It's impossible to describe the range of feelings Geoff
and I have been going through these past few weeks, but the one thing we *have*
felt is the overwhelming support of family, friends and even strangers. Your thoughts,
prayers and generosity have touched us deeply. Thank you.
I've been wanting to write this for some time to pass on our story so far. I'm sure there's a few versions doing the rounds (particularly in Port Vila!) and I wanted to make sure everyone knows the same thing.
Over the next week, Kessia was a bit weak and tired. She stumbled around a little, but was still active and going to school and gym, and playing quite normally. We assumed she was recovering from her illness.
About that time, Kessia complained about blurred vision, so we took her to our GP. By then, she was quite stumbly and was coughing when she drank, and generally more tired. After examining her, the doctor told us she was probably still recovering from the virus.
Not quite satisfied, I took Kessia to our optometrist a few days later. He said her vision was perfect, and that he suspected her eye muscles may have been weakened by the virus and should return to normal soon.
Still not satisfied, I rang our GP and asked for a referral to a paediatrician. In the ten days it took for us to get an appointment, Kessia became increasingly tired and her speech very nasal. She fell over whenever she stood up and seemed to trip on things that weren't there. Geoff and I weren't sure if she was just joking around, but still, we weren't too worried as everyone kept telling us she was just recovering.
That week Geoff and I were reeling from the possibility that Kessia could have brain damage. He had mentioned the term "palsy" which Geoff and I later researched on the internet. From our reading, we were sure Kessia had some type of "acquired cerebral palsy". Everything matched, apart from one major fact: that cerebral palsy does not get worse over time.
On Mon 16 Sept, we became increasingly worried about Kessia's condition. She was now complaining of double vision and her eyes looked slightly crossed. Dr Jenkins contacted us that same day. By chance, a visiting paediatric neurologist (Dr Paddy Grattan-Smith) from Sydney was in Canberra the next day and happened to have a cancellation, so we were told to be at the hospital at 2pm.
That night, Geoff and I were completely overwhelmed and distraught. There was lots of crying as we thought about the likelihood that Kessia had brain damage, but the thought of a tumour had also begun to creep in, if only briefly. Geoff later told me he seriously thought she might have died that night. We paged Dr Jenkins at the hospital and discussed our options. Kessia was sleeping peacefully by then, so we decided to let her sleep and Dr Jenkins arranged for us to be admitted to the hospital the next day.
The next morning, Wed 18 Sept, Kessia was scheduled for her MRI at 10.30am. She was under general anaesthetic and we were told they would conduct a very detailed investigation that could take 45mins to an hour (generally it took about 20mins). Kessia ended up being 1 1/2 hours. We were also told not to expect results straight away, and that it could take several days for them to interpret the images and make a diagnoses.
As it turned out, about an hour and a half after Kessia came out of recovery, Geoff and I were sat down in a room with two doctors and a social worker. We were told it was bad news but nothing could have prepared us for what they had found. The MRI showed that Kessia has a massive brain tumour called a brainstem glioma. From that point on, things moved extremely fast.
Thursday 19 Sept was spent telling our story to countless teams of neurosurgeons, oncologists, radiologists, neurologists and speech therapists. That afternoon, Geoff, Michael and I met with a dozen of some of Australia's best cancer specialists. And basically, it took about an hour for them to explain why there was nothing they could do for Kessia.
Kessia's type of brain tumour, a high grade brainstem glioma, is
exceptionally aggressive. It's
location at the base of the brain where it joins the spinal cord,
essentially means that cancerous tissue is intermingled with every
essential nervous pathway. The size and swelling around the tumour is
causing pressure on these nerves, affecting her ability to see, walk, talk
and swallow, as well as causing general weakness in her limbs and causing
part paralysis of her face.
Surgery wasn't an option because of it's location --- it was too dangerous to try and separate tumour from normal brain tissue. Chemotherapy has been shown to be ineffective on this type of tumour. Radiation therapy also had been shown to have little effect, because it could never effectively remove 100% of the cancerous cells and the tumour would eventually grow back. As it was, the type of high grade tumour Kessia has made the specialists think radiation, in Kessia's case, would have no effect. At most, if her tumour did respond to treatment, it would give her a few extra months. As it was, they thought perhaps that Kessia has a few months remaining. The topic of conversation turned towards "quality of life" and Geoff and I felt our world collapsing.
In the end, Geoff and I decided that even if Kessia had a one in a billion chance of radiation being effective, it was still a chance. Normally, radiation therapy is conducted over a 6-8 week course. They were willing to give Kessia a few days to one week of high dosage radiation, and if no change was evident in that time, long term radiation would not be effective.
Phase I was a detailed analysis stage where they plan the radiation treatment. To do this, Kessia had to lie on a table under big machines while they made a mask of her face. So, understandably, she freaked out and refused to do it. At the same time, one of the doctors thought to tell us the steroids she was on could adversely be affecting her behaviour. In the end, it was an impossible situation, and as a result, the Friday and Saturday treatments, which they pulled strings to arrange for us, were missed.
Our plan of attack changed to sedating Kessia for each of her treatments. So, on Monday 23 Sept (my birthday), Kessia went under general anaesthetic and had her first radiation treatment.
That day, Kessia became extremely weak. There came a point in the afternoon where I thought she was about to die. The next day, the anaestheologist told us sedation wasn't an option, that the risk of her breathing stopping was too high. We tried to convince her to lie still on the table, but when the mask was produced, she fought against it, and in the end we respected her decision that it was too hard for her.
More discussions with her medical team followed. By that point, Kessia had become sad and depressed. She had given up responding to people and ignored everything around her. "Quality of life" became the dominant issue for discussion.
In the end, we gave Kessia a choice of stopping treatment and returning to Canberra. Her spirits picked up and we felt we had made the right decision. We told her the doctors thought we were such a fantastic family and that she had such responsible parents that they felt we could take care of her properly at home and help her get better with our "love medicine" and that some lucky kids can get better without treatment.
After explaining that to her, Geoff and I were asked to complete the last of our paperwork in Sydney: Kessia's "end of life" plan, which details the level of intervention we wish in the event of a life-threatening episode. It seemed like every day was full of surreal moments such as these.
For those of you who hadn't known, we had only recently moved into a rental property about a fortnight before Kessia was diagnosed with the brain tumour. An amazing array of family and friends came through and got the house livable for us, clearing away boxes and making the house welcoming. Our thanks, again, are endless.
Our time at Canberra Hospital was spent organising equipment for home, such as an electric bed and wheelchair, and acquainting ourselves with palliative care services --- a task which still leaves us feeling sick to our very core.
Our first week back was hectic and stressful. After an intense ten days of being surrounded 24hrs a day by a dedicated and caring team of nurses, doctors and specialists, suddenly we were alone and it was scary. Community nurses from palliative care dropped in to visit us each day, but Geoff and I aren't ready to relinquish any of our responsibility. We aren't there yet. Palliative care is for people who are dying. It still doesn't make any sense. We have asked them to stay away until we need to call upon them.
This is now our second week back home. Kessia is going great. Yesterday she didn't use her wheelchair once, and we went swimming! She is walking around, talking, joking, constantly laughing, drawing and being a joy. She is so eager to return to school, and is planning her birthday party menu for next year, as well as revising her Christmas list with a few updated requests. Her personality and mind are, as we continue to thank God, intact and she is in no pain.
The main effects she is suffering continue to be blurred vision, general weakness in her body, an inability to swallow liquids without them ending up in her lungs, and tiredness. Her eyes are still crossed and she is self conscious of this. One medication she is on, dexamethasone, a steroid, makes her ravenous around the clock. She eats constantly, including once or twice during the night. Her face and stomach are beginning to swell.
To date, we have been given four possible scenarios of the most likely course of events:
Tomorrow it will be three weeks since we found out that Kessia has a brain tumour. Please, continue to pray for her. Pray for a miracle.
Love,
Denise and Geoff
[So many people have put their lives on hold for us and our families in
particular are a wonderful blessing. But I'd like to take a moment to acknowledge
Geoff's and my heartfelt appreciation for Michael. As Geoff describes, Michael
is almost psychic in knowing our needs. He made himself responsible for taking
notes during our onslaught of meetings, recorded names and contact numbers from
the endless line of people we met with, asked intelligent questions when Geoff
and I couldn't think, organised accommodation, brought us coffee at all the
right times, and continually gave of himself around the clock. He has been our
strength when we've had none of our own. We couldn't have made it to this point
so well without him.]
| Updated 8th October 2002 | Site hosted at immir.com. |