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.

Just some navigation tips for those of you who have asked;

How do I follow?

If you would like to follow the post click on the follow button on the right hand side under the 'Followers' heading. If you have a Yahoo or Google account you can sign in with this account and follow OR if not, click on 'don't have any of these?- create a new google account' and set up an account and follow. Alternatively, just bookmark the page if you like.

How do I comment on a post?

Simply scroll down to the bottom of the post you would like to comment on and click on comments, it will redirect you to the page of comments, scroll to the bottom of them and you will see a box you can type your comment in and then click on 'post comment'.

Hope this helps

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.