We will be updating this blog as much as possible during our stay in China; hopefully this will also give an idea what to expect from those hoping to make the journey themselves. You can still contact us via email while we are away with any questions you may have. The red text below are links to short videos and pictures we have shot while here, you can also access them via the tabs on the sub menu above (videos cannot be viewed using Firefox)
BMI were fantastic at Belfast City Airport, and showed us into the business lounge. Matt came through with us to film us boarding, so we have to say a big thanks to the guys at George Best airport for giving us a good Northern Ireland send off. Arrived in London greeted with snow.Typically the day we leave is the worst snowfall in England for 18yrs, our flight to Hong Kong was delayed 4hrs so we missed our connecting flight to Qingdao, but Cathay Pacific were fantastic and rushed us straight through Hong Kong airport and onto a China eastern flight, unfortunately our bags are still in Hong Kong and will be delivered tomorrow.
Day 1:So we finally got to the hospital at about 4.30pm (China time is 8hrs ahead of UK). The hospital is really nice and although it is only 15mins by car from the airport its very quiet, all the doctors and nurses are all very helpful and speak great English. So far the only complaint is the tiredness from the trip itself. Off to bed for a decent sleep.
Day 2: Our first full day here. We slept 3 in a bed last night as they didn’t know Dakota needed a cot. But Wendy got on the ball first thing and one arrived this morning so we are looking forward to a peaceful night tonight without Cody kicking us in the face while sleeping. Cody also got her blood workup done this morning which was a noisy 15 mins, but that’s usual for her. The doctors all came this morning also, and after speaking with Dr Bing and the head doctor we are going to try the spinal treatment, initially we had said we wanted to go all IV, but after a long talk we decided to try IV first, then a spinal. We asked that Cody be sedated though for the spinal treatment as you have to remain at peace for up to 6 hrs afterward, and she is too young to understand that. If the first spinal is too much for her we will go to IV for the remaining treatments. The occupational therapist (Tom) was also in, and she is going to see him at 3 o'clock for a session, then back to the room for some acupuncture (although i cant see that happening knowing Cody). lunch is ordered around 11am, with Jack going out to the restaurants to get whatever you fancy. Spring rolls and special fried rice are the order for lunch, we are famished so its sure to go down well. So far our door has not stopped, which isn’t a bad thing. The doctors and nurses here really do see to it that you know exactly what and when things are happening, with a doctor always available to answer any questions you have. First impressions are good.
Cody had X rays and an ECG done today, all were fine. Our cases arrived in the evening and it felt so good to get into clean clothes. The laptop is a saviour, I suggest anyone who is planning to come out for the treatment arm themselves with a laptop and get Skype installed. Calls back home are really expensive, with received calls costing £1.35 on my mobile. Its also let us keep up to date with our fav TV programs from back home, as we downloaded Ross Kemp return to Afghanistan tonight and watched it. Tomorrow Cody has 2 physio sessions scheduled one in the morning and one in the afternoon. Wilma was at the market earlier, again she said it’s an experience when compared to the likes of Tesco back home, but as they say, when in Rome and all that.
Day 3: Cody had her 2 sessions of acupuncture today, the first one went ok after a bit of persuading from us to lie still, the second one though was a different story as it came at the time she usually has a nap. So bad temper prevailed and we called it off after a few minutes, she was having none of it. First treatment comes tomorrow.
Lunch today was a pizza each, I had a large meat pizza (it was as big as a car wheel), Wilma had a medium cheese (big enough that she couldn’t finish it) with Cody shifting her attentions between the two of us, and they came with 2litres of Coca Cola, all for the bargain price of 120 Yen (about £11) and well worth it. They were absolutely lovely. Dinner was spring rolls (a full big plate full arrived), diced chicken in chilli sauce, and fried rice, which came to 42 Yen (about £4), which knocked me sideways. It’s really cheap to feed yourself here compared to back home, and everything so far has been outstanding. We had a visit from Ryan from Beike today, just to say hello and answer any questions we had, we spoke about stem cells for a while, along with the treatments etc. But he was telling us some of the prices here and we couldn’t believe how cheap things are across the board. He was also telling us about the city and suggested some great places to visit which we will have to do while we are here. Interesting place. Wilma also dragged me to the supermarket today, and i have to agree its an experience like none I’ve had back home food shopping, but was fun.
Day 4: Bloods were attempted first thing this morning. Cody has never been easy to get blood from, and this morning was no exception, after two attempts they had to give up, they couldn’t find a vein in either arm, and they also tried her head, but again no good. Cody got so worked up they had to stop, and it took us 20mins to get her calmed down again. Should be fun later when she has to get a line put in for the stem cell treatment itself.
They managed to get the main line into Cody this afternoon; it had to go into her head which caused no end of shouting and screaming at the time. They also got the blood needed. Around 4:30 we went for the first treatment, with Cody enjoying herself and was really chatty to the nurses. The treatment was applied via the line put in earlier, and lasted for about 30mins. It caused Cody no stress at all, and she kept the nurses entertained from start to finish.
We also had a visit from Jon from Beike, who went over any questions we had, and had a good chat about Qingdao, the city shopping and Dakota herself. Jon also organised another treatment for Dakota for free, which was a big (really nice) surprise. I think I owe him a few beers for that.Its nice to have friendly faces from the company call in just to see how you are keeping, makes you feel good when people treat you more than just a customer, and everyone we have met from Beike have went out of their way to make us all feel welcome. Next treatment is on Wednesday, it’s the spinal. But we have the entire weekend free now to do as we please.
Day 5: Free day today, but we can’t go anywhere until the line is removed from Cody’s head. Dr Bing says it stays in for 24hrs so that should mean it will come out about 3 pm.
Line was removed about 4pm today, so we went to the RT Mart, for a walk and to pick up a few bits and pieces. Other than that we had a quiet day all round.
Day 6: Another free day today, so we asked Amanda to order a car for us and off we went to downtown Qingdao for a visit to Jimo market bargain hunting. The market is built on a large square, with 2 floors below ground level. There is absolutely everything you could want in it, and the clothes are extremely good value. Needless to say we found a few that just had to come home with us. Highly recommend a visit to anyone coming here.
Tonight we are going to go to the Holiday Inn for dinner; it’s only a ten minute walk from the hospital and is a five star hotel.
Day 7: First day it has rained, just our luck as we told Cody we would take her to Qingdao park today, which is a 20 minute walk away from the hospital. But unless the weather picks up that will be on the back burner for another day.
Another session of acupuncture this morning with Tom, which went pretty well considering Cody’s previous temper tantrums. The doctors also paid a visit on the rounds.
The afternoon acupuncture went without incident, and tonight we went to the RT Mart for a few things. I embraced the Chinese culture and got a traditional jacket, and Cody got two Chinese traditional outfits, all for a complete bargain. It’s also the lantern festival tonight, which is the end of the Chinese New Year celebrations. The view from our window was fantastic with the fireworks lighting up the skyline all round.
Day 8: Bloods were repeated this morning, and this afternoon we have to go downtown to have an eye test done. Cody couldn’t have her morning massage session with Tom as she couldn’t eat until the bloods were done, and she wasn’t in the best of form so Tom decided it would be better to leave it until later.
Quite a busy day today, with the bloods first, then this afternoon we were taken downtown to the Qingdao eye hospital for a battery of tests, just to gauge Cody’s vision limits. All good intentions, but Cody refused point blank to cooperate, and most of the tests didn’t get good results back, simply because she would not do them. Afterwards we had some time to kill and explored some of downtown Qingdao. It’s a really big city; you get an idea just how big when driving through it. On the way back she was so tired she fell asleep, and never woke even coming back into the hospital, in the lift, or back to our room. Every time she has her bloods checked she is always the same and enjoys a good sleep.
Day 9: A warm sunny Wednesday, and time for another treatment. Cody had 2 bouts of massage today, and then the nurses came and put the IV line in. Luckily this time they got it into her hand, but she still shouted the place down.
The treatment was due at 2.30pm, but due to a hold up on the stem cells they were not here on time. The nurse called and said it has been put back to about 7.30pm, and as I write this its 6.12pm. So fingers crossed we can get it done this evening, as if it is put off until tomorrow we will have to stay in the hospital on Friday, which was our free day this week which we planned on taking Cody to the zoo and do some sightseeing.
Stem cells arrived, and Cody went for her treatment around 7.45pm. All went without any fuss, and we finished up with the treatment in our room.
What all the fuss is about, the stem cells themselves
Day 10: Reasonably quiet day today, Cody had a massage session with Tom at 9am and was due another one at 3pm. But she fell asleep at 1pm and slept for 4 hours. The nurse came and removed the line from her hand, which she wasn’t happy about again. We don’t think that it’s actually sore, it's more that Cody absolutely detests being held. As soon as she is let go she is fine again. So we grin and bear the few minutes of drama and everything goes back to normal. Like someone flicking a switch on and off.
Day 11: Free day today, so we had a reasonably early start and went to Under Water World in downtown Qingdao. Was a great outing, and loads of pictures were taken. They have shark tanks, crocodiles, giant sea turtles and the world’s biggest indoor aquarium. We all really enjoyed it, and it was nice to get out and about for the morning. It’s a bit cold today, but again, nothing worse than a cold day back home. We were going to go to the Navy museum but due to the high winds it was closed for the day. Understandable when most of the exhibits are floating. But we still have a few weeks left here so we will probably get there at some stage.
Day 12: Cody had her massage at 9am this morning, then we said goodbye to Jenny and Claire, an Australian mother and daughter who headed home today. Cody will certainly miss them, as for the last few days all we have heard from her is “Jenny, Jenny, and Jenny”. After we all went downtown to Jimo Road market. Was less crowded today than last Sunday, So anyone heading there with kids I would say leave it until a weekday or a Saturday. Cody got a few more traditional Chinese outfits (she looks too cute in them and they cost next to nothing). We got back about 2pm, and we all fell asleep. The early mornings must have caught up with us all. We were going to go to the RT Mart for a few things but decided to leave it until tomorrow. So tonight we will just have a quiet one in the room and watch a film. I bought a few of the local beers brewed in the city, Tsingtao beer (pronounced same as Qingdao), so I’ll have a beer and rip open the Pringles, well it is Valentine’s day after all.
Good luck to Claire, and we all hope the good results just keep on coming.
Day 13: We went to the park this morning, was nice but it was absolutely freezing, so 30 mins was more than enough. Nothing on today for Cody, so we will probably just stay about the hospital, although we didn’t go to the RT Mart last night after all, we will likely be down this evening.
Day 14: New week and a new schedule. Cody will have her treatments on Monday and Friday this week. So today she got the line in for the IV. Back into the head this time as they couldn’t get anywhere in her arms or feet. Another line meant another screaming match, and she showed her lungs were doing well. But in it went and she promptly fell asleep. The IV’s are running late today again, and Cody is due to get hers around 7:30pm, when it was originally due at 2pm. Still, doesn’t matter much, as once the line is in you can’t leave the hospital.
Quite a nice day today, the sun is shining in our window and its warm, complete opposite of yesterdays sub zero temperatures. Jon sent us an email this morning with a link to a news story in the USA.
Who says this treatment cant work? Just another story that shows the results are positive. We had a huge step today ourselves, but will keep things quiet for the time being. Wilma went to the RT Mart with another parent here from Brazil. Will be her first time down, so better to go with someone who has been already, at least on the first visit. We cant go anywhere the rest of the day due to the treatment and the line being in, so it looks like its Family Guy and the Simpsons streaming on the internet all day (you really need a laptop when coming here, i know i said before but its been a massive bonus that we brought one).
Treatment tonight was easy as usual. Finished around 8:30pm, and brought Cody back to the room only for her to tell us she wanted to go for a walk. So off we went walking round the stem cell floor for a while. Then she decided she wanted noodles and polished off a carton of beef noodles. She is eating like a horse here.
Day 15: Patiently waiting on the line coming out today so we can get out for a walk. For some reason the walls are closing in today. It’s a nice day outside too (well looking out the window it is). Its 12.30pm as I write this, so hopefully it should be taken out pretty soon.
Line came out about 4pm, and we all went down to RT Mart, not that we needed anything but just to get out for an hour. Cody had her sleep earlier, as she was really tired today for some reason, strangely all of us were the same. Don’t know why but we were all wrecked. Dr Bing and Dr Lisa were in today to check how things were going and were pleasantly surprised. Cody is still enjoying herself here, and showing no signs of that changing. Little wonder with all the attention she is getting.
We must add, a massive thank you to Claire for what she done. We all miss you both and will keep you updated.
Day 16: Today started off terrible; think I had a dodgy KFC fillet burger as my stomach was in knots. Thankfully it passed as the day went on. Cody was her usual talkative self all day, she has started telling us what the exchange rate is for RMB (local currency), don’t know where she gets it from!
We went out with Jon and some of the Beike guys for dinner. What a table of food arrived too. Unfortunately with the stomach not back to 100% I didn’t eat too much, but true to form Cody had whatever was going. Was a fantastic night and the craic was great. Thanks guys, was nice to get out and about for a while. And thankfully we didn’t pick up the bill, the receipt was a mile long!!
Day 17: Nursing a delicate head this morning, thankfully Cody slept that little bit longer today. She overslept and didn’t get her massage this morning, then missed the afternoon one as it clashed with nap time. In fact we all had an afternoon nap today. Was a pretty quiet day today, with all good intentions of going downtown, we didn’t bother. Will probably leave it until Saturday, as its treatment day tomorrow so no going out anywhere with the line in.
Again a big thanks to Jenny and Dave, you played a big part in pushing us a step further. Hope all is well down under.
Day 18: Friday started really early, we got a knock on the door at 7:15am, from a nurse wanting to take Cody’s temperature. Needless to say we were far from happy about it. It woke everyone up, Cody included. Now normally we don’t mind but 7:15 for a temperature was a bit early. From now on the “Do Not Disturb” sign is going on the door. So it’s been a long day.
We went to the Jusco shopping center today, more so to just get out for a few hours. Bonus was we found a McDonalds, now I’m not a big McDonalds fan, but I enjoyed my Big Mac meal today. Shortly after we came back to the hospital, Cody had her line put in (hand again thankfully), to the usual shouting and screaming match. But in first time so was as good as it can get. She fell asleep shortly afterwards, which is a good thing considering she will get her treatment at around 7.30pm tonight. Should be as straight forward as usual, with no great dramas.
Talk about speak to soon, Cody went for her treatment tonight, but the IV line that was put in today was no good. Nothing was getting through. Now Cody has never been easy to get a line into, or take blood from at any time. So finding another site for the line was a nightmare. We ended up taking her to the paediatric ward and the guys down there done it. As I type this its 10:28pm and Cody is just away for her stem cells. It’s not the staff’s fault; just that She is really hard to get a vein. Needless to say there was a serious amount of screaming going on, which is the hardest part for any parent. Thankfully we have been through this so many times that, although it still affects us to hear our child scream like that, we know that a lot of it is temper also. Thankfully though it’s done now. At least until Monday when she is due another treatment.
Day 19: Free day today, we had the nurses take the line out early, as today is a free day. We went down to Jimo Road market again, more to get out than anything else. We spent a few hours there then went to Wal Mart but never again. Honestly it was packed out, and after 15 mins I had enough. So home we came, stayed around the hospital for a few hours then went down to the Holiday Inn for dinner. Again it was perfect. I have to recommend that anyone who comes here should really visit the Holiday Inn at least once for dinner. Everything, from the service to the food is 10 out of 10. Michael the manager is a great guy and makes sure everything is just right for you. Genuine nice guy.
Day 20: We got up this morning, had breakfast then down to the RT Mart for a while. The BBC guys arrive today with Matt and the filming starts tomorrow. I’m heading down to the airport around 1:30pm to meet them, meanwhile Wilma and Cody are going to the Holiday Inn with a few of the other families as the heating is going off in the hospital for a while. In fact it’s going off all over town, must be working on something here. Anyhow, it’s a good excuse to get out for a while.
Day 21: Free day today, but the BBC arrived yesterday. So all day was spent with them getting their bearings. While I was out with them, Wilma and Cody went to the Holiday Inn for dinner with a few of the other families here. Was a good day, and broke up the routine we have fallen into while here. Which at this stage is a good thing as homesickness is setting in all round.
Day 22: Massage session this morning went fine as usual. Cody becoming an old pro at it. The BBC were doing a lot of filming today so it also broke up the day nicely. The only drama was Cody getting her line in. Took about 12 attempts to find a good site for it, screaming all the way. Treatment went fine again though, no problems at all, as usual. All in all another day gone with no issues.
Day 23: Wilma has been vomiting all day today. The doctor gave her up some medication but she couldn’t even keep it down. Must have been something she ate. Other than that it’s been an pretty uneventful day. Had to stay around the hospital with Wilma being ill all day so the day dragged by. Hopefully tomorrow things will be better.
Day 24: Although Wilma still isn’t 100% we went out today downtown. The BBC guys had a lot of shots to get so we went along the seafront and done a few shots, then an interview on the promenade. Talk about drawing attention. While doing the sit down a crowd of maybe 30 gathered around, gives you a feeling of what it is like for celebrities. Honestly I don’t know how they handle it. Everywhere we went a crowd appeared. It was an experience to say the least. After the seaside shots we went up to a high point in the city, which was also a park area. There was some fantastic views over the old town reaching down into the ultra modern Downtown center with its huge skyscrapers and glass buildings. Afterwards we heading back to the hospital, arriving in around 6pm. Was a busy day, so with everyone tired we were all in bed for 10pm. Dreading tomorrow, with the IV having been so hard to place the last two times (especially Mondays line). But fingers crossed it will go in without too much trouble.
Day 25: This morning during the doctor’s visit we asked Dr Bing if he could ask a paediatrician to put the line in to Cody. We thought it best since the last two times the nurses called one up to do it anyway, but only after several attempts. So to cut down on stress for her we thought it best to do that first time. Dr Bing arranged that, and the line went in relatively easily, although it had to go in her head again. Cody and me fell asleep this afternoon, and she woke up, had something to eat, then went for her stem cells. Good timing all round. So tonight we will staying in the hospital, as the line stays in for 24 hrs and we cant go out while it is in.
Day 26: Line came out early, but we had no plans for today other than packing. Got the most of it out of the way, and its down to counting off the hours until home. Went over to the holiday Inn for dinner with the guys from the BBC, and had a great last night over a fantastic meal and a good bit of craic.
Day 27: Home time. As much as our trip to Qingdao has been enjoyable (not to mention miraculous with Dakota’s sight) we are all looking forward to getting home. It’s been a long haul but worth every penny, and every minute it took to bring us here. Everyone has been fantastic, from the cleaners on the ward, the nurses, the doctors, the guys from Beike, even Michael the manager from the Holiday Inn. Thanks to all you guys for making the long stay from home so easy on us. To all the friends we made on the ward, we wish you all the very best of luck with your treatments and have our fingers crossed that you get the results you were all hoping for.
You changed Dakota’s life beyond measure, and made every penny raised worth 100 times more than its face value. You guys are giving hope where there was none. It’s hard to put the gratification we feel into adequate words. You brought light to our daughter’s world where there was only darkness. We wish you all the very best and keep up the fantastic work. You guys really do make a difference.
Well everyone we made it home. Its a long haul but i would have no hesitation of doing it again tomorrow. Again we want to wish everyone involved a massive thank you. We will never forget you all. For all the guys on the ward that we met, we wish you every success. We made friends that we will always remember. Take care and we hope you get the results you wanted. Lets all keep in touch and maybe our paths will cross again.
To everyone back home who helped make this possible, you guys all deserve a massive massive thank you. Without you guys none of this would have been possible. You gave Dakota a gift that will never be forgotten and one which we will be forever grateful.
I was born in April 2006 with a rare brain condition called Septo-Optic Dysplasia. In the first year of my life i spent 8 months in hospital with various illnesses and problems all relating to to my condition. Septo-Optic Dysplasia causes various problems for me, including pituitary deficiences, hormone deficiences, low muscle tone, seizures, and also I am blind. I have to have hormone replacement everyday to help me grow, and i am on medication everyday, including steroids and growth hormone injections. I also have various other health issues, all related to my condition, and need to attend hospital for regular blood tests, just to make sure that the levels of my medication are correct otherwise i would be very ill again. I have open access to the childrens ward in my local hospital, which is good because i spend a lot of time there due to being prone to infections and illness.
What i hope to do.
After coming home from China in March my sight has went from light perception only to seeing at a distance of six feet. I am hoping to go back one last time, as the doctors feel i would benefit even more from another round of treatment.
New pics added to the photo album