Posts filed under 'Uncategorized'
Hi all,
Well, we’ve been home about a week and a half now and its taken time to settle down especially because of the snow we’ve had! On top of that Christmas is only 2 days away.
So, this is to wish you all a VERY MERRY CHRISTMAS and love, luck and hope for the NEW YEAR, and this goes especially to all the wonderful families we met in Qingdao hospital and to all those families remaining there throughout the season, you know who you are:) Hang in there guys, and we miss you and think of you all the time <3
Amy is back to her normal self. Happy to be home where she receives constant baths, food and our attention, lol. No improvements to report, yet…but we still remain hopeful.
We are over the moon to hear of other childrens progress though and hope this continues to be a good sign for their futures. Keep the dream <3
Ho, Ho, Ho and will continue to update as and when.
Love Amy Hana <3 & Family xXxXx
December 23rd, 2009
So, we’ve reached the end of our journey here in China after 5 weeks and 8 treatments and its been one hell of a ride full of ups and downs and tears and laughter.
We’ve met so many fantastic families and made lots of new friends from across the world who wish the very best for the future too. They, as we have, have made this journey of hope for their children. We’ll be keeping all our fingers and toes crossed that they forfil their hopes and dreams.
Amy received her last SCT yesterday which was awful once again. I have to admit i am feeling sad that she has shown no improvement in any aspect of her conditions. I just hope, oops there’s that word again, that time will tell.
She really has had enough and, like Chris and I, can’t wait to touchdown on English soil. There really is no place like home, though i’m sure i’ll be taking that back soon enough one the routine of life starts again! lol!
Chris is at the Jimo market with all whole bunch of people today so the ward is pretty quiet. I’ve finished packing and all thats left to do is enjoy an Italian meal in the communial area with the guys we’re saying bye to. We’re looking forward to this as i’m sure there’ll be a few beverages and laughs had by all.
I promise to update the blog if we do see any signs of improvement in Amy Hana.
Lotsa love and ‘hway toe jian’ – See you later! xXxXx <3 <3 <3
December 12th, 2009
Hey all 
Hope your all well???
So, we have less than 3 days to go! 2.50pm Sunday and lift off! …home, here we come 
<3 <3 <3 I’ve even started PACKING!!! Lol. Although because it is only 3 days its feels like the time is passing VERY sloooowly….
1 more treatment for Pickle tomorrow (Friday) at 3pm. Amy has been a brave monkey again today. She had to go for a ultrascan on her liver this morning as her bloods have shown she has a high function the last few weeks. Of course, having to hold her down, she thought it meant another needle in the arm or hand and totally freaked. Poor thing 
The scan showed that her liver is normal size but that her gallbladder is smaller than normal which means we must be observant incase of stomach cramps etc. All of this we are going to check with Gt Ormond Street on our return.
On another note…more families are arriving all the time. Conditions are so variable and so are the results. I’m afraid there still is no change to report for Amy Hana. We still have hope as it can take a while for the stemcells to mature. But if nothing happens…we know we tried, right <3
We’re the only English family here now! Lol! We’re missing our partners in crime…Hayley, Keith n Keiran LOTS!
Lotsa love n luck to all and we will blog again on our last day! xXxXxXx
YIPPEEEE!!! WOOOOOOHOOOOOO!!! Oops Sorry!!! LOL xXx
December 10th, 2009
Treatment #7. This one was a little more stressful for Amy yesterday. We looked for a workable vein on Amys left arm and applied Emla cream to the area the nurses indicated, but when it came to finding a vein with the canula no success, so we moved to the right arm which had no cream on it, (lesson learnt put cream on both arms regardless) so Amy felt the needle go in and she was alot more upset than the last 2 treatments, but once again 20 mins later the process was completed and normal service was resumed. It is still amazing just how strong and resiliant that she is. We are so so proud of her. Only 1 more treatment to go on Friday.
We now have 3 days of accupressure treatment with Doctor Jasmine before the last Stem Cell treatment. Michelle is going to take the opportunity to do a little last minute shopping.
6 DAYS TO GO: We are now the residents who have been here on the ward the longest, as today Keiran, Hayley and Keith from Gillingham UK left to go home. Good luck guys and we will see you all soon. It was an absolute pleasure to have spent the last 30 days with them sharing our China experience. We had a lovely day out together on Sunday in down town Qingdao visiting Underwater World and May 4th square (named after a nationwide protest day) at Fushan Bay where the Olympic Sailing took place. A really lovely place. We have still not quite got used to Amy being stared at all the time. We are not sure whether it is because she is in a wheelchair or the colour of her hair but after an hour of Chinese people staring at her it became really bloody annoying and Michelle and I became quite defensive of our pickle using some classic English phrases to express our displeasure. Michelle even started to stand in front of Amy and wiggle her butt at them. It made us laugh. You have to try and keep your sense of humour out here….anyway peeps we will sign off now and see you all very soon.
December 8th, 2009
Hey all, Where you all gone??? lol…
Free day today and tomorrow. Only 8 days to go!!! Unbelievable
Dinner at the Holiday Inn last night was accompanied by 20 Chinese carol singers singing Dingle Bells (That is not a spelling mistake. That was what they were singing. Sounded nice, dingle bells, dingle bells, dingle all the way..LOL).
Going to Qingdao Bay and Underwater World tomorrow with Keiran, Hayley & Keith so looking forward to that! Then off they go..leaving early morning on Tuesday. Gonna miss them loads as they’ve kept us sane and are an excellent family. Keirans an absloute diamond! We’re so happy for Keirans good news and love them lots! We’ll be chasing their heels though and will definately stay in touch n meet up as they’re only in Kent
Treatment No. 7 on Monday…fingers crossed that Amy does aswell as she did yesterday (Fri) She’s our lil star i’m telling you <3 <3 <3
Ttfn xXxXx
December 5th, 2009
Wow, that was amazingly easy(ish) as it only took 2/3 people to hold Amy steady. The Christmas songs were very successful in taking her mind off the procedure (‘when santa got stuck up the chimney-achoo achoo achoo!) plus a few raisins which i circled around her mouth like ya do a baby with a dummy…the nurses found this extremely amusing!
9 days to go! Can ya tell we’re counting the days? Can’t wait to see you all xxx
December 5th, 2009
Well we are now over half way through the treatments with the 5th set having been given this afternoon. I only wish we had gone with no sedation from the very beginning it was so much easier. Nurse Linda found the vein first time and even though Amy let us all know she was not too happy she still managed to give the nurses a rendition of her animal noises. We had old faithful on in the background (Peppa) and Amy was very scarey with her dinosaur roar, which had the nurses laughing. Amy gave Daddy a couple of digs to the ribs and Mummy a bite to her finger but all in all a very successful treatment. As soon as the Stem Cells and flush were in we removed the Canula and got a plaster in situ. Amy then had a 5 minute moan about the whole thing and ripped the plaster off, but the bleeding had stopped. We then then gave her a banana milk and fruit pastel and normal service was resumed. The next one is on Friday. #6.
Other news for the day was that we had another 2 families leave this morning. Spencer from Canada with Mum Brandy and Dad Chad- A very very lovely family:) and cool Lulu and her mum Mildred from Puerto Rico (thanks for the soft matress guys!!! Ahhhh). We had a bit of a going away drink for them last night. Much alcohol and cake was consumed. Headaches all round this morning and a few watery eyes as these guys are gonna be missed lots!
And Cassy, Pamela n Hannah arrived today:) Cassie is a 17yr old who Amy is quite similar to. We’re really happy to meet them at last <3 I even got a kiss from Cassy! http://www.cassysmiracle.com/web/do/site/home?ID=410847
Also, I have had a bad knee for some years now and Michelle asked Amys physio Jasmine if she could do some accupuncture for me. At 4 oclock this afternoon she brought an electric wave machine in our room and gave me 20 minutes electric wave therapy, then she placed 4 needles in my right leg in various positions below the knee. Now I was expecting this to hurt, but I can honestly say they did not. She then took both my hands and manipulated my thumbs asking me if either hurt when she applied pressure. The left hand did hurt so she took a needle and placed it in my hand below the thumb now that one did hurt, LOTS. After 30 minutes she came back took the 4 out of my leg but left the one in my hand, told me to stand up and bend my right leg at this point she took hold of the needle in my hand and wiggled it, HOLY MOLY that hurt like nothing on earth I have ever felt. She explained that this was normal. She did this a couple more times by which time my hand was sweating big style. Then she took the needle out of my hand. 5 hours later my hand still hurts but my knee does not. AMAZING. I’m having it again tomorrow. I only wish Amy would co-operate enough to have this sort of treatment she would definatley benefit from it.
Thats all for today folks. XXX
December 2nd, 2009
Hello peeps,
Today we’re a bit disappointed. Yesterday Amy had formed a little rash on her collar bone. ‘Nothing to worry about’ we thought as Amy chews her clothes quite a bit and little rashes come and go. Unfortunately on waking up today this rash has become bigger, solid and raised leading to the doctors believing its the result of an allergy, to what we don’t know. So, Amys treatment for 2pm today has been cancelled until further notice.
As you can imagine we’re diflated as you spend a day or 2 building yourself up for the SCT, but never mind. If we start feeling down again its a downward spiral. We just thought after Amy being ill with fever, sickness, cold, bla bla bla that she was getting back to herself. Hmmm, never expect anything!
On other matters here in China…Hayley, Brandy and I had our own scary adventure yesterday (Sunday). We had arranged a trip to the Jimo Market to do some shopping and to meet some other girls there, and I had an appointment to have a tattoo. Feeling confident we showed the taxi driver the sheet of paper that told him where we wanted to go (this is 8.30am). Now, as soon as he turned right out of the hospital we had a feeling but we thought, just maybe, he was taking us a different route. After 15 mins we started wondering where we were and so asked him (sort of) to pullover and double checked that he was taking us to Jimo, showing the sheet of paper again. ‘Yes, yes Jimo’, so off we went. Half hour later we arrived…and NOT at the Jimo Market that we are familiar with! Agh! Wrong place, a driver that can’t understand us and vice versa…to say that we we’re a little concerned is an understatement. So we made a call to a translator and explained the predicament we were in. Lucy told him to take us Downtown to Jimo and he refused (another story) but agreed to take us back to the hospital where we started. ‘Ok’ we thought feeling tetchy, but oh no that would of been to simple…another half hour and he has driven us to the Airport and wanting us to get out the taxi! Another call to another translator, Jack, and we’re off back to the hospital taking another half hour. We’re pretty fed up by now (saying it politely!) and asked Jack to meet us to tell the driver that we refuse to pay him the full amount he wanted paying for taking us everywhere but our intended destination. This got a little heated and we had to give 10rmb more just to get him to go away. Charlie (a company driver) come to the rescue and took us to Jimo in the end and we arrived there approx 2 n a half hrs after we originally left! The good thing was we found the girls we were meeting up with straight away, and i got my tattoo. Never again will i be getting a taxi to go far. Nothing is simple in this part of China!
Will write more later when we have more info about ‘the rash’. We’ve just been told Amy’s treatment will now be Wednesday.
Oh n Chris is forcing me to say ’3-0′ to the Chelsea … PANTS!!!
Laterz all xXx
November 30th, 2009
Hi all,
Just to say Amy is slowly on the mend. Her temperature has broken but she still isn’t 100%. Its turned into a cold now. Poor monkey!
Next treatment, which will be No.5, is on Monday. We have also gone for an extra treatment taking her up to 8 instead of 7 as we feel it makes sense to get the maximum amount of stemcells whilst we’re here.
I thought that i’d let those, who don’t already know Amy, know that she also has Autism as on here she is on the SOD blog (including hormone deficiency).
Amy is unwilling to socialise with many (or allow us to) and is unco-operative with life outside her familiar routines making family life quite isolated. Her communication skills are limited and she becomes irrate regularly throughout each day. Aswell as possible light perception (as she is black blind), we hope that Amy will one day open up and let the outside world in. She has so much to give and we hope that Amy will begin to become more relaxed and allow us to help her help herself and teach her as we feel that she is missing out on the joys that life can bring. At 8yrs old its getting increasingly more difficult to handle pickle as she’s a big girl now. Who knows what the future may bring.
Anyway, 2 weeks to go before we come home now! We really cannot wait to see our son, Lewis, and all our family and friends xXxXxXx
On the other hand, we have met wonderful families here from all over the globe and without them this would of been so much harder…so BIG thankyou to them all:) Amazing Keiran, Cheeky Spencer, Baby Angel Summer, Soldier Boy Matty, Brave Mia, Lil Cutey Jake, and new arrival Sweety pie Mallory are all champs and put us ‘Grown Ups’ to shame! We’d moan like mad!!! And there are more families yet to arrive…Cassie & London, we’ll see you soooon!!! Have a safe trip and Cassie…try your best hunni It’ll be ok <3
Ok, thats it. We’ll next write on Monday n let you know how treatment No.5 went <3 Feeling a lil more positive after the last experience.
Love 2 all xXxXx
Ps. Hot water is a nightmare over here….Room 10 is the one to be in (our room-but not whilst we’re in it, lol) It was previously Dakota’s and Hollys so i just saw – we we’re lucky!. We’ve had no probs so far and feel for the other families as hot water and heating are basic human needs! And be prepared to get aches n pains as the beds are like sleeping on your dining room table..OUCH!
Oh…and we have the kitchen back!!!
November 28th, 2009
Not been a great 24 hours here. Amys temperature continues to persist along with sneezing, coughing and sickness. She had a turbulent night and today is flaked out on the bed. Chris is unwell too. Both lacking sleep, you can imagine its great fun for all
On top of that, i’m fed up with the battle to get into the kitchen and the only appliance that was worth using has been removed and not replaced as the electricity keeps cutting out. Now i’m not a great cook at home, but here it is just complete hassle.
It feels like i’m constantly moaning…(yeah, ok i know i’m good at it!) but if its not the kitchen its the inconsistency of the nurses, the dust and cleaning or the little boy who thinks this is a playground and is bloody noisy. Oh, and our toilet almost overflowed this morning for a 2nd time, this time after it had been used (too much info, right!) Yuk!
But worst of all, we’ve seen no change in Amy yet… after 4 lots of stemcells. I know we have to be patient and that it could take anything upto 9 months but its the waiting, the wishing and the wanting… my patience is shot sky high with it all.
Is it really another 17 days to go? I’m feeling quite depressed with it all today. We wish we was at home. Its not forever but it sure does feel like it.
Oh well, you guys are getting ready for the day and we’re halfway through ours…another day to tick off (thank goodness).
Sorry to off load on here, but it helps to get it out rather than keep it in. For those on their way, please don’t fret. Not all experiences are the same…just bring anti-bacterial wipes ok!!!
Bye for now peeps, Lots of Love from Us to You xXx
Ps. Hope your all okay by the way??? Thinking of you all, as always xXx
November 26th, 2009
Previous Posts
