The day was muggy. Western Australia had seen so much rain in the last few days. The fact that N and G were able to make it to Perth and the appointment was in itself a bit of a feat. The rains had hit the Wheatbelt region of the South West hard. Roads were flooded and complete towns had been isolated, the bridge just outside of Ravensthorpe had been washed away, Lake Dumbleyung was slowly filling and front-end loaders were moving people in and out of Kukerin. Many farmers needed to rely on their (hopefully well- stocked) cupboards to feed them until the waters flowed away into the many lakes of the biggest lake shire in the southern hemisphere of Lake Grace.
Loaning a four-wheel drive to make the trip in an alternate route that took them at first vastly far away from Perth before they could turn around and come north. Earlier on this Monday was a double funeral the family was to attend. The service was full and as people stood outside the hall they could feel the sweat rolling down their skins. The heat of summer had not abated for the wet weather and as quickly as the rain stopped falling the water slowly began to evaporate off the heating grounds leaving the air dense and hard to breathe. At times it was hard to tell if the water on your skin was evaporation or perspiration.
Cold water was in abundance at the wake and reluctantly the family of three took their last big swigs of icy drinks and made their way to the bus. From one important meeting at the wake they were off to another important meeting at the hospital. The youngest of the three would be hearing the news of months of her tests, scans and waiting. News that would bring recognition of the benefits of the most recent bout of medicine treatments, or else the need for a stronger and (hopefully) more permanent remedy.
Parents N and G had not expected to attend this meeting but given the funeral it had coincided naturally quite well. And so it was the entourage of three met and entered the hospital clinic office, introducing themselves to the three new medical specialists and greeting the more familiar acquaintances of the other two. A company of doctors was not unusual or unexpected at these meetings of the neuroimmunology clinic, yet five was a new highest count. In such a small office the jostling for chairs is always an awkward joking affair that takes the first three or four minutes. The intern stood and G took the examination bed.
Connor led the meeting. He always leads. First was the recount of the date of the last scans and tests, as well as revisiting current medication doses. Next was a general discussion on symptoms, feelings, ‘has anything happened that we should know about?’. A slight frown at the news of a recent shark swimming adventure. That’s why he wasn’t asked beforehand (wink). Otherwise no medical cause for concern.
Finally Connor reviewed the latest scans. A new growth of two centimetres. Long and thin, obviously in a smaller vessel. Quite narrow, maybe five millimeters thick. Nonetheless it was there. In spite of the treatments she normally responds to. In spite of doubling the dose of the newest and most effective medication.
He says, “This is not so concerning. In terms of the overall Cerebritis we are now in the stage of management, you are doing well on the whole and it is clear the treatment is effective, regardless of this lesion. It is just a concern in terms of future prevention now. You are going well, we just don’t want it to get worse and I don’t think we will see that now. But your scans are indicative of modular nodule inflammation and your B-Cells are back again. The person who read your previous scans was the ‘God of neuropathology’ in Western Australia and so I will contact him to confirm but it may be that you need another round of Rituximab, just to clear it up.”
More discussion follows, explaining how and why. It involves the other medications. It explains in detail his reasons for saying this and elaborates on how he has come to this conclusion. He phrases the same information three times to make sure there is no confusion, and to give her time to think. He asks her then how she feels and what she thinks.
She explains how she felt last time on the treatment and how she understands the rationalisation. She communicates an appreciation of this decision and indicates her knowledge of how the treatment may now change and be more beneficial with the changes to the other medications. She says this is okay, as long as it means that she doesn’t have to increase the prednisolone again.
“Only slightly. It will still be within a natural dosage range.”
G asks, “Does this mean more chemo?”
“Yes, basically, although I will confirm this once I have spoken to this other neuropathologist. I will call you in a few days, once I have my application approved. Then we will also be able to tell you the date you will start. It will be two out patient days with a two week interlude between. It will be likely sometime in March. Please don’t drive.”
They thank Connor. He is clear, concise and as good as he can be in this circumstance.
He tells them this is a formal goodbye from him. The Mayo Clinic has sought him out and offered him a position with them for two years. This is the biggest honour and they are as proud as if it was a family member telling them this. He is a family member, he has been with them throughout this whole illness, from day one.
She tells him, “I’m going to assume it was partly due to my miraculous and mysterious ways that have helped you earn this honour.”
He says it certainly helped.
This is how her heart slightly broke the day before Valentine’s Day.