Sun 29 Jan 2017

Today we took Elise on her first outing. It was to Chadstone shopping centre. Getting the mechanics done was a challenge for first timers, transferring from wheelchair to car, disassembling the wheelchair and fitting in the car, finding suitable car parks and ramps, etc. The good news is that all these things worked out well in the end and the trip was a huge success.

Two videos of Elise cruising around Chadstone.
https://goo.gl/photos/nm3C7tqKNmzHK9Kb8


A message from Elise.
https://goo.gl/photos/QWqyHQtqeDVnfJgD9

Medically Elise is on track. Today we were told that her inflammatory markers were really down (eg. ESR 12, it was 120+ on admission) and other important blood markers are looking good, so the chemo is doing it's job. Everything is heading in the right direction, including her newfound sensitivity on her tummy (she can feel me tickling her!)...an indication of some spinal healing around the T10 level - this includes remyelination, re-programming, rewiring and a reduction in inflammation. Obviously, sensation recovery goes from the top towards the toes as signals need to get to the brain. So hopefully, some hip recovery will be occur in the coming months. All in God's trustworthy hands.

Sat 28 Jan 2017

Testing out her new wheels

Today Elise gave me a demo of her new machine, a Tilite Zero wheelchair, not a perfect fit (a bit big, notice her feet swinging :-) but sooooo much better than the standard hospital one. I gave it a try and was surprised how vulnerable it made you feel to tipping over backwards, the centre of gravity being much closer to the body - the very thing needed to enable efficient self-propulsion. Wheelchair driving is a real art and it will take her quite a while to become proficient at it...hence, anti-tipping wheels on for a while. Well, we have this one for a week apparently, which isn't very long.

Her trunk core strength has improved significantly over the last few days. The immediate benefits are  that she is just beginning to be able to turn over in bed, essential for bedsore prevention, and general mobility including transfers from bed to wheelchair.

Fri 27 Jan 2017

Today Elise received a new super wheelchair. She's very happy as it's lightweight and very maneuverable. On her maiden voyage, she was able to travel more than 3 times the distance compared to her previous hired wheelchair. It is on loan for one week only and we understand that a more permanent arrangement must be made after that... so looking towards organising a custom made wheelchair.

Wed 25 Jan 2017

Today Elise made a trial transfer from her wheelchair to our car. This is a practice with view of having a little outing next week. The transfer went well as her upper body strength and technique are both improving. Elise is greatly looking forward to having a look at the big wide world for the first time in six weeks.

Mon 23 Jan 2017

Elise was fitted for AFO (Ankle Foot Orthosis) today. They cost the hospital $1400. In two weeks hopefully she'll receive her custom ankle brace - helpful for relearning to stand upright with assistance and keep her ankle tendons flexible.

She also had an x-ray of her tummy in the afternoon to check functionality.

Today they told her she needed to eat more as she is still losing weight! The rehab and normal activities like sitting take everything out of her. Well, she is eating like a horse so we have strict instructions to increase protein and fats - not easy on a vegetarian and dairy free diet :-(  How many beans can a kid eat? She has lots of nuts, eggs etc which help. Unfortunately sugar isn't included.

Starlight foundation bowled in and transformed Elise into a cat. It lightened the mood :-)

Sat 21 Jan 2017

Yes, she has been a bit nauseous post chemo but she is going well!

It has been a busy week in hospital - they are keeping us on our toes. This week we had our Tiguan photographed and measured (after a good clean and vac the night before!) - this is with view of planning our first outing. It is quite tricky transferring from the wheelchair into a SUV (it is too high) and then we have the logistics of fitting a hire wheelchair into a smallish boot. Nothing insurmountable.

Rehab has arranged, after a number of phone calls, a better wheelchair - it is to be couriered from Royal Children's (they have smaller wheelchairs there ;-) which is made for all terrian, to match our Tiguan. Actually her current wheelchair is an adult one and really is inadequate as the wheel is too far back and so is difficult for her to self-propel. It also weighs about 18kg.

If required in the future, a tailor-built wheelchair will be organised.

So it has been a full week - lots of arm and core-strength exercises, chemo and planning for our first real trip - Elise would like to go home and bake a cake! She is really starting to miss home.

Thur 19 Jan 2017

Chemo infusion is finally over. She is well, feeling like a pin cushion after multiple failed attempts of getting a good vein, but is ok! Doc decided today for another high steroid pulse of 250mg prednisolone for tomorrow so she will be attached to the IV drip for another day. Not the greatest as she can't move her hand - if she does an alarm goes off :-(

Despite all this, we managed an aromatherapy leg massage and stretches so we (Elise and mum) smelt wonderful! Thanks to those people who bought massage creams and oils - they have been great and much used.

Monash Hosp. has been wonderful - the specialists have been in significant contact with oversea's centres examining her case (as it is so severe) to ensure the best treatment possible. We are very thankful and blessed.

Wed 18 Jan 2017

At the last moment Elise had her Chemo treatment postponed today. To add insult her arms had already both been pierced in preparation.
Chemo is scheduled for early tomorrow at a dosage of 630mg.

While we were waiting for the doctors Elise did her daily exercises.

https://goo.gl/photos/BiTaLG9WFUpUeNdJ6
The above link is of Elise sitting unaided. As you can see its a real balancing act not unlike riding a unicycle. After 5 sessions of balancing for 30 seconds she needs a rest.

https://goo.gl/photos/fqR67ZcSkAgysFNP9
Exercise with small weight.

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.

Mon 16 Jan 2017

Yesterday Elise had a fleeting sensation around her hips. It felt like, "I was wearing something". This only lasted a few seconds then disappeared. A few moments later the same thing occurred.
This shows us that her senses are in the process of repairing. Very exciting, it's not a great "feeling" being numb downstairs. There is no rehab over the weekend, a welcome relief after the weekday intensity and an opportunity for some rest.

Sarah Alderson came early in the morning for a little meeting with Elise, again a very cheery setting under the Japanese Maple tree in the courtyard. We read Ps 32, "the Lord's unfailing love surrounds the man who trusts in him." It was easy trusting God and feeling his presence when everything was so intense and new, now the constancy of it is settling in a little and we need little reminders that God is still very active in our lives. 

Fri 13 Jan 2017

For some weeks we had been trying to find out when we could get an icecream/gelati from the hospital shop. It had been closed over new year and had just reopened. Our quest was to get one today.  As you can see, we succeeded :-)

Video of Elise being positioned in the standing frame. We were all pleased because she was able to stand with the assistance of the frame and play a game, for 13 minutes.
https://goo.gl/photos/vXHbtJ8RqZNhRdmC6

Video of the first solo (almost) transfer from wheelchair to bench. 

https://goo.gl/photos/uDkpG2www4sVi4Ry5

A typical not so typical day...11th Jan 2016

Arrived (Shannon) at hospital at 10am, later than usual. Today's schedule is quiet today.
So I though I would list everything that happened to give an idea of her day.

So this is what happened today between 10am to 4.20pm when I left to pickup Poppy.

10:00am     Cleaned room quickly and brushed Elise's hair, she did her teeth etc.


10:10am    Urology team of 3 arrived plus head Stomal/urology specialist to discuss bladder/kidney scans and future plans. 10:15am Rehab Neurologist arrived but left to come back later.

10:30am     Nurse, schedule changes

10:36-11:20am    Physio Tanya, gym work

11:25am   Nurse, move from wheelchair to bed via slider

11:30-45am   Urologist in for toileting

11:50am   Transfer from bed to commode for showering...mum helping with shower

12:20am   Neuro arrived, Elise not decent so they left

12:30am   Back in bed, Rehab neurologist Tripti and Head Paediatrician Sabine visit

12:50am   Rheum team arrive (3) Registrar, Head Rheum Sue Piper and Rheum/urologist Frayer

12:55am   Vistor - neighbour,  Laura who works as a nurse at Monash.

1pm   Finally lunch! Shannon massaged legs while eating.

1:15pm   Rush to set-up for nap. Repositioning, leg splints etc. Sleep

2:15pm   Man arrived to transfer to Ultrasound department. Ultrasound of bladder and kidney incl. catherisation and second scan.  Kidneys and bladder all good. Apparently Elise has an iron bladder!

4:20pm   End scan. Waiting to be transferred to room.
Scheduled afternoon Rehab cancelled.  Mum left to get Poppy.

Wed 11 Jan 2017

Elise is very pleased, no more heparin injections in her legs morning and night, no more bruises etc. She is mobile enough with rehab etc, blood thinning med's aren't needed. One more milestone.

Tanya of Rehab assists Elise as she loses balance during therapy

The key to recovery is Rehab. It strengthens remaining neurological pathways enabling a damaged system to regenerate.


video: Elise practicing her balance technique
https://goo.gl/photos/11HVkE5NdSwP8FMp6
https://goo.gl/photos/ibQqEU1qq5ojJDUs5

Tue 10 Jan 2017

Elise spent her second time in Art Room today and loved it. There is a good variety of materials and today she used watercolour to paint a paper feather that will go onto a multi-coloured owl.

Elise's inflammation is continuing to reduce as indicated by the blood tests. There are some more small hints of muscle control. Today she could slightly contract one of her side thigh and bottom muscles.

Today has been a struggle though, with physical challenges and doing things a kid should never have to do. This got her really down.
The music therapist played some songs to her in the late afternoon.

Photo: Elise inspects the building work near the site of the new Monash Children's Hospital during an evening stroll.

Sun 8 Jan 2017

We visited Elise first thing this morning and had a meeting with her outside in the warm courtyard...it was so nice sitting under a Japanese maple in 30 degree heat!
She is feeling well and sat up for breakfast eating it with enthusiasm. Afterward Poppy and Elise made some paper chains together, lots of fun.

Sat, Jan 7, 2017

Surgery started at 8:00 am and was successful. Elise made a fairly quick recovery from the General and had a visitor later in the day but took things easy.

Elise is very happy and feels free now that her neck and shoulder don't have things poking into them.

Fri, Jan 6, 2017

Elise played two games with a Wii electronic gaming device this morning. The Rehab people surely know how to make hard work fun.
She played one game of table tennis beating the Rehab staff member, then another game, but this time ten pin bowling, beating her father.

After a rest Elise then went to the art room and made a water colour painting and greeting card for little sister Poppy.

Video link:
https://goo.gl/photos/SqVCVSboo5tfHNuLA


Unfortunately Elise was due for surgery and had to fast today. After no food or drink for 25 hours the surgery was cancelled. The good news is that the surgeons were put to better use in emergency than with the minor procedure Elise needed.

Thu, Jan 5, 2017

Today Elise displayed some minor reflexes in feet and knees for the first time. This is considered a good thing.
We had a family meeting with the medical specialists to discuss goals for future progress. Tomorrow Elise is scheduled to have her Permacath removed under surgery (large embedded line to her neck artery). While it is a minor procedure, Elise is scared of yet another invasion.

Photo of Elise straining to keep her leg in position during rehab work.

Wed, Jan 4, 2017

The Rehab continues with intensive work. Elise went to the Gym for the first time today for challenging muscle strengthening exercises. She also experienced the "Standing Machine". This was a scary process that helps her become re-acquainted with being vertical.
https://goo.gl/photos/Uyz8hssYU7NPBNob6

In the afternoon Elise enjoyed looking at the miniature roses in one of the courtyards which is just outside her bedroom.

Tues, Jan 3, 2017

Rehab was full on today.
Lots of activities and tests taking great care not to tire her out.

https://goo.gl/photos/z7VMXMquLpi44k7V9

https://goo.gl/photos/qQ1obKALSRpP3Vt99

Sun, Jan 1, 2017 at 7:56 PM

This morning we were able to have a memorial meeting together in a quiet courtyard in the hospital grounds. We read from Daniel 6 where Darius says of the LORD "He rescues and delivers and performs signs and wonders..."

We all pray for this deliverance, particularly for Elise right now.

Elise gets into her exercises but tires quickly and nausea is still her regular companion.

Wheelchair test below

https://goo.gl/photos/dJxJ8VJzaC7kCi6F7

Fri, Dec 30, 2016 at 7:23 PM

They run a tight ship at rehab. Today Elise was doing rehab activities from 9:00am till 12:30pm without a break. Part of it was making cupcakes with icing, using one of Elise's original recipe's. There was much hand mixing that gave depleted muscles a workout.

In the afternoon Elise was able to detect slight brushing on her skin in some places on her legs and feet. Another milestone.

We are all thankful that remarkable healing has begun.

Videos of Rehab
https://goo.gl/photos/zBGkgeUH7v5yBmey9

https://goo.gl/photos/sVESkzHqoLpTUTua8

https://goo.gl/photos/6UeKdJK6vUaTKBuu8

Thu, Dec 29, 2016 at 9:48 PM

During rehab today Elise was able to have, with great difficulty, a minute degree of moment in the hip. She repeated her new-found skill two more times and was then exhausted. The staff were very excited as this is quite early.

Elise had a really good day and thanks all that pray.

Wed, Dec 28, 2016 at 9:01 PM

Today Elise commenced rehabilitation.

A timetable has been drawn up and the team has started trying to maximize recovery.

Elise has just experienced the slightest sensation of feeling in her legs and abdomen. She was actually just able to "feel something" when having an injection.

We can't put too much hope on this as it's early days, however we believe it to be in the right direction. 

It should be noted that while the paralysis of the legs are the most dramatic thing happening, the Lupus continues to be very bad with the markers in blood tests showing extremely high levels.

Please continue to pray for all her conditions.

https://goo.gl/photos/BDAxDT8qadgvGCHb6

Sun, Dec 25, 2016 at 4:20 PM

Elise says, "Thankyou to all the people that have put time aside to help the family. Being in hospital, particularly at Christmas, I have seen a lot of people putting themselves out and showing kindness to help others."

Sat, Dec 24, 2016 at 6:58 PM

Elise is in high spirits today and feels that she has been blessed by god in that her nausea and general wellness have improved immensely.

The chemo hasn't made her ill at this stage and she has been able to eat more heartily than she has for months. 

Elise thanks everyone for cards, and prayers. 

Below is a link for Elise's Christmas Message. (After all her initials are ER.)

Yes, it's a little early but this way we beat the queen.  

https://goo.gl/photos/8E6V6rkPsbAz9cT46

Fri, Dec 23, 2016 at 5:02 PM

Elise is asking for strength in prayer today as her new medication starts. As she felt sick with a previous steroid sparing agent Elise is quite scared as to how she will get on with this one.

Please continue praying for her as this represents a real hurdle. 

Update

I just called the hospital and Elise is feeling much better. She's had lots of anti nausea treatment and had brightened up considerably. 

Earlier we were praying for encouragement and immediately afterwards the head neurologist came in and said some things that were positive and cheered us both up. Elise and I both thought of that visit as a direct answer to prayer.

Thu, Dec 22, 2016 at 5:25 PM

Elise had a successful lumbar puncture today and is enjoying her new room. It's large, private and has a view of the sea if you stand on your tippy toes and use imagination.

The kind ladies from OT tried her in a chair and wheeled her around to get her body used to movement. Everybody was pleased with the experience.

She is on a new and powerful cocktail of medication and we pray that it will be a positive experience.

Click on link for a message from Elise

https://goo.gl/photos/UCKMPvvBPuufKF4D8


Cyclophosphamide is going to start soon along with  Immunoglobulin transfusion.

The chemo will be a month for 6 months with the "normal" dose if she responds.

Wed, Dec 21, 2016 at 9:19 AM

David

Elise is delighted with the flowers and told me that she kept looking at them when she woke up. 

Thanks. 

Elise has really been enjoying the flowers that you sent. They are magnificent. Today had a bit too much excitement at one point as the lumbar puncture procedure wasn't successful. Another attempt with a different technique is going to be done tomorrow. Her schedule is incredibly busy with much going on at the hospital with specialists and other medical staff.

We have been delighted and thankful with all the support. 

Tue, Dec 20, 2016 at 5:32 PM

Daily Health reports are a bit like moon landings, the population gets very sick of it very soon.

Don't feel you have to publish anything but here goes.

Elise was considerably brighter today and eating a very small amount which is so much better than practically nothing.

She has been soothed with music therapy from what looked like a wandering minstrel and was presented with a beautiful quilt donated by a Waverly Quilting group. 

Elise will have another MRI to assess what the treatment is achieving at 7:00 pm.

Her parents are benefiting from the marvelous organic fruit and veg sent to our home from the Canterbury family. Thanks to all for prayers and support. 

Elise's godly attitude remains inspirational.

Mon, Dec 19, 2016 at 9:36 PM

I'm with her now. She is much better in herself than the other days.

Her attitude is exemplary. 

The specialists are giving her the works but as you know its a long road. 

I'm pleasantly how time generous the specialists are. 

Elise had just had a little to eat today which is a first for quite a while.

Her upper body was never paralyzed however it became very weak with the onset of the condition. We are very pleased to see that the upper body is much better over the last few days.

link for Plasma Exchange below
https://goo.gl/photos/d2W91G7sQ3AYSfyv7

Sat, Dec 17, 2016 at 5:27 PM

To clarify, another name for Elise's condition is Transverse Myelitis. In some ways kind of like Polio.

The treatment is continuing as planned and today she was taken in a chair for a test ride. Her lack of appetite is a continuing problem.

Elise's attitude remains outstanding. 

Further reading:

https://en.m.wikipedia.org/wiki/Transverse_myelitis

Much further reading:

http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

Fri, Dec 16, 2016 at 11:21 AM

Acute flaccid myelitis is the name of her condition. She is very sleepy today but bright and happy when awake. She met "Santa", a very poorly disguised hospital worker that we had a laugh at. She has shown a wonderful godly attitude which has been a huge example to me. Thank-you all for prayers and notes.

Fri, Dec 16, 2016 at 7:54 AM

She was in surgery for 1 and a half hours. She slept all the way through the plasma treatment. She is resting now and Shannon's in there and had a good night sleep too. I'll be going in in a few hours.

Fri, Dec 16, 2016 at 6:23 AM

The initial diagnosis is

Acute flaccid myelitis 

I have asked Heather to look it up and tell mum. 

Elise had a good night after 1 and a half hour surgery then the exchange. 

I am very weepy.

Thu, Dec 15, 2016 at 3:59 PM

Specialists are on high alert that the paralysis won't get to the lungs. They may put her in ICU and give her surgery today as they want to give her a plasma exchange. ie. to clean the blood so the immune system will stop attacking the spinal cord.

Thu, Dec 15, 2016 at 11:21 AM

Had 2 MRI's.

The neuros have just left. 1000mg iv prednisolone. Demyelination of spine. Brain OK. 

Spinal tap to come. General anesthesia to get big blood line in neck. Going to filter blood. 

At least 7days here.

Thu, Dec 15, 2016 at 1:28 PM

She has had a temp for weeks. It was only about 38.5 degrees C when I brought her in. (It has been hovering around 38-40 for a couple of weeks - but that was when we decided to start checking.)

They are giving a plasma exchange. 

They don't yet know if it's an infection or the lupus. They don't think it's the Methotrexate.

Shannon is just about to arrive to relieve me. It's been a big day.

Note:  Elise has been very sick for the last few weeks. The last two weeks she has been mostly in bed, with constant high temperatures, high nausea, headaches, almost not eating anything and in significant pain. Pain being mostly lower back, around the spine and radiating down the legs. We've been giving daily back and leg massages to help the pain. She was also having trouble urinating and bowel motions were causing tears. Rang the Rheumatology clinic on Monday 12th concerned, perhaps caused by increase in Methotrexate dose from 10mg to 15mg per week (was increased the previous week). Clinic advised stopping methotrexate. So no MTX on Monday night. Elise deteriorated, rang Pain Clinic on Wednesday concerned about her pain and they said they would call us back. They didn't get back to us and Wed night Elise was in distress.

Thursday Dec 15, 2016 at 4:21 AM

Note to My Brother
15.12.2015
I am with Elise in emergency. She has lost all movement of legs and feet. Hasn't urinated for 24 hours. I am distressed and frightened.