Our journey Ends...

WE ARE HOME!!!  I love my little house and the people that live in it.  There is nothing like a trip to the desert for a month to re-inforce what is near and dear to you.

Two last pictures.
The first is a video link to the Professor waving as we pulled off in the Taxi, leaving behind the beautiful, therapeutic, moody and oh so salty Dead Sea. 

http://www.youtube.com/watch?v=godRlAC8gU0



 

The picture below is Darcy and Yanna, washed and wearing their winter woollies (cold in Sydney today - compared with the desert anyway) sitting on the couch having their first ever coffee!!  I need them to stay awake until dinner time, so desperate times call for desperate measures.

BTW: the house and the husband and the first born were all sparkling this morning.  Thanks dear for managing the home front.  Love you.

Finally, here ends my blog. 
Some stats - I had over 2000 reads and whilst not all comments were published, I loved them all including all the emails (it was hard to keep up, but I tried). I loved doing the blog.  Learned a LOT!!  Thanks again blog-family.
 

Dubai bling

Dubai all bling.  Flashy cars, marble and high end shops.
We are well.  On our way home tomorrow.

http://m.youtube.com/watch?v=4luuMnFTRp0&feature=plcp
http://m.youtube.com/watch?v=QIL-RhUL8to&feature=plcp

Thank your lucky stars

All good to go.  We are waiting in the lobby for our airport car.  All packed and looking forward to Dubai.

This morning in the buffet, we said good bye to the lady that has been bringing around the tea and coffee for the last three weeks, her name is Jennifer.  I asked her if she lived here. Jennifer said that the Hotel brings out staff from the Philippines - about 20 women and 20 men.  THey have been here for more than 2 years.  Jennifer said that she really misses her daughter who she has not seen for more than 2 years.  Jennifer is working here to give her only child, an 8 year old daughter a better life.  Darcy burst in to tears (I was choking the tears back too).  A sad story and a unimaginable sacrifice for her to make.  I am so thankful for my life.

Last night we had a few drinks with the Prof and other patients.  It was a lovely night.
See you from Dubai.  xxx

Last drinks!!!

We are almost finished our last treatment.. then we are having a white wine with the Prof.
Can't wait.  No more business... all pleasure.  I have to at this point say that the Prof has been so fantastic and so keen to help and give her time.  Incredible patience and a genuinely love of the kids.
Hello Dubai.....

I am trying to post a video and it aint happening.  Stay Tuned....

Bingo!

http://m.youtube.com/watch?feature=plcp&v=wzdUYUqhUZU

More boring Dead Sea floating

http://m.youtube.com/watch?v=qoOEZceSCO4&feature=plcp

Sorry guys, I cannot load videos as I have done so before.  I think this link still works?

Pictures of happenings

Here are the latest and greatest.
1.  Darcy next to her calendar with all of the Treatments days marked off.
2.  Darcy aged 4 in Greifswald.
3. Kids in Dead Sea yesterday

LAST DAY OF TREATMENT!!

I can't believe it, she's done it.  No mean fete.  Am so proud of her, and Yanna, who has got on board the team.  From those very first days of terrible stinging eczema (all but gone), to hours of lying in the sweltering heat, battling through misery, the end is within sight.

I will upload some various photos in later posts.

One extremely frustrating technology hitch is that I thought I recorded Darcy's skin under the Woods Lamp.  I heard the appropriate beeps and thought all systems were go, but alas, there is nothing on the machine. Sorry blog world, I really wanted to share this and how you can see the pigment below the skin.  We'll have to just wait for the pigment to show itself.

Easy day planned.  Packing and finishing up the Jordan chapter.  We are looking forward to Dubai before heading home.  A wee holiday and maybe some shopping as well a visit to the Burj Khalifa. 

The Dead Sea was truly spectacular this morning.  A sign maybe of all things being good.  The weather was perfect and clear, wee could see for miles, the water was a beautiful temperature and crystal clear.  Lovely.

Happy Mother's Day to not only my fabulous Mother, but also my favourite Mother-in-Law Beth, Mother of my beautiful husband, so she has done a good job with him, and all the Mothers out there.  

Love to all.  xxxxxxx L D & Y

Appointment with the Professor

First Treatment, check.

Carrot Juice, check.

Lunch, check.

........ Appointment with the Professor regarding Darcy.

Agenda:

Review of initial photographs

Woods lamp review

Further photographs

Diet

H2O2

Handheld lamp

Mottling

Knees and teeth

I took photo's of the initial photo's.  Angela and the Prof only had hard copies.  I will try and get these from my phone on to the internet.

Woods Lamp showed repigmentation around the final bits of her eyelids and under her eyes.  Darcy's eyelashes are so long (such a curse) that the Professor advised trimming her eyelashes so that the sun can get to this area.  There is no way on God's beautiful Earth that Darcy will let me do this.  I think this is the battle that she will win.  Enough said.

 Woods lamp showed nothing on her stubborn armpit.  Zip.  Disappointing, but still we have hope with the lamp at home.  What we can be grateful for is that it also has not got bigger which is a major challenge for many of the patients here.  For them it is not about re-pigmenting, but about stopping the spread over their whole body.

Woods Lamp did show some spots on her knee.  Hooray.  This is a bad dot and one that is difficult to cover.  Fingers crossed this one goes full throttle and re-pigments.  Good News.  I am very happy with the results.

Angela (Prof's offsider and work partners for more than 20 years) then took further photos f Darcy while Prof and I chatted.

No changes to the diet except no tumeric and no chilli.  We knew this.

Higher levels of H2O2 are also associated with Arthritis.  Prof thinks we should first get Darcy Proper orthotics for her shoes as she antenates on the insdie of her foot to a high degree (we have already started this process).  Also, no Celebrex as prescribed.  Manage it with panadol and if really bad ibuprofen.  Prof says she will grow out it.  Crossing more fingers.

There is no need for us to get the handheld lamp.  Our existing lamp is good for the job.

Mottling - Darcy's re-pigmentation on her face is not discernible.  You cannot tell where her pigment has come back.  On her neck however, the patches remain mottled.  We spoke at length about this and Prof says that this is common.  The face comes back awesomely and the neck remains patchy.

We now have another cream.  #7 cream.  Further info on this later.

Will have to apply once per day at night before bed just on her neck.  It might help even this mottling.

Knees - addressed above.

Teeth - Darcy has Fluorosis (also called fluoridosis) where her body concentrates the fluoride into spots.  Nothing to worry about.  Keep feeding her fluoride-free toothpaste.

So we left, the Prof then writes me a big long love letter advising me of the treatment at home.

Feeling very positive.  Once again, what was basically a leap of faith has hopefully turned out to be helping our beautiful little possum.

Lovely skype with Oma, Poppy & Harper, as well as with Emily and MDG.

AsI type, we only have 2 treatments left.  Yipppeeeeeee!

This afternoon.... in the Dead Sea for the 3rd last time, we said goodbye to Yanna's tooth and made a wish.  So far Emily has thrown a tooth in Lake Lucerne Switzerland, Darcy threw one in Kingston Wharf, Norfolk Island and now Yanna in Dead Sea.  I wonder where for Harper.............................

Giving it a go...

See if these two links work... fingers crossed.

http://m.youtube.com/watch?feature=plcp&v=3dB-i7A0noI

http://m.youtube.com/watch?feature=plcp&v=OIEQajvapYA

More photos

Still having no luck with videos.  Will try and just post the youtube link.
In the meantime...  here are some more photos. The first photo is where we stopped in Madaba for a coffee.  Next, outside the Greek Orthodox Church housing the Palestinian Mosaic.  Last is a panoramic view as you descend down from Madaba towards the Dead Sea - visible in the middle distance.  I realise this is difficult to see.

Treatment 11/5 - 2 days to go!!

Up early to skype with Matthew as we wanted to wish Emily good luck in her Water Polo game. I hope that it went well Emily.

Only 4 treatments to go, only 2 carrot juices to go and only 4 more sleeps until we see the gang again.

Antioxidants... and interesting finding.  Antioxidants (as found in green tea, blueberries and red wine (there is a God)) react with the H2O2 - hydrogen peroxide in your skin.  They are also active in your liver etc. For the non-Vits among us there is nothing to worry about, but for the Vitiligo people who have abnormally high levels of H2O2, the antioxidants levels max out earlier.  Apparently, relative to your skin, once your anti-oxidant levels reach a certain saturation point, they are all rendered useless.  Vit-people should therefore not have too many if they are to get the benefits of them (they have a lower saturation point).  Interesting....

There is some massive International Convention happening here at the end of May.  Like a UN meeting type thing, or perhaps a Bob Carr might attend type meeting of the minds here at the Dead Sea.  Yesterday scary looking military helicopters were patrolling the shores.  I didn't know if there was bad stuff going on in the zone.  There are also tents and flags and barriers being set up everywhere.  

So.. off to treatment... I will try and upload some videos, getting pictures uploaded OK but not so easy with videos.  Cheerio to everyone and thanks for all of the messages.  More later.  xxxxx

pps., the wind is really strong this morning so Dead Sea off limits, to choppy.  Waves are crashing on the shore.  We are therefore in the outdoor pool.  Only 6 patients left!

Photos from Madaba

A lesson in child psychology

A while ago... I have been busy... Christian Krueger PhD sat with me and we chatted one on one about the psychological effects of vitiligo.  Christian has not only conducted a comprehensive literary review soon to be published but also recently conducted his own study on the psychological impacts of childhood vitiligo.

Christian was a wealth of knowledge and I thank him for sparing this time for me.

He spoke about the impact of being stigmatised as being someone with vitiligo and also competencies and the need for all children to have one.  

Stigmatism

People with extensive obvious vitiligo cannot meet people without it being one of the first thing that they discuss. This then stigmatises the individual.  They believe that this is who they are because it is continually reinforced by people. Here we explored the Explain, Reassure and Distract technique.  See previous post. Very useful tool for the kids.

Competencies

This is "your thing", those things that define you.  "Hi , I'm Emily, I'm 11 years old, my friends are A,B and C, I have 3 sisters and I love water polo.  We train 3 times a week and play a game on Saturdays".  Water polo could be described as Emily's competency.  It's that thing that the kid loves. You don't need to be good at, just love it, and love doing it. Christian said that every kid should have a competency but especially kids with physically challenges so that they see themselves as being this thing, not the kid with vitiligo.

So... We then thought that it would be quite useful to have a session with the kids where we put these findings and strategies into good use.  We did this for kids club.  Christian and Paula ran the show.  Paula is a cognitive behavioural therapist (CBT) working with the NHS in the UK.  Paula is also a world class volleyball player (no jokes) and is here to help the Prof with kids club, physical activities and kids without same gender parents. *

The first thing the kids discussed was their own experiences of teasing. It quickly became evident that the kids were unable to discern the difference between curiosity and teasing**. Mostly they ought they were one the same. That is, all bad, and made them become defensive.  Paula gave them some great strategies to cope with teasing (applicable to all teasing, not just Vit-teasing). 

This session was very ad-hoc, so we have discussed with the Prof how this might become a regular thing for the kids.

References

Disease related behavioural patterns and experiences affect quality of life in children and adolescents with vitiligo. To be published in the International Journal of Dermatology in June 2013.

*when kids come to the Dead Sea, ideally mothers should bring daughters and father come with their sons.  This is not always feasible so there is a helper to the Prof in the girls (not women) solarium and likewise in the boys (separate from men) solarium. It makes sense that girls would feel uncomfortable being naked in front of other dads.  

Best to keep this in mind when planning your trip.

** that is, they could not tell that "hey what is that white mark on your neck?" is natural curiosity. They were defensive about this sort of enquiry.  With some other examples, the kids could recognise that if someone new started at their school who, say had one eye, then they might have some questions.  This is not teasing.  

The kids could always recognise real teasing without a problem. Eg., "nice grey hair granny". This is one example. 

Bell tower in Madaba

A day trip to Madaba

A late-ish might last night.  The kids stayed up and danced to the band (should be called The Mullets.  World class mullets, all 5 of them. Or perhaps Same ol' Same oil' because they sing the same stuff every night.  I shot the sheriff, Sway and Girl from Ipenema.  Anyway, the kids danced. So a little lie in this morning before Dead Sea at 750 am.  Nice sunshine and another good chat with the Professor.  This time regarding antioxidants.  

Then...  Off to Madaba.  A 45minute trip east up to sea level. A lovely little town famous for mosaics and shrine to John the Baptist.  So we arrived and I had a cappuccino before strolling around the town and then visiting St George which has a mosaic map of Palestine dating from 560 AD.  It was lovely to sit in the church.  Next we had lunch at Haret Jdoudna - had to work out what to order, but safe to say, we ordered too much. I asked for a photo and the guy took a photo of the table.  Next we set off to climb the bell tower at the Catholic Church in Madaba which houses the shrine of the beheading of St John the Baptist.  The top was a bit hair-raising but the view was pretty impressive, not quite Paris, but quite the view.  Next you descend beneath the church to a Moabite Well dating from 3000 years ago.  Really interesting and well restored.  There were also beautiful mosaics here as well.

Our driver was waiting at 130pm as agreed and we came back to hotel.  Now we are leading and getting ready for the afternoon session.  After this treatment, only four to go.

WooooHoooooo.

Some photos and video to follow.

A hotel room without a Bible

Can you believe it?  For the first time in my life, I am in a hotel room without a Holy Bible... and I need one.  Tomorrow (Friday) we are off to Madaba for the day, just the three of us on another leg of the Middle Eastern adventure.  This is where John the Baptist was killed and also not too far from Mt Nebo.  Also Moses got up to some stuff around here too.  Major Jesus country- I wish I could recall more from Sunday School in 1983.

Normal treatment today although quite overcast this morning.  The solarium was down  4 girls, with only 4 remaining.  A calm quiet morning with even the mums relaxing in the solarium... Sun baking... Although - do not gasp in horror.  Firstly, it was between 8am and 930am and it was overcast and thirdly we are in spring here, approaching summer in June.

It was lovely.  Hopefully a sign that finally, in these last days, we (read: I) can relax and enjoy this beautiful spot.

Afternoon treatment smooth as.  Dead Sea 4 pm - the kids have taken to wearing their bathing caps so that they can lie back in the water.  The DS does dry out the hair beyond description.  The water was again quite choppy.  Shower, cream then 20 mins in full sun then the rest of the time in the shade.  Last kids club today, so I did a run, although hardest runs I have ever done not only because of buffet damage but also 40 degree heat. I drink 1.5L in 30 mins.  Totally soaked.

I'll do a video of the buffet to explain visually how I am fighting a losing battle.  

Can't believe it but I am starting to think about getting outta here.

It's the final countdown.... Da na na naaaa, da na nah-nah naaaa.....

A conversation with the professor

Me: Will you consider coming to Australia?

Prof: Sure! Are you inviting me?

Me: ABSOLUTELY!

So, there you have it.  The Prof and Angela are keen to come. Tanya.. Hop to it.  Draft something up.  We would have to organise meeting rooms etc, but it think we should maybe send her an email asking when she has a spare 2 weeks to visit and host meetings (with vitiligo groups and no doubt she would have her own schedule with other academics & dermatologists) and a clinic for patients.

Send me your thoughts.... Only 4 days to go.

Everyone is leaving me!!!

Everyone is leaving me!!! 

Our wonderful Scottish friends, Karen and daughter Eva have finished their 3 weeks and Aussie Anne and daughter Talia also have set off for home.  Also the lovely Viepke and her Dad Vinnie are returning to Germany.  We were part of the third (and final) wave to start and therefore are one of the last to leave.  I am so happy for them and wish them all the best for their future and their vitiligo.  We will miss you guys so much and I really hope that our paths cross again.  

Matters administrative : Kate & Jason, have a fabulous time in the big apple and surrounds.  Safe travels and happy memories in the making.  Don't forget, be spontaneously spontaneous.  It rocks! Ps., thank you for all the supportive comments, I loved hearing / reading them. xxxx

So Vit-news.... Treatments have not changed, still DS, and 4 x 15 minute in the sun (morning) and shade (afternoon).  Cream after the Dead Sea and then at night before dinner - after a shower.  As we approach the end of the 3 weeks, you have a final meeting with the Prof.  Here she looks at you under the woods (UV) lamp and sees any progress.  Note that the skin is deep, the woods lamp shows deeper layers that we cannot see. It is not expected that you re-pigment that much over here, but in the coming 3 months, fingers crossed for some brown dots that emerge from those deep layers.  I am intending to also ask the Prof about Darcy's bung arthritis knees at this time.  I left the results with her at the check-in meeting a little over 2 weeks ago.  I expect that at this time, she will also advise the light machine schedule to continue with.

Our final meeting is scheduled for 220pm Saturday. 

There is also an article just published about sunshine.  A University in Edinburgh has found that the health benefits of sunshine (not burning, or sun baking) far outweigh the risk of cancer.  Apparently they found that some exposure to sunshine, is actually beneficial to your health.  I will try and find the link and post it as I would like to know more about these findings.  

So, as at Thursday 9th May we are all well and despite missing home terribly, are in fairly good spirits.  The buffet is killing me (literally), I think I  have put on 3kgs despite my daily runs and aqua aerobics. Will have to take drastic measures upon my return home.

I am going to try and organise another day trip on Saturday to nearby Madabar. Keep in touch and love to all. Cheerio to auntie Sarah - love your 3am comments, keep 'em comin' lovey.

Treatment 8/5 - part 2

Easy afternoon.  We lay around the room and watched the Spider-Man movie.  Toby Maquire is such a sweetie! Back in the DS at 4pm.  It was all itchy today. I don't what the science of that is but it was.  Then 4 x 15 mins in the shade.

A bit "down" today.  I really miss my beautiful girls at home and my fabo hubby. I skyped all today but not the same as being with them. I know that we have good days and bad days so maybe I'll feel a bit happier tomorrow.  It has been such a long trip and so far away.  Only a week to go so we'll get there.

Lucky that my family is so helpful and supportive and putting my needs before their own.  I am eternally grateful this and have no idea how I could ever repay them. All suggestions welcome.

I have lots more to write about sun, vitiligo, creams, treatment etc but just not up to it at the moment.

A public thank you to the superstar yummy DonnaLee for spending the afternoon with Emily G.  You are a fabulous role model for my gorgeous girl.

She reported that she had a wonderful time. So much love to all, I miss you all terribly and can't wait to come home.  xxxxxxxxxxxxxxxxxxx

Fūnfzehn minuten sonne

A maaaaasive sleep, then 745 am in the Dead Sea. A wee bit chilly in the water this morning, but still lovely.  Yesterday, hard to believe but the sea was choppy.  It was not windy but the sea was wavey. Today:  20 minutes in first position (Darcy has wised up to it, and taken the extra 5 minutes on like a trooper), then 3 x 15 minutes as per usual.

I am pleased to say that my blog has had over 1200 reads! That is great, the faithful peeps sharing our experiences and spreading the Vitiligo word.  I would love to hear your thoughts and questions so send them through.  Only 5 days left to ask the questions that are out there.

More pictures....

Reading before bedtime and all girls in the solarium.  Normally they all lie completely starkas, but we covered up because we are laaaaaydies,  all gorgeous girls.  Darcy with the sunglasses on.

Downtown Amman

Pictures from Amman. Spice market and mosque.  A beautiful, friendly city full of atmosphere. We love it.

Downtown Amman

Treatment 7/5

Not such a good sleep last night but we'll cope.  Up early and in the DS at 730am.  Beautiful once a gain.  The water is crystal clear and now feels so nice on your skin.  It still stings if you get it on your face or in your eyes.

First position was 20 mins ( ssssh! It is a secret) and then 3 further positions of 15 mins each.

We are all quite ecstatic about the Prof's research making the newspapers across the world.  The study mentions Bradford University which works in conjunction with the Prof's hometown university in Greifswald, Germany.

We are off to Amman later today - after breakfast.  Shall report back then.

 Back again - post Amman.  We had such a lovely day.  It was lovely to travel deep into the heart of Amman.  A beautiful city.  It took us a little bit over an hour to get there, lots of traffic, even at 11am.  Upon arrival we designated a meeting point before setting off on our own.  We looked in lots of market type shops.  Souvenir shops, fabric shops, nik-naks, bric-a-brac and everything in between.  We bought a few pressies, then ventured deep into the spice and vegetable market behind the mosque in downtown Amman.  We then met for lunch at a recommended restaurant.  At the end of a lovely lunch of flat breads, hummus, lentils, tomatoes and felafel we paid a total of 9 Dinars = aud 10 for all 6 of us!!!  Then we went back to the spice market as Natalie, Sam and Paula missed it.  We were picked up at 215 and home to the hotel at 3pm.  A great day.  Dead Sea at 4pm.  We now just want to "dive" into the ocean.  Desperate for a "normal" beach.  Where is Horseshoe Bay at SWR when you need it?

1 hour of sun (in the shade) then happy hour with the mums as it is Anne and Karen's last day. Dinner and bed.  

A lot of talk about gray hair coming in from Aus, yes, this is the very Professor that is treating Darcy.  Now world famous!  Hopefully we will see more research in to vitiligo as a result.

The Prof makes the Sydney Morning Herald

Check out this link from the SMH online 

The prof made it to smh!!

http://m.smh.com.au/world/scientists-find-cure-for-going-grey-20130506-2j3to.html

14 treatments to go.  I know we'll get there.  Dead Sea 8am. All good. The kids played around again becoming quite confident in the sea, only mild itches now.  The eczema between Darcy's knees is almost completely gone.  Everyone has the most beautiful healthy tans - no sunburn anywhere.  Lying on the bed for an hour though is so hot.  I gave Darcy  20 mins in first position, then was quite relaxed as she lay around for the remaining 45 mins (3x15 mins).  You have to balance between being really strict and it ending up in a fight and still getting her to be in the sun.  It is really hot, a heat that feels like it is pushing itself on to you.  Tomorrow, I and a few others are starting earlier.

The kids played after breakfast, setting up large empty water bottles and using a handball to play ten pin bowling in the foyer area outside some vacant meeting rooms.  Very industrious.  We had carrot juice at 11am.  Darcy didn't as she is on a strict diet of pasta, bread and tea following her upset tummy issues.  She is feeling better by the way.

Kids lunch (white foods for Darcy) was followed by a snooze.

4pm in the beautiful DS - it really is beautiful in the afternoon.  It is so cool and quite refreshing.  I coated Yanna in mud (sorry, I forgot the camera) while Darcy and I played.  Some crazy Austrian bloke took a fishing line down and pretended to fish for mermaids from the pontoon.  The kids thought this hilarious.

1 hour in the shade as per usual. Then kids club.  I normally go for a run and a swim at this time, but today I went to "happy hour" with the other mums.  It was lovely to sit and relax and have a glass of wine. Dinner was great with the kids now sitting at one tab,e and the mums next door.  Back to the room for bed at 930pm.  Enormous days.

Bad news: the iPad has been dropped (what goes  on tour stays on tour, not mentioning names).  The screen is cracked in a zillions places and its looks so unpretty, but..... It is working.  It just has to get me through the new week. 

This ain't no holiday!

A difficult morning this morning.  Very very hot. I think tomorrow we will start earlier.  Darcy was up throughout the night with upset tummy but God bless the little trooper, she fronted up for treatment. So hot.  The DS is beautiful and we are really enjoying that bit, but lying in the sun is tormenting. I secretly set the timer for 20 mins this morning in that first position so she gets a really good zap.  After that I moved her head into the shade.
The Prof gave her a tablet for the toilet problems and advised bread for breakfast and no rocket-fuel carrot juice this morning.  Taking it easy again today. Tomorrow we are going to Amman on a day trip so need to be fighting fit for that. We are going to the market (souq) area of downtown.
I also spoke to the Professor at length about the gorgeous Emily's eczema. She has a special eczema home brew (#4cream) that she is happy to sell me. Also salt water and sunshine.
A point to clarify: the Prof does nor recommend at any stage midday sun.  We are only ever in the sun first thing or late afternoon.  In fact she goes out of her way to stress this point.