think "I hope Kessia dies today". We have a relaxed morning, sleeping in, massaging Kessia, and reading to her. But around 3pm, there is a sudden need for suctioning. Kessia's condition spirals rapidly downhill. We call for our doctor, Mary Langtry. Family and friends start to gather at home. Kessia dies peacefully at 4.24pm, with just Geoff and I in the room holding her in bed together. |
| 4 - 8 November | We keep Kessia in the house with us. She lies on her bed in her fairy pyjamas and is visited by family and close friends. Josh is able to see what "dead" means, and we are able to have many conversations about death and heaven and Kessia. We are still able to kiss her and stroke her and say goodbye. |
| 8 November, Friday |
Kessia's funeral service and burial. Her burial is more final than her passing. We end the day at Michael's house, eating Kessia's favourite chocolate tarts. It is only seven weeks since Kessia's diagnosis. |
| Since then... | We are waiting. We wait for her to return from the little holiday she's been on, expecting her to come bouncing in the door any minute, all beautiful and sweet. That feeling of waiting may pass one day, but I never wish it to be fully gone. I will always have one part of my soul devoted to waiting and longing to see Kessia again. |