China trip Date : 23.08.06 - days 6-8
9.30 a.m Acupuncture. Three needles to the head, three in each leg, one in each arm. I cuddled her while she cried till she stopped. I felt quite sorry for Sacha today. All these treatments, strange people crowding round to stare at her all the time, a strange country, nothing familiar around her except me and Graham. If she could speak then we would be able to explain things to her but she cannot say anything and I don’t know to what extent she can understand what we’re saying to her. All I can do is give lots of cuddles and make soothing noises. After the needles came out, Dr Ge stuck three needles in quick succession down her spine to ‘stimulate her nerves’. She didn’t cry this time.10 a.m. NGF while Sacha watched Teletubbies. As soon as the DVD was finished Sacha started crying. She hardly ever cries and I knew something was wrong. I took her out of the pushchair and cuddled her. She was pale, shaking with pain, drawing her knees up to her chest and was covered in goose pimples. Once again, I had to stop my mind from going into overdrive as to what could be wrong with her. Graham and I tried to think of ‘common denominators’ i.e. things that had happened that could coincide with Sacha’s pain. Was it the Nerve Growth Factor? Was it the injection? Was it her breakfast? As we both had upset stomachs we thought it might be the food we had eaten the night before. About an hour later, I gave Sacha some Paediatric Nurofen for the pain and within a few minutes she started looking and feeling better. She stopped shaking and started smiling again. What a huge relief!!
Sunny had offered to baby-sit for the day while Graham and I went on a shopping expedition into town and we waited until we were sure that Sacha would be ok, left Sunny with detailed instructions on when to feed, how to put water into her gastrostomy tube etc and then left. There are some very good shopping areas about 1/2 hours walk from the hospital (or a short taxi ride away). The prices are exceptionally cheap and product quality ranges from excellent to medium value. Lots of bargains to be had.
On our return Sunny (who had babysat brilliantly) explained that her friends (from last night) would like to take us to a very special restaurant. How could we refuse? The waiters were on roller skates, the ‘beautiful’ greeters at the door were dressed in traditional purple Chinese robes, there were bamboo type plants stretching out into avenues inside the restaurant and little nooks with private table. We had a big glass round table with a lazy susan. Once again the food and company were great. We ate prawns, deer drumsticks (yes, deer!), chicken soup, scallops in garlic on vermicelli noodles served in their shells (my favourite), fish cooked in soy. The hosts had ordered for us and had chosen the fish because I had raved about the fish we had eaten at their house the night before. We had two types of organic beer – a light coloured and flavoured one and the other looked and tasted like Guinness. It was lovely.
Out hosts had brought a friend along to join us. He was Chinese, called Gavin and had studied for three years at Manchester University so his English was impeccable. They brought him along so that we would be better able to communicate with each other. This is just one example of the hospitality and thoughtfulness that has been directed our way at every opportunity. We have been treated like VIP’s by everyone!
As we were leaving the restaurant we realized that there was a huge tank with sea lions in it. Zhang Ding bought some fish cut up into small pieces that could be thrown to the seals. Graham lifted Sacha out of her pushchair so that she could see over the top into the pool. She laughed and laughed as the sea lions swam about lifting their heads out of the water for fishy snacks. There should be a picture on this blog somewhere. It was a real treat to see her so happy.
We all got two taxis to the Hot Pub and proceeded to spend an extremely happy evening with our new friends who taught us a great drinking game involving lots of dice (ask Sunny how to play it – she knows!). There was much laughing and confirming of friendships. Sacha was looked after by everyone once again during the evening. Lin Ke Er lifted her up to show her the bright lights of the neon signs in the Hot Pub and Zhang Ding treated her to a dance. This was probably the best day so far in terms of enjoyment. Sunny has such courteous friends and they were amazing with Sacha considering that they had only just met her the night before and both of them were men who did not care about her drool, her leaking nappy or the fact that she has a disability. She was totally included in everything and treated like Royalty!
Day Seven
Got up early as couldn’t go back to sleep. Although we have blinds at our window, it is very bright when you wake up. Checked some emails, informing some families- that we are in email contact with - that the Doctor we had been so desperately trying to get hold of in Beijing (who performed stem cell brain surgery on our friend’s child) had finally come back to us. He was inviting us to take Sacha there in September. Obviously, his services were no longer needed by us but maybe he would take their children on as patients for stem cell surgery. I hope so and wish them both our positive thoughts and energy for their children.
10.30a.m. Made Sacha breakfast of mashed banana and baby rice mixed with milk that I had bought at the supermarket. The nurses came to put her Nerve Growth Factor drip in. Immediately after breakfast Sacha became quite ill once again. She was moaning with pain in her pushchair. I put her on my lap and cuddled her. I could see was having the same experience as that which had happened the day before. Goose pimples, shivering and I could feel her little body scrunch up with each wave of pain. I could only imagine that it must be like having a period pain – bad news for a five year old!. Sacha’s eyes were closed and her hands and nails were blue. I didn’t feel too worried as I had given her Nurofen the day before and she had gotten better almost immediately. What was challenging was trying to find out what exactly was causing this. Graham suggested that it might be the milk we had bought in the supermarket. This made perfect sense! The speed with which her illness had started after she finished breakfast and the symptoms i.e. just like food poisoning.
Suddenly the two nurses who did the NGF IV came in with a doctor and Sunny. He asked quite a lot of questions such as ‘had this happened before’, ‘was she shaking before’, ‘is it a seizure’, ‘ why was I giving her Nurofen’. Sunny interpreted all of this for us. I suppose due to the nature of Sacha’s treatment the doctor was trying to assess whether Sacha’s illness had anything to do with her treatment and if not, why was she being ill. All of our doctors and nurses have told us that their best intention is to make Sacha healthy and I believe them. They are very thorough in everything they do which is so reassuring particularly when we are so far away from our own familiar (but not necessarily better) medical practitioners.
Once again I gave Sacha Nurofen and she recovered slowly with colour returning to her face and hands. Once she started smiling I knew she would be ok.. We had pizza for breakfast and stayed in the hospital for the rest of the day as Sacha slept on and off. No more milk for her! Dinner consisted of a large order of Chinese take away food delivered to our room which we ate with a bottle of red wine and watched a DVD.
Shenyang is very bustling and safe at all times of the day and night. I went to the ATM by myself at about 9pm. It was dark outside but the streets are well lit. There are always lots of people, including small children. Many people called out ‘hello’ as I went past. I think they were trying out their English on me. I always said hello back with a smile.
Day Eight
9.30 a.m Acupuncture. No crying from Sacha today.
10.00 Nerve Growth Factor IV
Sacha has yoghurt and banana for breakfast. No Milk! I go on a little shopping expedition to Walmart by myself to get some supplies. Sent quite a few emails on my return and wrote a lot more of Sacha’s web blog.
2pm. Chinese Press Conference. A flood of reporters and photographers come into the Common Room where I am waiting with Sacha and Graham. Sunny had already told me to expect this, earlier on in the day but I wasn’t prepared for so many large cameras being aimed at Sacha and lots of people calling her name at the same time. Sacha being the first Westerner to be treated here at the 463 Hospital is HUGE news in Shenyang and all the papers had come to cover her story. Mrs Lio (from Beike Group – the company who prepare and store stem cells) was interviewed along with the two Dr Wangs, myself and Graham. I was asked questions such as whether I thought Sacha would be cured and I answered that there has been no cure so far for this disease and I simply hoped that she would be able to regain some of the skills she has lost i.e. swallow reflex, mobility. Some of the questions were intensely personal such as asking Graham if he wanted to have children. I think the older Doctor Wang realized that this wasn’t really anything to do with Sacha’s treatment and called the questions to a halt.
The journalists and photographers then went with us to the Physiotherapy room to take pictures of Sacha’s massage and physio session. A lot of the journalists smiled at me or gave me the thumbs up sign. This was really nice and made me feel that they understood some of the emotional difficulties in coming so far on our journey. Graham and I stayed really close to Sacha during this whole so she would be reassured by our presence. She doesn’t show nervousness or fright due to the disease but we just wanted her to know we were there. Many pictures were taking of us and our doctors.
Later that evening we (me, Sacha and Graham) went out on a shopping trip. The shops are open till at least 10/10.30pm. Sacha was asleep for most of our long walk which was good as she has been sleeping on average 3-4 hours a day less than she usually does at home. The young Doctor Wang had told us earlier in the day that Sacha would be having her next injection at 8.30 a.m the next morning so we planned to keep Sacha up as late as possible so that she would be asleep again for the next treatment. After shopping we wandered around looking for somewhere to eat and got a bit lost. We weren’t worried though as we had the rudimentary map that Sunny had put together and knew vaguely in which direction KFC was in case we couldn’t find somewhere nice to eat. After asking for directions a couple of times, the bright lights of KFC loomed large like a beacon of shelter. We were so hungry after hours of shopping.
As we left the restaurant, two strange men started making hand gestures at us and came over giving us the ok sign and thumbs up signs and started stroking Sacha’s face. One of them kissed her forehead I wondered what the hell was going on and then realized that they must have read about her in the newspaper that evening! This was confirmed when we got in a taxi and another man poked his head in the window saying “Sacha, Sacha”. She was famous and the Chinese people wanted to offer Sacha their energy, love and support.
It hasn’t actually hit home until writing this that we now have the energy of the people in Shenyang behind us. How amazing to come this far.
Despite both being worn out, Graham and I kept Sacha up until our eyes were literally stinging. It would be so much better for her if she were asleep during the treatment as she has to be curled into a foetal position so that the space between her verterbrae could be safely accessed by the needle delivering the cells.
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!