Keiran received his 3rd lot of stemcells today. Nurse Linda fitted his cannula this morning and it went straight in first time & was done in seconds. Huge relief to both Keiran and I. We are hoping that we get Linda every time!!! Keiran merrily sat comfortably in the IV room listening to his Ipod & chatting while the stemcells were being administered.
Keith from Beike came to see us and brought us some coloured paper etc for me to put around the room to try and make some focus points for Keiran to use in the room; to perhaps help him to see if anything looks different. So I going to have an ‘art attack’ day tomorrow. We got chatting about various things & before I knew it 2 hours had passed.
We made dinner – Beef Chasseur & veg! Sat out in the common area talking to some of the other families. While we were sitting their, Keith (Beike) came in with a surprise for me………………………a toilet seat; covered in roses lol!!!! I was talking to him earlier today about the fact that our seat was broken & both times I’d asked for a new one they’d patched it up with cellotape. I couldn’t help but laugh when I saw it…….thank you Keith!! Simple things can make a girl happy lol!!
I must admit that things have improved at the hospital since we were here back in November 09. The bathrooms only have a slight odour to them – one air freshner helps (unlike the 10 I used last time). The water pressure is a little better. The hot water is still a bit of an issue BUT much more managable. The rooms appear to be cleaner & fresher than before. There seems to be more order with the way things are run & less people knocking at your door every 5 minutes. The staff are much much more approachable & are willing to listen & take on board what you are saying. I feel so much more at ease this time around.
Tomorrow is another day of therapies. Think we might try and head out for a walk to Century Park. Keiran wants to go and see if there’s anything new and to see what it looks/smells like in the summer. If it’s too hot we might go and treat ourselves to a massage as we NEED to get out of the hospital for a while before we go NUTS.
Love to all
Hayley xxxx
August 9th, 2010
It was good to be able to have the day off today!!
Yesterday was just the day from HELL. Woke up at 8am to a film crew on the ward. There must have been a good 20+ of them and cables & equipment were all over the place and right outside our door. This was the second day they were on the ward!!! I was not a happy bunny………it was unsafe for Keiran to even walk to the kitchen. To add injury to insult every time I opened the bedroom door I was told to be quiet or I couldn’t leave the room as they were in the middle of filming. They were even cheeky enough to close my door when I left it ajar. So, Keiran & I felt even more like caged animals!!!!!!! They didn’t leave until just before 6pm!!! What’s worse is they are coming back in the week for another couple of days. I do hope they are not expecting us to stay in our rooms AGAIN & not have access to the cooking facilities & common area………………God help them if I get PMT!!!
To add to all the hasle going on outside the room, everything I was doing on the computer was going wrong. I couldn’t log in to MSN & I had problems with Skype. Some of my desktop Icons had disappeared……….I was so frustrated.
Then it got even worse. Keiran & I were talking to mum back home & Keiran just broke down in tears & sobbed for about 20 mins 
As you can imagine, I then went to pieces & so did my mum. We’re gonna have our good days & we’re gonna have our bad & Keiran really felt homesick. So it was a Pizza & popcorn for comfort food……..he soon picked up.
Got taught how to play Texas Holdem’……never played before but managed to win the whole bag of pistachio nuts (don’t know how) & beat Cody, Janet & Graham. Was a gd way to cheer Keiran & I up.
Today was a walk down to the Holiday Inn for lunch with some of the other families on the ward. It was really weird, as Gerry recognised us from November……even asked where Chris & family were lol!
The Director & another Dr from Singapore came in and wanted to talk to us about our last trip over and about the whole experience. Ask me questions, and I tell you no lies!!!
Gonna finish chilling for a bit before a busy day tomorrow……..Treatment #3 via IV.
Love Hayley xxxxx
August 8th, 2010
Yesterday Keiran had his 2nd treatment but his first via Lumbar. The nurse came in the morning to fit his canula. Unfortunately, they didn’t get it the first time & had to stick him with a needle again. It seemed like it took ages for them to get it in on the 2nd attempt. At least this time they put it in where his hand was numb.
Ryan, from Beike, filmed Keiran today and we also had the chance to meet with Kyle (a previous patient – last Dec – who had huge improvements & now works for Beike).
Keiran stuffed his face at lunch time with a Chinese, as he has to fast for 2hours before and 2 hours after but has to lie down without lifting his head for 6 hours after. Which is quite hard to eat while lying down.
The day seemed to go so slow………..any stemcell day seems long & is worrying BUT lumbar days are just the worst!!! When Keiran went up at 4pm, he went in smiling & telling me not to worry. That is easier said than done, standing outside the doors waiting for him to come out just seemed to be forever & that horrible feeling in the pit of my stomach that just makes me want to be sick!!! When he came out 25mins later, he was still full of wit. Although, his eyes looked watery and he appeared a little pasty. He assured me he was fine & that it hurt a little when they were giving him the anethestic but he was ok after that. It was back to the room where he had to spend the next 6 hours lying down & not lifting his head. I tried to convince him to take 40 winks but he was having none of it because ‘he doesn’t sleep during the day’!!! After the 6 hours had passed, Keiran got up, had Pizza & chicken – said that he didn’t feel any discomfort, no aches & no pains anywhere. Huge, huge relief for me!!!!! I still couldn’t relax until the morning!!!
Keiran slept really well and didn’t wake in the nite. I slept patchy, as I wanted to check on him as much as I could and I couldn’t rest anyway.
This morning he got up fine!!! Again no aches, fever etc. He’s back to his normal chatty self as if nothing had happened! I am more relieved & I will try and relax a little bit more today. He never ceases to amaze me!!!!! I wish I could have his strength!!!
Unfortunately, we now have a new Dr. Dr Apple has had to take an unfortunate late vaccation. We will miss her lots but glad we had the chance to say bye Keiran will now be seen by Dr Tony. Had therapy today with Forrest.
Got to go over to the Lotte Mart to get some veg and then we will be having Beef Chasseur with veg for dinner. I’m GUTTED today as it doesn’t look like I will be able to get on Facebook any more!!!!! For some reason my laptop decided to delete loads of things and that was one of them I think it’s safe to say that I mite just go insane now it’s gone ……… LOL
Missing everyone
Love Hayley xxxx
August 7th, 2010
Today I had therapy this morning with Forrest. At lunch time we said goodbye to Cori, Nicole & Chace who left to return to Canada. Had some lunch then I had afternoon therapy with Forrest. I enjoy massage & fire cupping as they are my favourite, so I look forward to the afternoon sessions.
Lucy very kindly took me & mum over to the shopping centre over the road so that I could go on the rides. Mum had to come on them too. Mum said it was cheaper than last time we were here as they have a summer holiday special. I really enjoyed myself & my favourite ride was the roller coaster which goes around the shopping centre. On the way back to the hospital we stopped at KFC & I had popcorn chicken, chips & drink. The popcorn chicken is much much spicier than at home.
When we got back to the hospital Mum & I cooked a beef chasseur ready for our next homemade meal, mmmmm-mmmmm!!
I have my second treatment tomorrow, this time I’m having a lumbar. I’m a little nervous but not too worried about it as I know what to expect this time. I know Mum said that she’ll be worrying for the both of us & that she will want a cigarette. I will be fine. As Dr Apple says ‘You are such a fine boy’.
Missing everyone loads & I will see you all when I get home.
Lots of Love from
Keiran xxxxxxx
August 5th, 2010
Keiran had his canula taken out yesterday morning and once again has been fine with having the stemcells. No complaints at all – bless him!
Yesterday we grabbed a taxi over to the RT Mart on our own; which was fine. I had a bright idea of stocking up on loads of drinks, fruit, veg & meat as we were getting a taxi back. It felt good to know that we would be able to spend sometime in the kitchen making healthy & tasty food (rather than eating fast food). I had 6 rather large heavy bags – which carrying upto the room & helping Keiran was pretty hard going. When I unpacked the shopping; there was no meat. I’d only gone & left the large bag of mince, 2 packs of chicken breasts and pork chops in the flipping taxi!!!! What a complete idiot I felt – lol!! A top tip for everyone due to come out learn how to ask for a receipt from the taxi driver……..we have now. We had to take a trip over to the Lotte Mart & buy some chicken & we enjoyed having it with pots, veg & gravy.
Today we were going to have a walk down to Century Park BUT it was just too hot to go out. So another day, stuck in!! Think we need to get out soon or I’ll be climbing the walls.
Keiran’s blood tests came back & they were all fine. His growth hormone level was a little low but nothing to worry about. Ryan from Beike came in and talked to us today about doing a short video on Keiran’s treatment, while we are here, to put onto the stemcellsinchina website.
Lucy (one of the translators) called me a ‘chinese housewife’ today which made me laugh. She thinks I’m always running to the shop to buy food to cook & cleaning all the time LOL.
It’s been a week since we left home………so before we know it, it’ll be a week until we come home.
Missing everyone like crazy & really missing my comfie bed, washing machine, hoover & iron etc lol
Love to all
Hayley & Keiran
xxx
August 4th, 2010
Keiran was excited to see Forrest this morning. After he was checked over & a quick chat it was straight into therapies. Keiran started by having Electric Wave therapy – which involved the usual 20mins of Dominoes. Keiran won of course. Rematch tomorrow!!!! Then accupuncture for 30mins. Dr Apple came with the results of his VEP test and it proves that the optic nerves are reacting quicker than they were when we left in December!!!! Which is fantastic news!!! Fingers crossed peeps that we see even more xxx
Nurses came in to insert Keiran’s canula around 10.45 after the numbing cream had chance to work. Only one slight problem, the nurse fitted it at the side of his hand where he didn’t have the cream He did feel a little discomfort but was fine after a few minutes.
We went upto the IV treatment room around 2.30pm where Keiran happily sat talking to me & listening to his Ipod. After around 40minutes it was back to our room as if nothing happened.
It was McDonalds for dinner as we could not go shopping today to get food. Going to go to the RT Mart tomor & hopefully find some pasta so we can have a spag bog. Really need to cook while we are here as it helps the day go faster.
Keiran is sleeping at the mo & hopefully he won’t be too uncomfortable with the canula in & I will get the nurse to take it out first thing in the morn.
Love & miss you
xx
August 2nd, 2010
After 11 hours sleep, we got up all refreshed Saturday morning. We managed to come out into the common area and meet Graham (from the UK) who kindly invited us to lunch, with some of the other families on the ward, to the Holiday Inn. What a hard walk that was?!!!!! The heat & humidity over here is unbelievable!!! The sweat was dripping of us by the time we got there (about a 20min) walk. However, it was nice to get out of the hospital and talk to some of the other families.
When we got back to the hospital Keiran was taken to have his x-ray & ECG. After he had his ECG it looked like he had 9 nipples (from the marks that were left behind from the suckers).
Went and got some supplies from the Lotte Mart – nothing was in the same place, so it made it a little difficult to find what we needed but we managed.
Sat in the middle area with some of the families and played a game of cards called ‘Pounce’. It is a lethal game and when played with 8 people can be quite brutal lol!
Today Keiran didn’t wake up until just before 10am, so we had a slow mooch. After lunch we headed over to the Lotte Mart to find the stuff we couldn’t find yesterday LOL. Spoke to the family back home & watched Georgia eat a sausage & bacon sarnie!!!! So not fair!!!!!
Keiran and I made a chicken curry with the hope that it would taste nice – as we had no idea what curry mix we’d brought. It turned out ok – Keiran even had 2 helpings 
Tomorrow morning we will have more of an idea of a schedule as Forrest is due to see Keiran. Keiran is due to receive his 1st stemcells tomorrow via IV at 2pm (7am back home). I think it’s safe to say that I’ll be pleased when tomorrow’s ended but not look forward to Friday.
Much love to you all
Hayley & Keiran
xxxx
August 1st, 2010
After a rather stressful trip, which started before we even left Heathrow due to the incompotence of Virgin Atlantic staff……things did not improve & went from worse to even worse. We couldn’t land at Shanghai as there was a thuder storm and we didn’t have enough fuel to wait so we had to land elsewhere refuel & fly back into Shanghai. Once we got there, our assistance was just laughable (I laugh now but seriously we could have ended up anywhere) She was trying to put me on a bus & send me somewhere!!!!! Eventually, I dropped the help & found my own way to where I needed to be. When we did eventually get rechecked in and to the Gate we needed to be at we relaxed a little. But then the plane was delayed for hours and then the Gate no. was changed right at the very last moment. A little tip for anyone that’s due to come out…….always keep an eye on the Gate no. as it happened to us last time as well. Eventually 1am this morning we arrived at the hospital. Dumped our bags & just got into bed.
Day 2 – TODAY
We are completely shattered now (it;s 9pm) so we will keep it short as we are going to go to bed LOL.
All the translators, nurses & Dr Apple that we have seen today have been very pleased to see us again and can’t believe how big Keiran has got in a short period of time.
Today Keiran had his blood tests done. Been seen by Dr Apple and she is pleased with the tests that she has done this morning. We then had to visit the local Police Station to submit our passports. Came back had McDonalds – they deliver to the hospital – complete madness!! A trip downtown this afternoon to have VEP test done. Can’t believe they still cut an area of Keiran’s hair even though Keith gave him a No.1 all over!!!!!
Had a chinese for dinner tonight. Gonna go shopping tomor to buy some food & essentials.
Keiran’s first stemcells will be administered on Monday & then Friday. We have not seen Forrest yet; he’s due back Monday. So it looks like we will be having a quiet weekend.
Miss you all back home. Loads a love
Hayley & Keiran
xxxx
July 30th, 2010
I’m sorry I’ve not posted again for sometime BUT it’s been all systems go with arranging things for Keiran to retrurn for his 2nd course of treatment.
I’ve started the packing and hopefully I won’t forget anything. Especially as it’s not that easy to just nip to the shop & grab what you need!!
Thank you to everyone who has supported us over the past 18months, without you all it would not be possible for us to go a first time let alone a 2nd.
Onwards & upwards in preparing for our trip. Keiran & I fly out from Heathrow tomorrow at 6.30pm and will not arrive in Qingdao until 8.20pm the following day…….a heck of a lot of time to travel. So this will be our last entry until Friday.
We will miss you all but especially Georgia, Maddie & Keith. The girls have been fantastic in supporting Keiran and we love them loads xxxxxxxxxxx
July 27th, 2010
Sorry it’s been so long since our last update!!
Keiran is doing great……..So much so that we are in the process of returning in the next few months!!
Nothing has improved immensley since we’ve been home BUT we’ve noticed little things. The letter size has reduced by half the size & he can recognise them in his left eye m(weaker eye) as well as his right eye. We are still noticing the difference with his nystagumus & as for his bowel problems; it’s as if there was never a problem in the first place!?!?! I would love to go back to his primary school & prove to them that it was part of his condition. It is not stated anywhere that toilerty problems are linked with SOD but speak to other parents who have a child with the condition & it’s apparent that most of the kids suffer with a form of bowel problems………………….wish I knew that 8 yrs ago……Hind site is an amazing thing. Feeling alone back then; I would love to meet other families who have older children!!
On a brighter note, we are looking to retunr for a 2nd course of treatment in August this year. I’m hoping it will be a better experience & that conditions will be different this time round. Keiran is eager & excited with the hope that he will have more achievments this time and with his positive fibes I will soldier through. It will only be Keiran & I on this journey this time round. I’m just hoping he won’t be tooooooooooo bored with only me as his company. I’m sure that we will find many friends along the way & will find reassurance with those around us.
Will post more when we know dates etc about returning. Please wish us much luck.
Love Hayley & Keiran
xx
May 14th, 2010
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