Fri 28 April 2017 Medical update

Medical update

"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.

"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.

Thu 27 Apr 2017 A special outing

Hospital School Karina helping Elise with maths

After re-jigging our weekly timetable, Stuart enjoyed staying with Elise today. Well, Thursday was just another day, virtually a waiting line of people outside of Elise's door for scheduled and unscheduled appointments. Maybe, it was a bit busier than usual, especially as we had a special afternoon outing. This morning was busy... OT cancelled as sick, physio, teacher, clinical psychologist, 2 x specialist doctor meeting, lunch, another physio session ...phew...Elise had a break and rest, then off to afternoon event - horse riding.

Horse riding! Now who heard of an inpatient going horse riding! Tanya, a lovely physio organised a para equestrian horse riding training session. We had no idea what to expect...how will they get her on the horse? Will she just fall off? What about nerve pain? Etc etc...so we prepared her, well, Stuart did anyway..."if you just get on the horse that will be an achievement...don't expect to be riding around." That was after Elise asked me if they would let her do jumps!

It was great. I have never experienced a real professional horse trainer going through their paces. She was good, very good. Elise loved it. The Physio's loved it...trunk control...head up, look forward, tuck in your tummy, shoulders back, lean forward, relax your knees (she can't) and so on for half an hour. Tomorrow will be a day of rest and gentle (read sore) movements. The Physio's have decided it needs to be a regular event, they were tickled pink. You can imagine the physical, mental and emotional benefits...something she can do and is only good for her! There are very few activities for paraplegics that help significantly with balance, trunk control etc. It costs $85/30min fee, apparently NDIS will probably, hopefully, pay for it.

In case you are wondering...they use Velcro and rubber bands to hold her legs and feet down - very high tech.

Incidentally, she also got to meet a disorderly looking bunch of elite horse riders...gold at Athens para-olympics, the rest I've forgotten. Stu typically organised a group shot, I'm usually lost in the moment to think of practical things such as pictures.

elite horse riders

Click below for lots of videos
https://goo.gl/photos/fnW1x8QuQViupFTeA

Click on the Right for a whizzo movie of Elise's big moment.

Tue 19 Apr 2017 New Hospital first night

So new some rooms are unoccupied

Tonight is Elise's first night in the new children's hospital. She has been allocated a room - Level 3, Forest, bed 6.

Below is a video of Elise in her new room.

https://goo.gl/photos/NBBbuEbyf3eepD4BA

The new hospital will be great, however, I am glad that Elise spent most of her to be, approx 6 month stay in the old hospital. Teething problems - Stuart broke the blind on first try then managed to fix it - a artistic design but doomed to failure. The toilet roll holder in some of the bathrooms is placed so far away from the toilet that you have to do a Houdini to access it - a big occupational therapist oops! The nurses were apparently wandering confused due to things not working.

All these problems are really minor and are just part of opening a new hospital. No doubt everything will be smooth sailing in a few months and the environment is so light and cheery.

Mon 17th Apr 2017 Easter Monday - Last sleep at Monash Medical Centre

A note for Elise from a loving nurse

Today Stuart took Elise back to hospital after dinner - for her last sleep at the Monash Medical Centre. The new Monash Children's hospital is 100m away.

The nurses and doctor's have abundantly (but nicely) hinted they would prefer Elise not to be there on Tuesday night - too much chaos with porter's etc moving everything to look after patients. So the plan is to come home for Tuesday night then return in the morning to the new hospital.

Elise is very excited, different walls to look at for her last weeks of rehab. Hopefully, she will be home permanently in early June.

Today we visited Braeside park, beautiful native bushland. For those who haven't been there - it's like being away in the bush, with no building in site and the only reminder of city life is the planes that sometimes fly over from Moorabbin airport. Very wheelchair friendly, so that was helpful. A lovely picnic with Grandma Shirley and walk through the bushland.

Below is a video link of Elise talking about her impending move (wearing her new merino wool t-shirt made by Abi Burgess).
https://goo.gl/photos/pjGFcjc96LuAgNwV7

Sat- Sun 15-16 April Easter holidays

We were very brave and decided to venture down the coast to our much loved beach house...for Elise, it was 2 nights away from hospital. As a family, it was emotionally challenging - just the logistics of getting everything ready and trying to manage when Elise had no access to the inside shower or toilet.

With no computerised pressure care mattress (beeping, gassing and burping as Poppy puts it :-), I was left to get up every two hours in the night to do turning over duty...something I didn't relish. But then, I did have a good excuse for sleeping in the next morning.

All said and done, it was a great success and huge relief to Stuart and myself that Elise enjoyed the experience. Elise was anxious and worried about being there (due to everything not being suited to a wheelchair and she now can't do her favorite activities - hiking, body boarding and dune surfing).

Instead we toasted marshmallows on the fire, walked along bayside tracks, read, cooked and relaxed in the sun.

Post burning off, extremely hot coals

Our first trial of piggy backing Elise worked perfectly up the hill to burning off site. There we could toast marshmallows to our heart's content.
https://goo.gl/photos/P8GYsTiWDLYMb7QN9
See link to family toasting silliness

Toasting marshmallows with a super long toaster stick

Sat 15 Apr 2017 Med's ahoy!

Elise is trying to break the world record - actually, the morning medication list is getting ridiculous...the poor nurses disappear for quite a long time to organise them and it takes much longer for us at home to wade through the list.

All in a row

About half of them are primary med's eg. prednisolone (steroids) and the rest are to reduce the side effects 😱

https://goo.gl/photos/nbfq6HzHmxJax6GDA
Link for tablet video

Tue 11 Apr 2017 Feeling well

Elise has had a busy day as she was up to doing the usual rehab routine.


Video link
https://goo.gl/photos/x5UjxLKP9XmuvuYZA

Mon 10 Apr 2017 Chemo update 10:00pm

I have just returned home from the hospital and Elsie is in fine spirits and feels well. The Cyclo dose and Methylprednisolone are now over and she hasn't had the same negative reactions as previous times.
We hope that tomorrow will be without difficulties for her too.

Mon 10 Apr 2017 Chemo day again. 5th time

The doctors have kindly adjusted the time of this chemo session to allow Elise to have some days away from the hospital over the Easter break.
Same dose as last time which is the maximum that she can tolerate for her age/weight etc.
1000mg of Cyclophosphamide and then 250mg methylprednisolone.

Dhanusya is a kind doctor that has with been Elise since her first day in hospital.

Fri 07 Apr 2017 Funding confusion

About a week ago, my sister lovingly surprised me by setting up a GoFundMe page for Elise. Her rationale being that, although we are fine financially, Elise will have many ongoing financial costs (some will be government funded) and some family and friends would like to help out - more of a showing of love and support rather than urgent need. It was a very loving thing to do.

We have been inundated with kind offers of help over the last few months - offering cleaning, gardening, child-sitting and finances. Yes, some things have fallen by the way side (our garden is, umm...well, needing an overhaul) but nothing of significant importance. It has been so helpful emotionally just knowing support is generously available if we need it - and we may need it when Elise comes home initially. Most importantly everyone has been praying for us...we treasure this and really feel supported, loved and held by our Family and our fellow family in Christ.

Yesterday, we found out that my sister's GoFundMe page was linked to Facebook (I am a complete ignoramus when it comes to Facebook) and has typically been kindly shared out. We are aware this may create confusion, some people don't know our situation and may be lead to thinking we are in desperate financial straights (although the Funding page doesn't indicate this in any way). So, if you hear of concern mentioned, please take the opportunity to clarify the situation.

On the topic of funding, yes, it is going to be very expensive for a long time and we will have to re-organise our finances to manage. We are very blessed financially and are so thankful that our Heavenly Father has given us a really good financial basis. Hopefully NDIS, the coming new national disability funding government program will pay for her main costs - this is a process of negotiation and wait and see. For those who are interested, it appears that they have a system of helping but not fully paying. So, if I say Elise will need $10k/year for toileting consumables, they may offer $4k and we have to pay the rest. What a blessing we live in a welfare country and not someplace like America or even much worse, sub-Saharan Africa.

Hopefully this will give you all a clear idea of where we are at.

Sun 02 Apr 2017 Open day

Architects vision of the hospital

This afternoon we (Stuart, Elise, Poppy and myself - Jesse went to Glen Eden Kids Camp), travelled the great distance next door to the new Monash Children's Hospital....for the community open day. Actually, the hospital doesn't open till 19th April but we all needed a sneak preview.

Yes, it does look like the picture. So, today we strolled and rolled around the 4th floor...looked at beds, MRI's and the whizzo new Star Light room.

Elise is one of the few long-term paediatric patient's at Monash so she'll have the privilege of choosing her room and being the first to use it - well, it's something to look forward to.

Fun in the Foyer

A 3D simulation of looking down into the foyer

Sat 01 Apr 2017 Nausea and misery

Not a happy camper

Thursday was a big day....a tube down to the nose to the stomach, a drip and seemingly endless white liquid down the tube. Not a nice way to start a day.

The good folk at the hospital decided enough was enough, the toileting problems needed to be solved - one way or another. Unfortunately Elise was miserable, hungry (as she wasn't allowed to eat), nauseated, crampy etc etc. Today Elise said it was one of the worst days of her life! ...maybe an exaggeration but we got the point.

Friday was pretty bad but at least the tube finally came out and she was entertained by another x-ray. Elise's cousin Abby came for a sleepover which really helped with distraction.

Saturday...well...Saturday it got better as the day went. Started with nausea, cramping etc but finally the ordeal was over by the afternoon and Elise was able to eat fried rice with veg curry - yum! (oh, it wasn't hospital food ;-)

Just a minute ago Elise texted us from hosp (she was too sick to come home for Sat sleepover), the doctor had visited and well - the X-ray indicated it had mostly worked...mostly worked! Well, that is not enough.... so the next step is a old home remedy.... treacle and milk up the other way :-(