Sun 26 Feb 2017 The fun that you can have at home.

Elise decided to do some cooking after her first sleepover at home. Pikelets with sunflower seeds hit the spot ;-) Appetite has returned!

Mixing up the goodies

Cooking and flipping

Yummy end product

 Video link below of the whole production

https://goo.gl/photos/Ti1W1rwHE8xioEgF7

She really has enjoyed being home, a rare opportunity to muck around like kids do. Hopefully, she'll be able to come home each weekend now and begin adjustment to real life in little steps.

Sat 25 Feb 2017 First night at home for a long time.

A wonderful sunny day and a good time to have Elise's first weekend leave from the hospital. One night back in her bed, albeit with an expensive rented computerized mattress, is a welcome change.

I pushed the wheelchair for Elise, with both Shannon and Poppy accompanying. Elise keenly reacquainted herself with Hughesdale on a perfect sunny day.

Her shoulders are extremely sore because of all the extra work they have been doing so Shannon gave a good massage. This hurt her considerably but provided huge relief. We have decided to give serious massaging on a regular basis from now on. Any masseur would be welcome :-)

Sisters doing stuff together

...they still fit on the bed...

Massaging a very sore back

Video link below of Elise rolling on the bed by herself without using her arms. A difficult feat.
https://goo.gl/photos/BsBzeTJFFzrWivvXA

Friday 24 Feb 2017 Fun time

The Rehab team has a music therapist, unfortunately Elise has been too busy to see her much. This week has been different, unbeknownst to me, they have been preparing a song...to record....something about Hospital blues!

Amy and Elise during a recording session

Who said hospital can't be fun! For days Elise has been very excited as her cousin Abby, is coming over for a Friday night sleepover - movie and junk food.  Also good way to fatten her up! She has lost too much weight so we are not shying away from fat - high protein and fat for the next week or so.

Fresh hot chips and hot choc almond milk

Friday 24 Feb 2017 Nerve sensitivity

I spent the day with Elise which I haven't done for two weeks now. Normally, I have been spending the evenings with her as I go straight to the hospital after work. My routine usually is...arrive from work, eat something (leftover hospital food of Elise's - yum :-( !   ), go for hour long walk around lovely Clayton streets, stretches or physio exercises then bedtime jobs and go home, share medical news with Shannon then straight to bed.

The difference is that all the therapy is done during the day and it was interesting for me to see the improvements that she has made. Moving around generally is much easier as her upper body has healed more and along with strength and technique, her mobility is vastly improved. For example, she can turn over on her bed now quite readily which was impossible a few weeks ago.

Each Friday the Physio Mahek does the ASIA test - a skin sensitivity test to determine which spinal nerves are communicating with the brain. Every week there is a slight difference, slightly more feeling below the T10 level. At this stage, every little bit is a celebration. First sensation recovery then motor recovery. It is easier to cope when she continues to improve.

https://goo.gl/photos/PmZGgfqzTJcejuH6A

Mon 20 Feb 2017 Lupus strategy

Elise had an excellent weekend as she had lots of friends and relatives visiting while we were enjoying a well earned break at Blairgowrie. Elise has been feeling a bit sick and nauseated post chemo, but managed to enjoy herself anyway.

Today we had a family meeting with the Rheumatologists to discuss their long term Lupus strategy. Not easy listening to them discuss it's severity, rarity and uncertainty of treatment results. It is a real balancing act...just like a real chemistry set.

Her next dose of chemo is likely to be very large, maybe 1000mg, depending what her bloods show over the 3 samples taken over the next 14 days. Hopefully, she won't need the high dose as she is feeling sick enough as it is.

Unfortunately her body weight has recently dropped 25%, much of it being muscle. The fact that she has been off her food doesn't help! She has been eating a bit over the last couple of days though. Received a strong lecture from the Nutritionist today, "no she doesn't have an eating disorder!" Elise loves food, but when you're sick and constipated at the same time eating loses it's shine.

Thu 16 Feb 2017 post chemo and methylprednisolone

Elise had a fairly poor sleep post chemo last night but had quite a good day with only background nausea. She started the day with a pulse of 750mg of methylprednisolone and then was able to get the line out of her arm much to her relief.
I had to laugh last night as the chemo gave her a headache and she asked for something to help. The nurse did the right thing and said, “I’ll go and see what dosage you get”. She came back with one Panadol! They had just just happily administered poison to her that amongst other things causes hair loss, nausea and your bladder to bleed and one Panadol was the best that could be done. Ha Ha

Wed 15 Feb 2017 Chemo today

Elise had her third dose of Cyclophosphamide today, an increased dose to 750mg. It takes about five hours including hydration.
Elise was happy throughout and we pray that there will not be too much nausea afterwards (taking into account she is on anti-nausea medication).

On Chemo drip

All Chemo contaminated waste incinerated

Delighted that her school class signed cards