Friday 21 Nov

We`re going home!!
I made the most of the morning by sleeping in and lazing in my concrete futon for the last time. It felt so luxurious not having to be in the PT room or anywhere at any specific time. Laurinda finished her packing and then completed her interviews with a lot of the patients. It should be a wonderful piece of work once shes edited it and put on the final touches.
Lots of goodbyes, hugs and even a few tears and it was off to the airport. How quickly a month has passed. Our Brits are flying home via Hong Kong too, so we shall spend the stop-over time with them. Our luggage was well over-weight and we havent had to pay for excess luggage but Roos gift was confiscated at Chinese customs. It had to be his gift...of course it did!
So, as we fly over the South China Sea with Laurinda snoozing beside me and the sun setting over Asia, I am smiling hugely. We did it!

Thurs 20 Nov

Theres only one thing more I would have liked to ask for (an MRI), but I already feel so blessed and lucky, I didnt want to be greedy. So I was amazed when Dr Apple came to ask me if I would like to have an MRI done this morning!! The Hospital had just acquired a brand new machine and I was literally the 2nd person in it. The packing boxes were still all over the floor and there were dozens of curious staff wanting to check out the exciting new machine and the funny blonde lady going into the tunnel. The whole thing was so unexpected and thrilling. I have no ida if 4 weeks of stem cell treatment will show on film, and I know even without visible evidence that there have been fantastic positive changes, but it would be the icing on the cake if these changes could be seen.
Mt last day of therapies with Owen whom I shall miss and definitely never forget, he has helped me so much to regain the trust in my legs that I havent had for a long time. I hope my thankyou present made him happy.
We also organised thankyou gifts for the medical staff and translators, they just give and give, great workers and such caring people. We fell a litte inlove with them all.
Another long and tiring day saw me being a bit of a party pooper when almost all the patients and families went out for dinner, but I really appreciated the quiet time and had so much to think about and I also wanted to say a massive thankyou to the Universe for fulfilling my dreams and bringing me thru this whole experience. Life is awesome!

More photos!

 

Birthday and recovery

Odette:

All glammed up for dinner and decided to read my B`day emails...dumb move!  Got all emotional and howled all my make-up off so still no nice photos of me I expect.

The Holiday Inn was very extravagant and the buffet dinner was so lavish. Yet another cake appeared, so of course it was only polite to sample that too!  I left literally groaning and bursting out of Laurinda's pants which DID fit me before we left lol.  It was so warm inside the hotel that it was easy to forget the sub zero temperature outside until it was time to leave and find a taxi home.  Unfortunately, the front doors of the hospital were locked when we arrived and we had to make our way around to the side door...quite a hike on a very full tummy and feeling absolutely frozen for the first time ever!  Well, the others walked, but guess who was running?  Me!!  I was running!!  Laurinda said to her friend Pam "My Mother has MS and she's leaving us for dead".

haha.  Another triumph in a  list of so many.

I was woken very early by the Vampire Nurse who took lots of blood to repeat all the tests (ECG too) that were done when I arrived.  Results should be in this afternoon.  They will be good, no, they will be great!

Laurinda is quite the social butterfly ( Oh I wonder where she got that from?) and has headed out for the day with a group of other carers.  They have ventured downtown (I always have to laugh when I say Downtown Quingdao, its as far from downtown as you can possibly imagine) again, yet more tattoos for some, shopping and sight-seeing for others.  I am hoping she doesn't return with any piercings or suspensions (for those who, like me til a couple of days ago, don't know, she described them to me in detail the other day....hooks inserted into the skin so you can literally hang!) Some people hang from the Himalayas and other amazing places.  Adrenalin is a very powerful thing, but not for me thanks.  I'm hoping her smallish and actually very pretty tattoo will suffice.  There's always hang gliding after all.

So, after a hot shower (yay!! hot water again!!) I am enjoying a few hours of rest and reflection between therapies.

What a journey.  What an adventure.  And I got to share it all with my beautiful daughter.  A lucky and happy lady indeed!

Thank you Universe.

Birthday

Odette:
Tuesday 17 November

It is my birthday today and I woke up feeling amazing and noticed a sparkle in my eyes before I even realised the day.  I asked Laurinda to take photos, hoping they would catch the moment but I guess once you hit 50, it takes a little more than a smile to look good!  Perhaps later we will glam up a bit and try again.
My morning therapies are over, waiting for a Doctors visit and then 3 free hours before afternoon rounds.

2 more full days and we head for home!!
I miss my Roo, I miss my pussies and I miss my Princess bed.  I miss Blisters night and I miss Facebook and my Fairyland friends and garden.

I do NOT miss the heatwave that Jarrod has informed us is waiting for us at home.  Yesterday our temperature in China was -5 low and 4 tops.  Of course it is the wind chill factor that you have to be prepared for, so we stick our arm out the window as far as it can reach to test it before we head outside all rugged up in our hats, jackets, scarves and my pièce de résistance....my Emma Peel gloves!  No doubt they will go in the dress up bag at home, but I'm enjoying the opportunity to wear them here.

More therapy and then a huge, beautiful birthday cake arrived.  We gathered round the communal area to share it with everyone.  Now we must wait an extra hour before leaving for my birthday dinner at the Holiday Inn so we can fit it in.

Reflections

Odette:
Monday.

Laying in my bed all hooked up and waiting to be wheeled upstairs for my very last stem cell treatment.  I've skimmed over our words of the last 4 weeks and relived some precious moments and some great laughs.  A month has zoomed by and I know Laurinda and I will take away some life-time memories with us.  I had never visited a Communist country before and didn't really know what to expect, but I admire the way the Government here ensures employment and at least the necessities of life for all.  We have not encountered any hungry or homeless.

The people of China have been absolutely lovely and gone out of their way to make us feel welcome and share a little of their culture with us.  They are so friendly and more than willing to try and converse with us or help us out.  Thats when they are not laughing at us of course...we are still cause for a lot of giggles and whispers.  The only tourists to be seen are here for the same reason...the stem cell treatment.  We have really enjoyed the locals and learning about their ways.  They are also very polite people and seem happy with their lives.

Despite the language barrier, the medical staff have made a huge effort to explain all the procedures, even showing me the vial of spinal fluid they remove from me before injecting the stem-cells so that the volume stays balanced.

Back from my Lumbar Puncture - the Director performed the procedure tonight and was extremely efficient.  The hardest part is the 6 hours flat on my back with poor Laurinda on potty duty.  So, all my beautiful new cells are inside me now and many are already doing their job.  Dr Apples examination yesterday confirmed the muscle strength in my legs is now.....wait for it...NORMAL!!  I also have muscles, 2 of them!  One in each shin.  Its been too long.  Laurinda is busy admiring her tattoo and I am busy checking my 2 muscles are not disappearing.  I am still working on ideas for home.  I need to take Owen to keep up my daily massages and therapy but he just laughed when I asked him.  I can't work out why!

Sunday

A quiet, snowy day in today. Mum's stem cells have been asking for lots of rest and relaxation. Even Superwoman needs to put her feet up. She has her final spinal injection of precious stem cells tomorrow night. Although we had some immediate results and her general condition has already improved, she still has the odd rough day. She is still smiling because she knows that there will be less of those days to come.

Taxis and Tattoos

Our last Saturday in China. Mum wanted a day of rest so after a lovely sleep in I went down town to Jimo Rd markets with Chris from Australia and Lu Lu from Peurto Rico. It was freezing!! Luckily inside the markets it was quite warm. The pressure was on to get the last of the shopping done and cross the final items off the list (not that there's any room left in our luggage). Feeling euphoric that it was almost over and I would almost have my children in my arms, the sun on my face, my own bed and hot water I was easily persuaded into getting a tattoo.

I know, insane. We stumbled onto Lianyuciqing a very handsome and famous tattoo artist. His work was quite exquisite (http://lianyuciqing70.51.com). So in a room no bigger than a telephone booth with a man that spoke no English, two of us got beautiful tattoos. For 100RMB ($16) I am a very happy lady. While mum has her Chinese stem cell which will always live on inside her, I can also take a precious symbol of my Chinese adventure with me wherever I go.

By the time we had sat for our tattoos and completed our shopping it was 5 pm. Oh oh, taxi shift change time. The three of us spent over an hour in the icy wind and darkness trying to hail a taxi. We were so grateful for the driver that eventually stopped that we could have kissed him. After having to stop for petrol and then swing by another driver's home so they could change shifts, we were finally on our way home. There were some anxious mothers and a very concerned wife waiting for us when we staggered in after 7pm. Not a good time to mention the tattoos.

Mum tucked in early and some of us went back to the Paradise Club. I was on my best behaviour of course after last weekends night of debauchery. We were entertained by some sort of Chinese Pantomime and a man with a whip who shredded a piece of newspaper. He followed that act by throwing meat cleavers at targets around a man's head and then blew nails out of a mouthpiece to pop balloons placed around the man's head.

Friday - Warm shower

The only exciting thing to write home about today is that we both received a hot (well warmish) shower. The hospital paid for a hotel room so we could go and enjoy that 'clean feeling'. The driver took us to the Holiday Inn and we were very excited drinking our honey pomelo tea waiting to check in. Our glasses were snatched off us and we were shoved out the door. Apparently the driver had taken us to the wrong hotel- we were supposed to be a the cheap garden hotel not the 5 star holiday inn. It was lovely to enjoy luxury even if it was only for 3 minutes. We were lucky enough to spot the pomelo tea at the Lottemart and have been enjoying it regularly.

No more sciatica

This morning is very auspicious. Mum has woken with no sciatica and we have both been able to flush the toilet and wash our hands. I've got a feeling that today's going to be a good day! Mum's therapy went well today with Owen focusing on massage. Unfortunately by late afternoon her blood pressure soared and we cancelled our plans to go down town to the UK stand up comedy event.  With mum in bed early, I headed out to dinner at the Holiday Inn with 19 other patients and family members. We had an amazing buffet. It was fantastic to enjoy some Western food with some Western company. It was heart warming to hear their stories. Many of them have fund raised for many months and some even years to receive their stem cell treatment. Lots of the families have just arrived and they are already talking about coming back next year for sure.

Woeful Wednesday

Odette:

Whoops off to a rough start today all round. Laurinda woke with the Flu (we're hoping it's not Swine) and then got caught in her nightie and had to ask the professor (a.k.a God) to wait a minute while she put something decent on. He wasn't amused.

It seems that is common to suffer from Sciatica pain after/between Lumbar Punctures. It happened a couple of weeks ago, but it wasn't too bad. This morning it started at about 6.00am and I was literally in tears of pain by about 7.00. It was excruciating. I was poked and prodded and questioned by all the staff including the professor. A pain plan was put together and administered. Chinese see pain medications very differently than we do in Western cultures, they would rather fix the source of the pain than administer strong pain medication. Considering I had already had Tramal and panadine forte and I was still dying I was happy to go along with any plan they had. I received electrowave therapy, IV form of anti-inflammatory and 1/2 a tablet of mild pain relief. They also told me to put a towel on my left bum but it is a bit hard with no hot water. It seemed like a lot of things happening at once, but they got it right and within 45 minutes the pain was gone. They sure know their stuff around here. We have been monitored quite closely today- any more pain and there would be NO stem cells tonight! Time is precious, our flights home are booked and we don't want any delays now. I really don't want IVs instead of Lumbar Punctures either, but with 2 hours to go things are looking good.

I got quite excited when another lady arrived with MS a few days ago. We had a big chat and she is in a very similar situation to myself regarding the progression of disease; limited mobility, cognitive difficulties - all the way down to our "Tourettes" as we call it. Unfortunately it has been too cold here to leave the room so I haven't been able to catch up with her and find out if the treatment has been as helpful for her. I hope so. There have been no other MS patients.

Thank the Lord that we both have a sense of humour. Today has pushed us in every way and we are still in good spirits. Once the pain was under control we realised it was to be another day without a hot shower (5 days now...) A solar system was installed a month ago without regard for the freezing Winter that kicked in about a week ago. We are almost at the pulling-out-our-hair stage. The bathroom door handle fell off, there is no heating or extra blankets for our concrete futons and our laptop died. Laurinda is becoming very angry at the poor man that never leaves the computer that has Skype on it, so she can have her daily dose of her babes. I am beginning to fear for both of them.

On no! Now there is not only no hot water- there is NO water at all! Help- send the helicopter for us. Please. They're coming to wheel me upstairs for my stem cells any minute and all I can hear are fireworks. What planet are we on? How can I be receiving cutting edge technology and there is NO hot water? How does the doctor scrub up with NO water? The Chinese honeymoon period is over! Well at least we're still laughing :)

Terrific Tuesday

Laurinda says:

We were confined to our room all day yesterday, so today despite the freezing weather conditions we decided to venture out to the open markets to save our sanity. Our only pair of jeans were away being laundered, so we had to wear our summery 3/4 length pants with socks pulled up and walking shoes (very sexy!). We walked out of the comfort of the heated hospital and the icy wind gnawed at our ankles. We jumped in a taxi and were dropped off at the dogs' heads.

First stop: gloves, beanie, leg warmers and tracksuit pants for Mum who was feeling the cold for the first time in years. Would you believe we had to buy size XXXL men's tracksuit pants and they are skin tight on her! Advice to anyone coming over, don't pack 11 skirts and think you'll buy some jeans over here when it gets cold if you are over a size 12 AUS. Next stop, Beth's Louis Vuitton bag, hmmm not sure if it's quite her style but fingers crossed. Then a couple of outfits for the girls and a pack of 10 Nike socks for less than $1.

Odette says: 

We rushed back to the hospital in time for the second round of PT and electrowave therapy. Today the muscles are still tired and sore from 4 hours of walking on Sunday, the MS equivalent of running a 10km marathon. Big rest in the afternoon while Laurinda popped over to Lottemart for a few essentials. She came back with 'Annie' a beautiful doll who speaks Chinese. The young Chinese girls at the hospital were very taken with her and loved conversing with her and kissing her.

We have celebrated other patients success along with our own. Here are a few of their stories (names omitted for privacy):

• A little Norwegian girls first steps today. Her dad is over the moon. His dream of having his daughter walk into kindergarten with her friends next year is coming true.
• Our mate Kev smelled coffee and saw shadows directly in front of him for the first time in 12 years.
• An American girl left last week able to put her hands out and touch a wall instead of crashing into it as her undeveloped optic nerves began to grow.
• A little Irish boy has stopped having seizures and his parents are very hopeful for even more positive results.
• An elderly Chinese lady is seeing light after years of darkness. She was complaining the lights were too bright following her first treatment.

These results are very exciting however, we know that stem cells need to grow and multiply and the best results are still to come in the 6-12 months after we all leave here.

 

 

Monday 9 November

Odette says...

Its NOT because I'm stubborn!
Its NOT because I'm too independent!
Its NOT because I wont listen to Laurinda!
Its NOT because I think I'm Superwoman !

Well, ok, it might be a bit of the above, and yes I am paying the price today and only managing to drag myself out of bed for therapy, and yes, I overdid it again big time...but what an achievement!
Yesterday we walked and walked and walked.  Up hills, down hills, up hundreds of steps and over very uneven surfaces all day without a single tablet or whinge.  Our only rest was the chairlift that took us up to the Temple on the Mountain, despite having to line our bums up and hope we made it on as it whizzed by..the damned thing doesnt stop!  There was a bit of a lurch as we more or less fell into it, and off we went amongst much slightly hysterical laughter.  The Zoo was huge and rather sad so I was delighted to arrive at the Buddhist Temple which was surrounded by a pretty lake with ducks and geese.  We saw the Monks chanting and going about their daily business in this idyllic paradise, but it wasnt long before we were nudged back to th 21st Century by the sight of a Monk on his mobile phone.  The day was terribly smoggy but we managed to get some lovely photos and the Temple soothed me spiritually and the pride I felt when Laurinda mentioned how long we had been walking....another day to remember with a smile!

I have felt from the start of this adventure that I need to get the word out...make more people aware of the possible wonders of stem cells, and ideally, even help to make it possible for those that can't afford it.  Its very expensive and without my superannuation, I would not have been able to experience it myself.  Laurinda and I are working on ideas, nothing decided yet, but perhaps something along the lines of a charity based organisation.  There are others here too that are eager to share their successes and we are going to film some footage of real people telling their real stories.

2 treatments to go...Wednesday night and then final one on the following Monday and head for home next Friday.  :)

More photos ... the zoo and the temple

 

 

 

 

 

Saturday 7 November

Its very difficult to know what's been posted on our blog when we can't see it ourselves, or which photos Jarrod has chosen to display, but everyone seems to want news, so here goes....

CONFIRMED MEDICAL RESULTS

• Muscle strength in legs.....almost normal!
• Muscle tone in legs............almost normal!
• Tingling (pins and needles and elec shocks) in legs...all gone!
• Blood Pressure....lowest in 7 years!
• Neuro reflexes...almost normal.
• Cholestorol....on target.
• Eye-sight ....improving.
• Pain relief.... reduced.
• Anti-depressant meds...reduced.
• Walking for miles!
• Weight...stable (ggrrrr)

I had my 4th treatment last night - 2 more to go.  I have organised the last one to be L/Puncture rather than IV.  No problems there.
I cant speak for everyone else, but this is the stuff of dreams and miracles for me.  Now I'm going to plan a whole new life for when I get home.  My new Nikes are getting a work out and I am loving being outdoors again after all this year on my butt in front of my computer or in bed.
I'm going to live again!

...


Laurinda was going a bit stir crazy with cabin fever, so I encouraged her to round up a few patients and carers last night and head out to the Paradise Club.  It was good to see her get dressed up and excited.  She must have had a good time because she was the last one home and was locked out of the hospital LOL.  Being a resourceful girl, she somehow found a way in and to her bed.  She and a few others have organised a couple of cars to take them to the downtown Markets today.  Because I had 2 treatments this week, I had to miss a little therapy, so I stayed in today to catch up.  A nice rest too, so my stem cells can do their thing, and a quick nip over the road for a few treats before she returns.  I have no idea how I'm going to cope without Owens massages each day once I'm home.  I may have to bring a Chinese boy back with me!  Ok, just enough time to sample a few snacks before electric wave therapy.

Here's a few more photos:

 

Underwater World.... Qingdao

 

 

Some more photos from Qingdao

 

 

Tuesday 3 November

Odette says...

I couldn't be happier if I tried.  My Lumbar Puncture went well last night and I am noticing more and more symptoms disappearing.  Today I realised that my legs and feet were NO longer tingling with pins and needles and electric shocks, this after 7 years!  I also have not had one serious meltdown, my eye-sight is improving and I walk like a normal person. I am not needing as much pain relief.  The list gets longer each day.

In-between therapies we headed out and spent a couple of hours walking around the markets buying some suitable snow-shoes (LOL) and then back for the last of the days therapies.  We got some footage today of Dr Apple, Owen, a translator and myself conversing when some of the realisations (like the legs/feet not on fire) hit.  Very exciting.  The Professor visits tomorrow and we shall film that too, although it will be in Chinese, we should have a translator there. I have requested that my final treatment be a Lumbar Puncture instead of IV, and there seems to be no problems with that.   My Miracle Journey is everything and more I hoped for, even at only halfway through the treatment.  Thankyou Universe!

Monday 2 November

Odette says..
The day dawned clear with blue sky and fluffy white clouds.  The mountains could be seen clearly. What was happening?  The rumour hit us in room 3...it was snowing!!  We raced to the window, being 8 floors up and totally unused to snow, we weren't quite sure where to look.  I think we were expecting white piles on the ground, but then we saw it!  Beautiful snowflakes flurrying in the breeze.  The first snowfall of the year and we think it means good luck.  We dressed and headed out into it.  We have been very insulated in the hospital and were definitely not prepared for the zero degree temperature outside but it was sheer loveliness.  So pretty and so special for us, we have never been snowed on.  Our photos didn't do it justice really, but we are hoping for more opportunities over the next few weeks.

We have had a nice day, picked up some souvineers and I made it hours past pill time again.  Dr Apple is as happy as I am with my results so far.  I breezed through therapy and am now resting before my next stem cell treatment in a couple of hours.  The Gods are certainly smiling on us. :)

Sunday Adventure

Odette:

A lazy start to the day. One look out our window revealed the clearest day so far. We could even make out the mountains, which are usually hidden behind a blanket of smog. We made some tentative plans for the day, grabbed our boys and headed towards town. First stop May 4th Square. This monument remembers the day that all the students in Qingdao fought the Japanese to reclaim their city, and won. We enjoyed the seaside markets and purchased some souvenirs. Our haggling created audiences wherever we went - we are quite the pros now. I do not want to think of the lunch we ordered ever again.

Next we headed to Polar Ocean World. We loved it and it was so nice to escape the weather indoors. We were lucky enough to see dolphins, belugas, penguins, polar bears, turtles and my favourites the otters all up very close. We were smoochd by sea-lions and we bottle-fed Japanese Carp. Home again in the taxi and very pleased for our slippers and cardys and $3 dinner. We left at 9.30am and returned about 6 hours later. We were on our feet almost all of the time and I'm still standing. I'm so happy with the way my legs worked all day with no pain- amazing! Next stem cells tomorrow night, which will take me to half way through my treatment. I'm a very happy lady.

Saturday Market Day

Odette:
A day to remember.

We teamed up with our Brits (Pete and Kev) and took a taxi to the outdoor markets. We were asked several times if we sure we wanted to visit these markets and warned that wee may see things we might find offensive. Oh no! We can handle anything we said! We jumped out of the taxi straight into a blast of freezing air, a howling gale and smells we never want to remember. The weather got more and more furious and there wasn't really anywhere to shelter in our summer skirts so we continued to slosh through the running sewerage in our thongs.

After rows and rows of stalls selling the same jeans and Nikes for $5 we finally found cover at the meat and seafood area. There were all sorts of shellfish and other delicacies such as bolied dog's heads (teeth intact), live chickens, doves and worms and every part of every animal we could dream up. No waste here! Pete shocked us all by sampling a morsel of dogs head which he immediately spat out. Our concern is the 'chicken' we have been eating closely resembles the colour and texture of the dog. Mmmmm. After a hot shower and decontamination, Laurinda went to lunch with the boys and saw a martial arts presentation - while I rested. Quiet night in watching a movie. Still finalising plans for tomorrow.

Friday 30 October

Odette says...

2 steps forward and one back.

I felt so good yesterday that I overdid it with an evening stroll.  I certainly paid for it today, but Owen gave me extra massage time and Laurinda bought me treats...yum!

It was a beautiful night and we are surrounded by parks all lit up, and with the locals playing badminton and other sports on the concrete...not the grass.  We took lots of photos, but they turned out a little blurry, still working out the camera.  We had a good laugh when we bought that camera at one of the features on it...beauty enhancer...but when I saw the photos Laurinda had taken of me, I had to tell her off for not using the special beauty enhancer feature.

So, a quiet day for me and a couple of jaunts for Laurinda and Ann.  Laurinda is now the proud owner of long, glittery gold finger nails - really not her style but she said they were the tamest ones there!  We also have a few other plans in the pipe lines.  Special back/neck/head massages, some reflexology and a tour of the local brewery where beer is drunk from a bag!  We are also hoping to see Polar Bears, temples, gardens and Olympic Games venues.  We have invited some friends to join us and we will take a van and an English speaking driver.  We have decided to leave the big walking outings until last of all, when I'm back in my Superwoman outfit.

My Roo rang me today..yay!!  We have a phone in our room and it was the first time I had heard it ring, it gave me quite a shock!  It was so nice to hear his voice.

It's Halloween tomorrow and Jack (one of the translators) has asked us to join him on the Trick or Treat rounds.  Luckily we came prepared and have some hilarious glasses to wear.

Can't believe we have been here for over a week.  Can't believe how much stronger I feel and how happy I'm feeling half way across the world from home with my beautiful daughter and experimental medicine.  The stem cells are not the usual ones used from the cord blood, but taken from the wall of the umbilical cord, so it really is new.  These cells are more expensive because they are proving to be more effective for some ailments and injuries, including  MS.  Luckily, being a Guinea Pig means I am only paying the usual price.

We are off to try the DVD player again.  No TV or movies since we were on the plane...big night LOL!!

Odette at the People's Square

 Hackysack

Bad smog today! Compare with photo of the Lottemart below, taken last week! 

Laurinda is very happy with the new nails

Thursday 29 October (week 2)

Odette says...   Move over Superwoman...Here I come!

After a long, lousy night and no sleep and babies crying, I was a bit wary of therapy this morning.  Owen knew I had my spinal last night, so his massaging was a little easier than normal, or so it seemed, and then when it was time for climbing, balancing etc...I was flying!!  I've come a long way in a week and I know the magic potion is doing its sweet thing.  After PT as I am laying on my bed waiting for my acupuncture, I can feel it.  I know I am stronger. My Miracle is unfolding.  I am blessed and it just keeps getting better!  I have also lost a couple of kg s, so by the end of treatment I will be wearing Superwoman's outfit with high heels for dancing and romance.Woohoo!  Alyson....leave a pair of high strappy black shoes for me in the Prada shop!
...
Right,  Dr Apple has been and done a quick neurological test and is very impressed with my balance and strength.

Thanks so much for your comments, with communications being so unreliable, its lovely to hear from you.  Jan, DW and Mihela...please pass on my love to all the F`s and big thanks for the support.
Blisters...No 3cent dumplings for you!
Al....please keep sending me emails, they make my day.
Hamo...dont smash Lady Jas`s car.
Christine....thanks for your support too and yes that step is high and the beds are thin!
Roo....I am your Mother, let me hear from you!
Anyone else...please dont hesitate to say hello, we have no mobiles here so we love hearing from you.


Laurinda says....

It was exciting watching Mum do PT this morning.  Owen had her balancing on one leg!  She lasted 2 seconds on her left and 7 on her right! He also had her powering up and down the high step like an aerobics class.  Definitely an improvement in balance and strength and confidence.  After therapy today we walked over to the shopping mall and spent about an hour browsing and she didn't need to stop and sit down once.  We had an enormous Korean lunch (enough for about 6 people, so no dinner tonight!!) all for $11. Now she wont let me film therapy this afternoon because shes too worried about her full belly wobbling.

First Lumbar Puncture Stem Cells

Odette: Ooh the pressure is building- it's really the BIG day today! Stem cells via lumbar puncture. Two therapies this morning, now no more for the day so I am rested up and strong for tonight 7.30pm. The Professor came from down town Qingdao this morning and poked and prodded and discussed my case with 10 others. The translator was here but I got the general gist of things. He was much revered and they all hung off his every word. He will be returning daily to monitor my progress. I think the IV that I had was more to see if I had any side effects or negative reactions of any kind. The spinal injections are the REAL ones! I'm very excited and busy telling my mind where I want the cells to go and what they need to do. Fingers, toes, eyes and wings crossed!!

After the cell transplantation. its laying down with no head movement for 6 hours. Oh God! How am I going to make it through the day? I'm already counting the minutes. I doubt this sort of excitement is good for my blood pressure. Here is the Professor's advice:
1. Take a little exercise everyday
2. Enjoy a little rice everyday
3. Smile everyday
4. Bask in the sunshine
Sounds good to me- although the sun is a little hard to detect past the white smog.

Laurinda has gone shopping with Ann. I'm far too worked up to read or try the Internet so I shall just keep trotting up and down corridors. Ok - no more writing they have put in my IV in preparation and Laurinda is back with slippers and nail polish- I can have nice nails again yay!
...

Laurinda: The day has gone so slowly but it is 7.15pm and they have finally come to take mum upstairs for her lumbar puncture. She is so excited. Now I don't know what to do with myself. Perhaps I should do some housekeeping our room is looking a little crazy.
...
Well I didn't get much done, mum was returned safe and sound 40 minutes later. She is awake and smiling from ear to ear. She said they only took two minutes to find the right spot and inject the cells. When the doctor started pulling her shirt down she panicked and said 'what's wrong' but he said 'all finshed'. She didn't feel a thing- a very different experience from her lumbar puncture in Australia! Poor thing is laid up now flat on her back and I was so excited to tell her I found a DVD that would play for her to pass the time- Charlie's Angels but it's in bloody Chinese with Korean subtitles! Oh well we wait with bated breath for tomorrow.........

Week 2 - Monday and Tuesday

This morning while mum was receiving therapy, I went to the RT Mart to buy DVDs and camera still no DVDs to be found but I managed to find a camera for $120 so I said I wanted to buy the camera and she told me 'no, none'. Through very broken Chinese and a little help from my phrase book I worked out there were more coming today and she told me in English 'just minute' so I wait and wait and wait. She looks at me funny and I ask 'when?' she rambles in Chinese and I pull out my book to the days of the week and she points to Monday so I ask 'oh delivery today?' She nods. I say 'what time?' and she tells me '4 o 'clock'. Lucky I have learnt some Chinese and had my book with me or I would have waited all day for 'just a minute' haha... so I walk the forty minutes home with nothing but some large blisters. I got back and mum said 'Hey! Where's my lunch? I didn't order lunch because I thought you were bringing me something yummy home!'

So we went to the Lottemart food court for dumplings and a stir fry thing with all the pickled vege and gim chee trimmings. It was very yummy and everyone thought we were very funny trying to order in Chinese. After you order you take your ticket over to central food court cash register area, pay then come back with ticket and wait- didn't take long. I walked off to get mum a drink and it was on the table with her when I returned. When we went to leave we saw the cheap cameras for sale in the food court! So we finally got a camera for $100 and paid extra $20 for a 2GB card and it saves me from walking all the way back to RT Mart tomorrow. So we can now post some photos!

Out the front of the hospital there are street vendors selling lunch but we just haven't been that adventurous yet! It is a strange melting pot of East meets West. We are very excited about mum's first lumbar puncture delivery of stem cells tomorrow. They joke here that it is like taking the lift straight to the penthouse to fix the myelin where it's needed rather than taking the stairs and stopping on each floor.

 

Downtown Qingdao Sunday...

This morning we told the nurses we wanted to venture out to the city and they laughed at us.  They said today is not a good day to leave the hospital.  Apparently today is very auspicious and there are many weddings on.  They explained that it would be very hard to get a taxi because they dont like to take tourists and there would be too much traffic because of all the weddings.  All the fireworks we have been hearing for the last few days were nothing compared to today and they explained the fireworks were for the weddings.  Many, many weddings!  We decided to take a cab downtown anyway and it took about an hour.  We went with Kev and Pete from the UK.  It did take awhile for us to find a driver that would take us and we negotiated the price...100 RMB (about $16).

Well, it was a wild and crazy drive there with no traffic signs, lights or obvious rules, infact our driver spent most of the time driving on the white line rather than in a lane.  There is no indicating, just honk the horn and go for it.  We nearly  drove into the side of a bus or tram a few times.  The route there was thru the shipping port and there was construction everywhere, mostly just piles of rubble to be seen.  We arrived at the outdoor markets, but every store was selling the same thing...stone statues and coffee tables.  We found our way into the indoor markets and thru a maze of shanty stalls.  My broken Chinese for "I want to buy a dvd, where are they?" was met with many laughs and "No dvd here" and my Chinese for "Where is the toilet?" was also met with giggles and "No toilet nearby".  Eventually we did find a toilet and had to pay 2 RMB each to use it (an experience!) but we were not so lucky with the elusive dvds.  We wandered the markets buying a few gifts to bring home and even haggled with the calculator.  We enjoyed a very interesting lunch and custard tarts for dessert.  We still attracted a lot of attention but mostly because of Mums blonde hair and Kevs cane.  The taxi ride home was much more scenic and a lot cheaper at 66RMB, which explains why all the other taxi drivers in the line laughed at us this morning when we agreed to pay 100.  We all thought that the trip was easier with the 4 of us, so we may venture out together regularly.

In the afternoon we went over the road to Lottemart to buy a camera but at over $200 for a 3 megapixel camera we decided to give it a miss.  We are hoping to get our hands on one soon to start posting some pics with our blogs.  We walked around the Lottemart and Mums legs held out really well even after a morning at the markets.  Things are looking good.  We were told today about a little blind girl that left a few days before we arrived...she had 6 IV injections of stem cells and left here being able to read the 5th line down on the eye chart!!  So much hope here!  We are quite tired now and glad to be starting therapy again tomorrow.

 

Hospital photos

Here are some photos from the hospital...

 

Odette's First Trip Out

My first trip out of the hospital today was rather eventful even if it only entailed crossing the road. The traffic is all on the opposite side of the road and drivers honk and speed up to get you moving faster. The relief making it across one road, was funny. The shopping centre was huge- the choices are endless and mostly written in Chinese. We made a few purchases including our 3 cent dumplings which tasted great! Everything is so cheap, but unfortunately my test results have come back and my cholesterol level is high. Laurinda has now taken the role Food Nazi and watches every morsel I eat. Oh no! She wouldn't let me buy the yummy sweets and fried omelettes. We returned and needed a rest but I am extremely happy at how my legs are performing.

So we are now feeling quite organised and stocked up on toilet paper that has no hole in the middle, strange drinks that we are not sure of until we taste them, some fresh fruit and greens and some frozen dumplings for when we feel ready to brave the communal kitchen. It is too easy to order in- the food is mostly great and so cheap. The laundry was collected this morning and returned freshly clean in two days. Our room is cleaned daily and we are quickly becoming bums forgetting what housework is and enjoying much resting and reading time.

Everyday we hear a huge firework show and we have an enormous view from our window, but still have no idea where or why the crackers go off. The cops can be seen in their little golf buggy with flashing lights on the roof patrolling the car park. There is no TV in English so our view provides a lot of entertainment. At night the neon lights of the shopping centre change colours and it is all quite spectacular. So far from home but we feel so comfortable and welcome here despite the stares and giggles from the natives.

We are planning a sight-seeing adventure tomorrow (Sunday) and on Monday all my therapies commence for the week. Next magic potion by lumbar puncture on Wednesday. Yippee! Loving it here and my sweet (Nazi) daughter for being so conscientious and looking out for me.

- Love from Odette

Therapy begins

It was lovely to sleep with the extra padding last night. Mum had her first PT session this morning with Owen and she feels great. She did stuff she didn't know she could even do. She stood on a balance board throwing and catching balls, walked with weights on her ankles and climbed a huge step 25 times! She received a lovely foot and leg massage too.

Then the Doctors visited again to explain test results. Blood pressure too high, cholesterol too high and optic nerve damage in left eye (mum wants me to write 'nothing too serious' here) but I have now become the smoking/eating police and she's not impressed.

Next was acupuncture where mum lay around for half an hour with needles sticking or her hands, legs and feet. Then the wait.......

3.00pm.....time for her first stem cell injection. Mum says 'let the miracle begin!' She was feeling very emotional at the start after months of planning and hoping, here she was receiving her precious cells. I taped some of the special event but mum was crying too many tears of joy to talk. Mum says she 'feels great, not superwoman yet, but on her way'. She has been resting this evening so she can venture out with me tomorrow. There is no therapy on weekends so we are hoping to do a spot of sight seeing.

Lottemart

The cement futons lived up to their name and the ambulances pulled up all night. Needless to say there was very little sleep all round. We made friends with Ann and Dennis (from New Zealand) this morning and Ann and I braved the LotteMart. It was huge. We were the freaky foreigners that everyone wanted to come and look at and giggle with their friends (especially if we greeted them with 'nihao'). But it was fun. Everything was so cheap (except the milk at $6 a litre) and I managed to collect everything on mum's comprehensive list including extra padding for her mattress. You can buy ANYTHING at Lottemart from weight benches to live fish for dinner.

Mum underwent a series of tests for the remainder of the day. She was prodded and poked and x-rayed from top to bottom. They were very thorough. The translators make sure we understand everything. The doctors have given mum her therapy schedule (which will consist of physical therapy, acupuncture and electric therapy daily )and her stem cell treatment schedule which starts tomorrow! We can't wait.

Arrival in Qingdao

Sorry about the delay for our next post, we have had many difficulties accessing the Internet in China and due to government restrictions we have not had access to our blog (or any other websites). However we have found away to keep you updated :)

We landed in Qingdao (pronounced Chin Dow) and after a minor hiccup at customs where they looked like they weren't going to let mum in, we had our passports stamped and made our way to baggage collection. We were very surprised to find our luggage had actually made all the connecting flights and arrived safely with us. As we pushed our trolley (groaning with all the Paris Hilton luggage) out the gates we looked out into the sea of similar faces, many holding signs in Chinese, desperately looking for our names. Someone shouted 'Odette' and we were both overcome with relief. A friendly guy walked up and introduced himself as 'Michael 'our translator. He pushed our trolley to the van and introduced us to 'Cliff' the driver and 'Lucy” another translator.

The drive to the hospital was short. Chengyang is a relatively new district and everything has just been built or is currently under construction. It is very clean and the streets are lined with perfectly manicured weeping willows and firs, just beautiful. There are gardens everywhere and gentle music coming from, well I'm not even sure where. I couldn't think of a more beautiful or relaxing place to stay (if you have to be in hospital).

We were taken to the 8th floor and found “Odette van Straalen” and the Australian flag on the door to room 3. This is home for us for the next 5 weeks. It's not bad at all, flushing toilet (unlike the airport) shower, water cooler, fridge and microwave, couch and a cement futon each. We are able to access the Internet from our room but due to censorship we can't actually use it. Fortunately it does allow us to access emails sometimes and use Skype to contact loved ones back home (miss you my beautiful babies).

There are many other foreigners here receiving stem cells from all over the world including fellow aussies and kiwis. Many of the patients are children. Everyone is very friendly. The staff are extremely friendly and try so hard to speak English. There is a shared kitchen, dining and lounge area. Across the road is a brand new shopping complex (two or three times the size of anywhere we're used to shopping) and at night it's lit up like a Christmas tree. They have a wedding shop directly across from our window and it has huge speakers out the front that scream Whitney Houston all day.

We were given a Chinese and a Pizza menu and asked to order dinner. We ordered calamari, sweetcorn with pine nuts and spring rolls. They were delivered to our door for the small sum of $8. I opened the spring rolls expecting 4 and there were about 50 of them! Very cheap, very yummy, very easy. Not sure how well we're going to sleep on these cement futons but we're pretty stuffed!

Landed in Hong Kong

We have landed in Hong Kong and we are waiting for our last flight to Qingdao. The flights have been smooth and the food has been great. We even had an opportunity to have a tiny sleep and some starbucks :) We have successfully navigated airports, purchased drinks, changed money and made all our flights- we're doing well! We can't wait to hit our concrete foutons.

One sleep to go....

Thank you all for your beautiful comments, emails and well wishes they have been overwhelming. Mum and I are packed and ready to give this everything we've got.

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Next time you hear from us, we will be in Qingdao!


Laurinda xx

Hi

Hi, my name is Odette, I have Multiple Sclerosis and I am 49 years old. Until 7 or 8 years ago, I was a very healthy and active person. I loved working, socialising and even bush walking. When I turned 40 I began to notice some strange things happening to me, but put them all down to being the big 40! It didnt take long before I noticed symptoms that were no longer able to be pushed aside. The first was pins and needles that started in my feet and quickly progressed to mid thigh. I visited my Doctor and he basically ordered me to see a Specialist fast. I did so. The Spec sent me for X-rays which looked fine and a Lumbar Puncture which was the beginning of the end really. Within 2 days I had a very severe MS attack and was admitted to hospital where I underwent my first MRI. It showed many, many years worth of myelin damage around my brain and a few down my spine as well. New symptoms appeared at quite an alarming rate. After my second clinical relapse I was put on Beta Interferons, which I didnt feel helped me much if at all. A couple of years passed with my MS slowly progressing. I visited a new Specialist who changed my medication to Copaxone which is self-injected daily. I had a huge and immediate improvement! I was able to work again! I was still suffering from typical MS symptoms but they were quite bearable. Two years later I felt my disease progressing faster and faster. I was unable to continue working again. I had and still suffer from terrible cognitive problems, no control over my body temp which causes overheating and loss of energy, weakness and severe pain in my legs, lack of balance, nerve fatigue, loss of hearing, taste and smell. Some days I walk and some days I do not. I have very little short-term memory, loud noises and explosions in my head, I can no longer move my toes and lately my arms and fingers are becoming weak and very un-coordinated too. My emotions are very fragile. I cannot be among crowds any longer and if I am able to drive, I travel very short distances and cannot stay away from my home for very long. There are many more symptoms I suffer from, but I think that will do for now lol.
I began researching Stem Cell therapy. I feel it is the only hope I have left available to me that will offer me any quality of life. Im just not ready to lay down and die yet. I also hate feeling like the alien which the MS has caused. Even if I had the words to describe this feeling, I doubt anyone other than a fellow sufferer would understand. I have a wonderful family who are very supportive and caring. Laurinda is accompanying me to China, she will be my Carer so to speak and for this, I will be forever grateful. My son Roo helps me out a lot too at home or driving me places. My older sister has also been a Godsend to me, despite having her own medical issues and my friend Hamish who has always been there for me.
I am not nervous or scared about this futuristic medical therapy I am going to receive. I am excited and hopeful and positive. I am going to get my life back!

Count Down to China

Organising passports, visas, practising Mandarin, packing..... two weeks and we will be landing in Qingdao.

This is a story of hope.