"Today I'm happy to admit you still can have so much fun even if you're in a wheelchair" - the morning's text from Elise to Stuart. You can imagine how we felt.
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| "walking" practice |
Elise is going to be in a wheelchair for a long time, yes, it is time to use the word paraplegic. Recently I met with the doctors "in the know" for the all important meeting of assessing her MRI and clinical outlook. Not a meeting I was really looking forward to, but better to know than not to know (in an official sense).
Elises's recent MRI is fantastic, showing far better recovery than expected - little spinal swelling, almost no scarring and only slight shrinkage...virtually indistinguishable from a normal spinal cord. The medical team have done a wonderful job in arresting her Lupus.
Unfortunately, MRI's can be misleading. They do not show the fine damage to the axon cords running down from the head to the body. Unfortunately, MRI's often do not match the clinical outcome.
Transverse Myelitis is rare. Lupus transverse myelitis is rarer still. Paediatric Lupus transverse myelitis is rarer than rare. Elise's Paediatric Longtitudinal Lupus Transverse Myelitis of the most severe form, well, let's find a case.
Royal Children's...never, Monash...never. Toronto, maybe. It is hard to predict the outcome when there are so few cases. It is not easy for doctor's to decide the next step.
In two weeks, Elise will have her last chemo. In another two weeks she will start a modern drug some of you may be familiar with...Mycophenolate Mofetil or MMF...I like to call it CellCept the brand name ... (actually it is a new drug created from the first antibiotic ever discovered from a fungus on spoiled corn - trivia we all need to know).
It is used for organ transplants - antibacterial, anti fungal, antiviral, anti tumour, antisporiasis, and immunosuppressive - in short, a wonder drug typically nature derived. So how will it help Elise? The chemo was used to stop her immune system attacking her body, obviously not safe for long term use. The MMF, is a less toxic drug which also suppresses the immune system.
I hope it works. Everyone, hopes it will work.
On the positive side, Danusha the head resident, came in this week beaming. She was very excited to deliver the news, Elise's double-stranded DNA auto-antibodies were on the reportable scale for the first time....157, down from 3000 originally on admission (normal range is 0-29). These nasty critters are the things attacking Elise's DNA, killing her cell proteins. Well, what does this mean? The chemo is working and she only needs one more dose. A relief for all.
Back to the big meeting - yes, Elise's rigidity and spasticity of her legs indicate significant permanent axon damage. This is unlikely to improve. There is some plasticity in the spinal cord so there will probably be improvements over the next two years or so.
We are getting used to the term paraplegic.
We are very thankful we still have our lovely, full of life girl.
We are very blessed to be surrounded by so much love from all.
We are truly held up in our Father's hands.
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