Day +4 (Friday)

Seems ironic. A few weeks ago, we were dreading fevers associated with the infection in Lauren's leg. Today we welcome fevers when they come!!

Last night she had some 4 fevers and another one or two today, so something's happening. Fast asleep now as she seems to be tired a bit lately....I wonder why?!

Interesting talking to one of the staff at Ronald McDonald House today and how they house many people from the country and interstate who wouldn't be able to support their kids through treatment(s) if it wasn't for the affordable housing provided by RMcD House. It drove this fact home for me as last time (2008) when we went to Sydney for Lauren's Bone Marrow transplant, I had a great employer (Aviva) with a very empathetic CEO who kept me on the payroll whilst away. It gave us the opportunity to rent an apartment near the hospital and live as normal a life as possible for the 3 or so months we were in Sydney, and PATS kicked in too (see below).

This time, with the employment situation totally different, I couldn't afford to stay here and be with Lauren if it wasn't for Ronald McDonald House accommodation. There is a subsidy from the SA State Government (PATS) when you're more than 100Kms from home for treatment, but they don't pay it for participation in a 'clinical trial'. I will be challenging this requirement, as a 'trial' as a choice over traditional treatment(s) readily available, I can understand, but we have no other options except this CAR T-Cell therapy and it is only available in Melbourne. So we have no choice (unless death is considered a choice by the SA Government) but to leave Adelaide for treatment. Ironically, if we were here for a bone marrow transplant it would be payable!! Go figure!! Rather than have a shot at bureaucracy, I'll assume they haven't considered that not all 'clinical trials' are simply choices over traditional treatment(s), - sometimes they are someone's ONLY option.