China trip Date : 26.08.06 - days 9, 10, 11
I woke up early again – always before the alarm goes off! It’s the day of Sacha’s second injection and I am going to watch it this time. Of course I am a little nervous. I wake Graham up but we leave Sacha asleep. We have a little while till the procedure so I tell Graham that I’m going to write some more Blog to keep my mind occupied.
At 8.30 am (the time the procedure is due to take place) Sunny tells us that the stem cells haven’t arrived in the hospital from Beike’s facility yet so we will probably have to wait until the afternoon. I knew this was a possibility because I have read other Blogs where this has happened to other people. It is mildly annoying though because we kept Sacha up really late and got up really early!! So it’s business as usual:
9.30 a.m. Acupuncture – which Graham takes Sacha to. No nerve growth factor as Sacha will have this after the procedure later today. Give Sacha breakfast of boiled eggs and write blog for rest of morning.
The stem cells arrive at 11.50 a.m. just as Graham was setting off for a shopping day on his own – which we have now had to postpone as he want s to be there when Sacha has her injection. Doctor Wang is currently performing an op so it will have to take sometime after 1pm.
1.30 p.m. Doctor Wang (the young one) is now ready and we take Sacha into a room on the 10th floor (which is where we are staying). This is much better for us personally as she doesn’t have to be wheeled down to the Operating theatre and we can avoid the stares of all the patients and visitors we meet along the way. As I mentioned before, I found this a bit overwhelming last week. First Doctor Wang curls Sacha up into the foetal position and applies iodine over her back.. Rose (a nurse who has been helping us all week) helps me to keep her still as she’s about to have a lumbar puncture. Dr Wang gives her a shot of local anaethetic and shortly after inserts a fairly large needle into her back. Within this needle is another very fine needle which he keep withdrawing to see if any spinal fluid is coming out. He keep trying and trying with no success. I ask him why there is no fluid coming out and he explains that the pressure is simply too low and that in the future we must give Sacha more water to drink. I had actually been having thoughts of this myself based on what our Doctors in the UK had advised and also because it’s so hot over here – even being in the air conditioned hospital all day.
Finally after Doctor Wang reinserts the needle in between her 4th and 5th verterbrae we see some spinal cord fluid dripping out. Fortunately Sacha has fallen asleep by now and can’t feel anything. I was worried about how we were going to keep her still for so long. Thank God she can’t feel anything! It’s a little bit disconcerting when Doctor Wang’s mobile goes off in the middle of all of this! Rose has to reach into his pocket to deal with the call. Can you imagine that in the UK?.Also disconcerting is that many nurses don’t wear gloves when dealing with Sacha or handling the containers that the stem cells come in. I have mentioned this to Jon who will advise our Chinese doctors and nurses what we think in the West.
Sacha is given 2.5 ml of stem cells which Dr Wang advises us of at the time. He says that she was given 1.5 ml last time. I’ll find out later exactly how many cells are contained within this. As I mentioned before, because we are the first Westerners to be treated with stem cells here, both Beike company and the hospital are affording us some special privileges I feel. I feel lucky.
After this, Sacha who is still asleep, is given stem cell nourishment through the lumbar puncture as well as umbilical fluid and more Nerve Growth Factor. Sometimes I feel like a doctor myself when I write all this down. This time last year I didn’t have a clue what nerve growth factor was – I simply thought there was no hope for my daughter’s survival. This is what China has afforded us – hope – and there’s no price you can put on that!.
By now I am feeling pretty tired after keeping Sacha up late. She’s fine as she’s asleep but I have to keep checking on her in between reading my book and replying to emails. Graham is trying to send some pics to BBC South East but the email keeps crashing. I’m really keen for Sacha’s story to get maximum exposure so it will raise awareness of Batten Disease around the world as well as maybe getting some investment in the advancement of treatment for this hideous disease and to let other parents/carers know what options are available around the world for their children. I had to struggle to find out the information that I know now. No-one comes knocking on the door with a manual of what to do next!
4.30 Treatments for today are all finished and Sacha has woken up. I only have to keep her lying still for one more hour. This I can do. Once this is over she is quite awake and alert and has a big dinner and I write some more blog. Doctor Wang thinks that her next injection will be ok for her to have direct to the brain. I am really keen on this although I am nervous too. Graham and I are going back home on Saturday (as we need to get back to work) and Sacha’s dad, Neil arrives with his partner Rebecca on Friday to take over where Graham and I leave off. I don’t know yet how I will feel about leaving my precious daughter thousand of miles away half way across the world to have brain surgery.
Day Ten
Today I went shopping with Rose who took me to a wholesale market store. I buy a few presents for my family. Everything is incredibly cheap and I also buy a few Chinese items for our house. We have lunch in a small, out-of-the-way café. No sooner have we sat down than the people at the table with us start talking to Rose quite animatedly. They are looking at me and I can only guess that they have seen the newspaper articles about Sacha. Rose explains who I am and the people communicate their best wishes to Sacha. All the waitresses come over and everyone who comes into the restaurant says something nice. It is so touching
Later that evening we go to a Japanese BBQ restaurant with Jon and Sunny and order a fish/shellfish platter. It is wonderful. I think Sunny thinks we eat too much as we always devour as much as we can. Well, when in Rome….The staff here are also very attentive to Sacha. They come over and say hello and try to entertain her. She really is very famous!
Jon and Sunny have to leave early to pick up some patients from New York so Graham and I end our meal with a couple of sakis for good measure.
I should mention here that because of the time difference and the difference to our usual daily activities in the UK, Sacha has been going to sleep around midnight and waking up at 8 or 9 am. She has been getting getting 2-3 hours less sleep than she does at home and I’m sure this is affecting her moods. Also, there was no way we could bring all the equipment for her that we have at home – such as her special walker which she uses to scoot around the living room. It supports her round her waist so she can use her feet to try and walk. She has been confined to her buggy a lot of the time sitting in one position for fairly long periods which, I’m sure, makes her little body quite stiff. Add this together with the fact that she’s in a strange country, being forced to lie still for at least 6 hours a day once a week, is not in her own bed, is surrounded by strange faces etc etc and I’m surprised that she is coping as well as she is. She usually just takes everything in her stride with very little complaint.
Day 11 - Thursday
9.30 am – Acupuncture
10.00 – Nerve Growth Factor
Well did I speak too soon? Sacha is not herself at all today. Her whole body is floppy and listless. She doesn’t have a temperature and there has been no vomiting so I don’t know what’s wrong with her. This is very difficult for me because if I don’t know what’s wrong then I can’t fix it. Sacha can’t speak so she can’t tell me or indicate what’s the matter. It just seems as if she can’t be bothered to do anything. She hardly eats anything all day which I find really difficult to bear as I don’t want her to start having seizures because she’s not getting enough nourishment. We have bought with us a sackload of Fortini cartons. This is a food supplement that Sacha usually takes once a day at bedtime. Today, I give her three Fortinis!!!
All day, Sacha makes no effort to lift her arms or her legs and once again my mind goes into overdrive. Is it the stem cells? Will she be okay? Have I done the right thing in exposing her to so much change?
On the up side (and I know it seems odd) Sacha has laughed today more than at any time ever. She loves loud noises and the sound of someone sneezing can send her into a fit of giggles. She has laughed voluntarily and the sound of it lifts my heart.
3pm Physio.
Sacha uses a stander for the first time today. It is a flat horizontal board that she is strapped onto – to stop her from falling off. The board is then slowly moved into a vertical position so that Sacha is standing with her feet flat. This will help stop her Achilles heel from getting short as she now tends to stand on her toes. Prevention is better than cure and I do not want to have her heels operated on at a later date as it’s supposed to be a particularly nasty and painful operation. Sacha is still quite floppy and makes no effort to reach for the big soft ball that the Physiotherapist waves in front of her.
A new patient from New York has arrived today and has been placed in the room next door to ours. He is in his sixties and has brought his wife, son and two nurses with him. They have an awful lot of luggage! I won’t discuss his condition here but simply wish him well. Hopefully you can read good things about his progress on Stem Cells News at a later date. We have been very spoiled so far as we’ve been the only Westerners and now we’re going to have to share the attention. Shucks!
Later, Jon takes us out to a Hot Pot Restaurant similar to the one we went to on our first evening. Everyone cooks their own food in their own pot of boiling water which is next to them on the table. We had live prawns which were wriggling around in a Pyrex dish prior to being eaten. I must admit they were delicious. Graham didn’t have any and Jon felt sorry for them as they were being boiled alive!! We also had clams dipped in an eye-watering Wasabi type sauce, three different types of mushrooms and thin slices of beef. YUM. Once again Sacha was widely recognized by the staff and people on the street. She was quiet but happy, I think.
So many people have offered time and energy to support Sacha we have made a 'big' thank you page. Do tell us if we have missed you off the list!