Tue 17 Jan 2017

Elise's lupus' chronic fatigue is impeding her rehab work. This was demonstrated today after a small amount of wheelchair training, she became pale and drained, going straight to bed.

Her second chemo (Cyclophosamide 500mg) treatment starts tomorrow and we are all scared of the unknown. Fearful of nausea and the misery that she has previously experienced.

I guess some of you are wondering...why chemo?
Well, it's the fastest was to get her Lupus under control, to stop continuing spinal inflammation and damage. Cyclo crosses the blood-brain barrier and quickly suppresses her immune system which is causing all her problems. This med. is usually used for breast cancer, leukemia, lymphoma, lung cancer and autoimmune conditions. It isn't a very nice drug, has potential nasty long-term side effects but it's very effective. As she is petite, this is a reasonably high dose.

We were reminded today of Elise's unique situation - the neurologist Michael Fahey re-iterated the extensive spinal damage (actually he said it's her whole spinal cord, when normally it is only a small section of inflammation). This is very unusual and would normally indicate an extremely poor outcome ie. full quadriplegia. Thankfully (we are blessed), there are different types of spinal damage and Elise's type seems so far to be more inflammation based...not the more scaring type. This is indicated by her early upper body recovery (arms, head and breathing which were partly paralysed). Her quick response to the anti-inflammatories indicate that the nerve channels are partly intact. So a wait and see game - as the remaining inflammation decreases over the next few months. The neurologist is optimistic which is wonderfully encouraging - if our Lord will's she may walk again.