This blog post is quite late, yes, but chemo, hospital life, nasty side effects, and end-of-school formalities have had our family life quite disjointed and chaotic over the last few of weeks. The good news, though, is that the result of that bone marrow test was clear, which means that the high-risk chemotherapy is succeeding in Ned’s body, and, at this stage, we don’t have to upgrade it to a trip to Melbourne for a bone marrow transplant, and long-term more intensive treatment - praise the Lord! That was a daunting scenario that Seth and I had discussed many times, and had never been able to generate any plans as to how we’d manage it - ie. who would go with Ned (given that the baby’s due in February), would Lucy come initially, how would Lucy and Seth re-start the new school year here at the end of January, etc etc. Thank God we no longer have to ponder this challenge for the time being.

But back to reality… Given that we’re now staying in Hobart, we’ve had to start Ned on the 2 months of fortnightly week-long hospital admissions for high-dose methotrexate (a chemo drug), and various other chemo agents. He’s just completed his 2nd week of it, but unfortunately this drug gives him nasty side effects. After discharge from the first week's treatment, I noticed he was refusing to eat, and his lips were occasionally bleeding. I looked closer, and noticed that the inside of his lips and all the skin inside his mouth was blistering, peeling off and bleeding… a nasty case of “mucositis”. It was dreadful, and he was in so much pain, he couldn’t eat, and could barely drink and swallow. Paracetamol didn’t help, and the mouth ulcer topical ointments and mouth washes stung the raw areas so much that they did more harm than good. We managed over the weekend, but Ned’s oncologist on Monday nearly admitted him for IV morphine, fluids and nasogastric feeding. Fortunately, Ned’s resilience, ability to continue sipping water, and our prescription of some stronger painkillers for home enabled us to keep him out of hospital for the subsequent few days while he healed. Unfortunately, this is likely to happen again after every admission for this methotrexate (which will be every second week till the beginning of February). Now that we’re aware of this potential though, we’ve put some things in place to prevent it becoming as serious and as painful for him - such as an extra day in hospital before discharge for infusion of a reversal medication.

Other than that, our days out of hospital were relatively pleasant and joyful - celebrating Lucy and Seth finishing up the school year, with award assemblies, concerts and other outings. We didn’t take Ned to many of them, but his good neutrophil count enabled him to get to a few - which he hugely enjoyed. His cheerful nature, despite the ordeal he’s enduring, is a lesson to each family member, and we’re abundantly grateful that his precious older sister is so loving and generous towards him.

- Emily

"The City of Ned" - Seth

To help my own visualisation and understanding of Ned’s cancer journey I thought up an analogy. It helped Lucy understand a little, although I may have also confused her more. If you’re an imaginative, creative sort like me, maybe this will help you too.

I imagine Ned as a city. A joyous, happy city, even while rebel factions began to take over and weaken the city from the inside. When other more powerful cities learned of this terrible almost-total takeover, drastic measures were taken, extra forces deployed. But the drastic measures took their toll on this beautiful city, and while in part the citizens recovered, there were side effects.

Agents assisting the recovery efforts in the City of Ned conducted searches and found rogue elements of rebels hidden in secret places around the city. So the battle continued, now with greater ferocity and with collateral damage for all the citizens. There were fears of greater military action - fears that if they didn’t stop the rebels they’d need to burn the very streets to drive them out. But then a messenger came - it was good news, the rebel forces had retreated out of the city, for the moment.

But the battle is not over.

As so many have asked after the good news of Ned’s bone marrow test: “is he cured now?”. Sadly, while yes we’ve no need for a drastic bone marrow transplant, we do have to continue with the high-risk treatment.

We’ve driven them out, but the City of Ned now needs to fortify, secure the walls, train its eligible citizens, vaccinate the young, reinforce the windows and doors, turn their plough-sheers into swords and make the city a stronghold to hold back the enemy. And this is a task that will take over three years. Three years before we can say it is done.

Edward Isham