Gabriel’s ROP Blog

I don’t think this blog is regarding the stem cells anymore. It is simply for Gabriel. It is a record of his milestone. I had absolutely no intention in updating the blog this morning, but then this just happened and I need to remember this special incident.

I was right in front of the computer, in the living room, typing as I am now. Gabriel was playing in the hall. He was making a lot of sounds. A while later, he was saying, “up.. no.. up.. no…”. I had a feeling that he was climbing the stairs but didn’t bother to check and continued to do my emails. If he did, he will normally do just 2-3 steps. And then again, if he did, it would be one of those rare good days when he was ‘actually’ mobile. After a while, I heard him again, this time, he sounded different, with echo, like he was on top of the stairs. I ran, and sure enough, he was on top, on the landing!

He did his ‘circling’ a few times, I led him towards another step, and up, he continued his way all the way to the upper floor. He hesitated a little, not knowing if he should turn left or right. I guided his direction, he shifted his bottom (that’s the way he moves nowadays; on his butts), and all the way into his room.

Now the best thing was, he now knew where he was. He continued his way to the ‘woolly’ carpet, and bingo, he was more confident of his position. He continued to shift his bottom, towards his favourite toy, lifted his arm to touch the ‘expected’ toy. The toy made the music he was waiting for, and there, he got it!

The next thing I knew, he had moved across his room and had climbed on top of his bed. He was clapping, and jumping on his knees, lied on his back, rolled over, pressed his face on the bed, very happy.

I’m so proud of him! My Gabby.

Regards,
Asty

Hi there,

It has been a long time since I have updated the blog. I’m so sorry that it seems that my blog is somewhat like a roller-coaster kind of story. One time, it was all sunny, the next was gloom and damnations. Perhaps it was a reflection of the reality. May be it was simply me and my moods.

Well, friends. There is nothing earth-shattering to tell you. There is no bad news neither. Gabriel in general is doing better. He repeats a few more words and uses a couple of more meaningful words. He is also more mobile and crawls to places more frequent then before. He holds his head high up and straight half of the time now. And often he would tilt his head, and ‘scan’ or ‘search’ with his eyes, as though looking for something. But he is as blind as ever. Once when he was sitting on my lap when we drove through a shady road, I noticed that he shut his eyes when the car swerved to the sunny side and then re-opened his eyes when in the shades. He did this throughout the short journey. He gave us the impression that he is having some light perception. But then, when we shown the torch light into his eyes, he didn’t even acknowledge it. It’s all a contradiction of incidents. So we are never sure. All in all, we can only say that he is progressing, at a snail’s pace.

I sometimes wonder if the stem cells are still growing and alive in his body. I wonder if they are still working to improve his ‘condition’. I also wonder if his progress had simply been due to his natural course of growing up. However, I often think that his current steady small progress is a mix of both, natural and the additional cells which somehow had served as a little booster.

I have somewhat accepted that I can’t keep looking at the timeline to conclude that the stem cells had ‘worked’. I have come to think that the stem cells had worked in its own way. To say that it didn’t work would not be true as I had seen the positive change in Gabriel in China. However small, the change was there. And the progress kept going. There were no thundering miracles like what had happened to some other patients. What we had got had been subtle little progress. Different body works differently. This is as good as what Gabriel is going to get from his treatment in China, I believe. And I think it had not been nothing. It had helped him and is still helping him in certain ways. Not in the way where I had initially had gone for, but it had still been good for him.

I pray that the stem cells are still living, alive and growing in his body, that it will continue to help him to progress and be stronger. He seems to be going there. Slowly at his own pace. For those of you who might be going through my similar uncertainties, be patient and look at the positive change in your child. That might have been the ‘miracle’ of the stem cells. You might have been wishing for something else and was disappointed. But, you might see something else there that you had not been aware of its importance before. You might then realised how far your child had gone forward.

Best regards,
Asty
astychow@yahoo.com

Hello there,

It had not been easy for the past few weeks. We have not seen any improvement in Gabriel at all. In fact, it had been pretty difficult. He threw tantrums for little or often unknown reasons. Cried and even knocked his forehead on the floor, hard, many times. At this point of writing, he is bearing a big bruise in the middle of his forehead, as a result of these tantrums.

He didn’t make any progress in his walking. He is still as clumsy as before.
He doesn’t eat more neither. He hardly finished his feeds each time.
He doesn’t talk more. He has been pretty quiet, especially this week.

It is totally disheartening. It’s been a month and 2 weeks now since the last stem cells treatment. This is definitely not a fairy tale with a happily ever after ending. There is no end of waiting and hoping. I pray that the waiting will be cut short soon, that some results will start to show very soon, that all efforts done were not in vain.

I hope the next post from me will bear some good news for all. Take care for now.

Best regards,
Asty
astychow@yahoo.com

Hello there,

I’m so afraid to write as I’m afraid to give you the wrong impression of Gabriel’s progress. All is not a smooth linear line up. There are ups and downs. Generally speaking, I guess, I can bravely say, the curve line is going up.

Just right after I’ve written the blog a few weeks ago that, Gabriel was doing great, the week after was the most horrible week since stem cells. Gabriel was back to his vomitting episodes. He gave terrible tantrums. He really wasn’t at his best. Even at his favourite speech therapy’s session, he had cried and screamed. It was back to the Gabriel I’ve known before the stem cells. I thought all these screamings and vomitting were history. Well, evidently, it was not.

And then, as it turned out, he was constipating. Poor Gabriel took his time. And finally towards the end of the week he was much much better. I have my cheerful adorable boy back.

And then he had the strange rashes on his chest and at the back of his neck. At first I thought it was heat rash and then I realised that it was probably due to both heat as well as his scratching when he was throwing tantrums. He has the tendency to bang his head or scratch himself when he is upset. For a brief while, I was afraid it was a reaction from the stem cells treatment. But well, no more rashes. It had stayed for just a few days and then gone, together with his bad mood.

Gabriel can walk with only a hand held, as like a few weeks ago. But there are times when he would seek for both hands. However, I noticed that, once he gained his confidence, he will do well walking with only one hand support. Sometimes, I would relax my arm so much, that I felt he was simply holding on to me, for the sake of holding. The support was so minimal. This was at times, not all the times.

Am I still glad that he had gone for the stem cells treatment? Yes, I am. So is my husband. I looked back and I think that I have seen some sort of improvement in him, in a weekly basis. Nothing to his vision. Only on his overall development. And trust me, it is a big thing to improve on a weekly basis. He was more or less stagnant in his development for the past 2 years.

Last night, as we were playing with the children, tickling and all, as usual Gabriel was very excited. He loves this moment in the evening, when their father plays with them. When his sister tickled his tummy while he was sitting on the floor, I saw that he shifted his bottom, to move away from his sister. This went on and on. Of course, with plenty of giggles and hysterical laughters. I realised that he never did that before. Normally, when he was ‘attacked’, he would simply curl himself up, laughing helplessly, couldn’t move himself away from the situation. Now, he is doing it. It’s fantastic to see!

Last weekend, we went to a very nice store in town. There were some store employees at the entrance, some dressed as a clown, another as other character. They made music, noise, games, blew bubbles, and stuff like that, to the children. My other 2 older kids, were of course, jumping with joy, excited and chased after the bubbles. As for Gabriel, I was a little worried of the noise. Nonetheless, I let him out of his stroller, and walked him around. On the floor, it was scattled with a few moving, jumping and sound making toys, like puppies, rabbits, hamster in a ball, etc. As we walked towards these toys, Gabriel kicked on one, accidentally. Naturally, that toy, ‘reacted’. I start to get ready to pick up and hug Gabriel who I expected would be frighten and would probably need some consolation. He stopped in his track, and then to my surprise, instead of turning to hug my legs, he bent on his knees and sat on the floor. He reached out and touched the ‘offending’ toy. It was such a delight! And he had a lot of fun with the different toys around. He was curious and played with each of them. Well, well. That, was a big thing!

Like I’ve said in my previous blogs that, Gabriel was less sensitive and more receptive or aware of his environment. I would like to give you another example, on teeth brushing. I tried to include Gabriel during the teeth brushing time, before bedtime, since a long while now. (Gabriel has almost all his teeth.) I always instructed his older brother who is 5 to say “ee” and “aah” as I brushed his teeth. A method I had used to show him how to open his mouth. And I had Gabriel there so that he can hear it, hoping that he will do “monkey sees, monkey do”. It had never worked. Although he would say “ee” and “aah” sometimes, and knew that it’s “ee” and “aah” time, Gabriel hated the toothbrush. Well, this time it is different. He not only allowed me to brush his teeth, he was actually enjoying it, each time, opening his mouth by saying “ee” or “aah” in accordance to the position I needed him to be. In addition to that, he made ‘spitting’ noises, following his older brother when he rinsed his mouth. It was so cute and so fun and he was so happy.

These were just the few little things I could remember. However, I have to say that, I am somewhat still hoping for something in his vision. Well, there really is no change at all. I’ve played my fingers in front of his good eye, opened and closed the curtains for lights, had colourful twinkling lights of toys placed in front of his face; unfortunately, there was no reaction at all. I know I shouldn’t be disappointed as he does have a little positive progress from the treatment. But then, how can I not when the eye sight was the first thing that triggered us to go for the stem cells treatment. On the other hand, I am grateful for his improvements. And this, I believe, is thanks to the stem cells. I believe that it is due to the treatment that Gabriel is doing what he is doing now. There is no other explanation to the sudden speed of his progress.

As for now, I am back to my orginal goal. Finding education for Gabriel. I am still hoping that he will go to ‘school’ in September. Once again, fingers crossed. And once again, patience. Finally, once again, remember that stem cells is not a miracle. It could be a cure but might not where you thought it would be. Whatever it is, my husband and I are glad that Gabriel is given this chance. I just need to keep cool and keep my faith.

Best regards,
Asty
astychow@yahoo.com

Gabriel was afraid of space. He won’t let go of his hands when he walked. He walked clumsily with 2 hands held, despite of daily practice for 3 years. He dared not touch his surroundings and needed a lot of assurance before exploring with his hands. We tried having him walked with only a hand held, he walked horribly. Often with another hand gropping for more support. And then ended with both hands holding on to a hand. He walked with both legs wide apart, totally rigid, afraid to fall.

Last night, with only his right hand held, he walked. Steadily and beautifully. From one bedroom to another. One step after another. Confident. A better ‘walk’ than the ‘walk’ with his both hands held. I hope it wasn’t a one time off thing. So I tried again today. And again, he walked, confidently, didn’t even bother looking for support with his other hand. However, I noticed that he was only strong when his right hand was held, not his left. Which means, well, mummy’s job is clear for the next few days…

Gabriel hates spoons. He hates food in his mouth. If there was any piece or crumbs in this mouth, he would try to spit it out or remove it with his hands. He accepts only bottles. There are certain food that he can quite tolerate – chips, cookies, bread. He chewed on them very slowly. A cookie can last him a very long time, hours. Nowadays, if he decided that he can eat those food, he would chomped them down to bits in the matter of minutes. When I place food into his mouth, he would now open his mouth wide open, his jaw ready to munch the food down. It was such a pleasure to see. Such big movement.

Gabriel can be quite noisy. He likes to make noise just for his own amusement. He could easily be mistaken as autistic, as he could seem to be in his own world, uninterested in other people. This has changed. He could be as noisy as he normally is, but more and more often, he would also catch our conversation and repeated a word with such speed and accuracy, that would stop our conversation. He is alert to any sound we make. When a sound interests him, he would repeat it. More than he had ever done before.

It seems like Gabriel is improving in his overall body coordination – mouth, hands and legs. He also seems more present. I looked back to my previous blogs. It seems that he had gradually come to this since he started his stem cells treatments. Everything that had seemed vague initially, had accummulated. Now, although all the changes are still considered small, they had appeared more real to me.

Gabriel is due to kindergarten this coming September. It had completely slipped my mind to think, to check out schools and options for him. It was something impossible. This afternoon, a mom questioned if Gabriel will be going to school. Normally, I would answer no as it was obvious that he can’t. He doesn’t even walk yet. No motor skills. Can’t even put balls into a hole.

But today, for the first time, in all honesty, I suddenly saw a little hope. A possibility. Feasibility. For the first time, I told myself to check out the schools for Gabriel. And had actually felt that I should check out the schools. Ridiculous as it may seem, I actually had a surge of confidence that Gabriel will start his kindergarten in September. Right on time, as it should be. May be, who knows, he will be ready in 3 months time? I really hope he will be. Really. I am also so afraid that I would be wrong. At the same time, what else could be wrong when he is moving on the right direction? Whatever will be, will be, right?

Best regards,
Asty
astychow@yahoo.com

Gabriel had his last stem cells last week. We are now back at home. It’s been 3 days now. All had gone on very well. I didn’t update the blog as I am struggling to come up with a summary of our experience in China. I couldn’t decide on the conclusion, whether Gabriel had benefitted from the treatment or not. I have mixed feelings on reporting what I have seen as improvements. As usual, the improvements are little.

The day before we left, Gabriel went for his last therapy at the hospital. He had missed out a great deal of sessions. He had only been to the therapies 3 times, during his 4 weeks stay at the hospital. That day was his fourth time.

The therapist had found a great change in Gabriel. If we recall back the first time, he had a screaming, hyper sensitive child in his arms. That day, we were both astonished to find a calm, cheerful, very receptive child in the therapy room. Never would I had imagined that I would see Gabriel, my Gabby, lying there quietly, relaxed, and let a stranger touched, pulled, stroked and massaged him. He sat on the physio ball, apart of his usual drooping head, he sat erect and straight, balanced, without support, moving to the rhythm of the swaying ball. This was the first confirmed change by a professional, confirming all the observations I saw and doubted before. At the same time, rulling out familiarity as the factor in his improvement. The therapist, believing in his therapy technique and Chinese medicine, kept insisting that, should Gabriel had received more sessions, his improvement would have been much greater. He was confident that Gabriel will hold his head high more.

Then, on the way out of the hospital, during our journey to Beijing, my friends and I noticed that Gabriel held his head high up quite frequently. He tilted his head in such a way, as though he was listening and paying attention to a particular speaker. We did some vision game, and he reacted in a surprising quickness, searching, then a jerk of his head, as though surprised by the hands thrusted in front of his eyes. We all gasped. There were three of us. Each of us tried the game on him. Each time he reacted exactly the same way. May be, just may be, there was something there. May be we had all been imagining again. I am not sure, but will continue to try playing with him more. Who knows?

Other changes in him were that he learned and repeated words and gestures faster than usual. He wasn’t afraid of strangers. Basically, he no longer curled up into a ball in a new environment, and held himself straighter than before. This is the new Gabriel. I am discovering and learning to know this new and a more interesting boy.

The doctor told me that since he had started to respond to the treatment, hopefully, we will see more results in 1-3 months time. Stem cells move to treat the first and foremost serious weakness in the body first before moving to other areas. May be Cerebral Palsy is what the stem cells are treating now. Hopefully, when this is helped, it will go on to his vision. Furthermore, there is hope that, the reason why he can’t see, could be because of the cerebral palsy… Who knows?

Then again, am I hoping too much and see too much when it was in fact a ‘nothing’? Obviously, my husband didn’t see that much change in Gabriel. That is the main cause of my still undecided conclusion on Gabriel’s development. However he did see that Gabriel is more responsive and alert than before. And, what’s more important, and a constant pillar for me, he has more patience than me in waiting for more results in our son.

Go, go, stem cells. Go and do your wonderful job on Gabriel. And again, a little reminder to myself, be patient.

Best regards,
Asty

We had been very lucky. Our Beike representative, Jeevan, was in town and visited us. We talked a lot. Especially in helping me with my unstable emotions over the stem cells treatment. Jeevan is the grandfather of Shirdesh, a 2-year-old boy, the first case of ROP to receive the stem cells treatment at the same centre in December 2008, also by the same doctor, Dr. Zhang.

Thank you, Jeevan!

Jeevan reported that Shirdesh had his retina check recently. His ophthalmologist had a surprise. He had found new growth of healthy blood vessels in his eyes. He also found that his scar tissues are reduced in size. Needless to say, Shirdesh had changed his family’s life completely. He follows and copies movements, sees his own reflections, watches TV, etc. A big step for a ROP 5 boy!

Yesterday, with the help of a proper translator, Frank. I finally understood what Dr. Zhang had been telling me. All this while, I had thought that Dr. Zhang told me that stem cells couldn’t help the retina. I had asked him three times, and yet each time, I managed to misunderstand him. Thanks to my terrible Chinese.

In fact, his opinion wasn’t much different from the other ophthalmologists. Retina disease like ROP, in the advanced stage of ROP 4 and 5, has no cure, at least, in the conventional medicine. He believes that stem cells is the new method in helping ROP. How far it will help, depends on the patients’ medical history, the condition of his disease, age, etc. Just like the acupuncture. Hospitals in China treat patients with acupuncture in parallel with the conventional medicine. Same for the hospital where we are now. The Chinese doctors believe in its effectiveness. Yet, there is no scientific explanation on how it works. Same to his believe in stem cells.

Today, Gabriel is still sick. This time, he is in an early stage of brochitis and cold. Me too. Thanks to Gabriel. We had been quarantined to our room, for a week now. He had also missed a week’s worth of therapies. All because he had a fever earlier this week, than as a precaution in preparation for the stem cells treatment, and then now, new sickness.

I saw new changes in Gabriel. Not in his vision, but his general comportment and communication. I am afraid to list them down as once again, the changes are subtle.

His next and the last stem cells treatment will be on Monday, by IV. In less than a week’s time, we will be back home. Funnily, there is a bitter and sweet feeling about leaving this place. We just said ‘goodbye’ to our new found friends from Ecuador, Maria and Juan. I will miss them terribly, especially during mealtimes, where we mostly shared our moments together.

Asty

The previous spinal injection was horrible. Gabriel had thrashed and screamed terribly, very terrorising. He couldn’t be consoled as he wasn’t himself. He was conscious and yet unconscious. I had then wondered what had happened to him. I had since read quite a lot about the drugs used in sedation.

Gabriel was given Chlorpromazine and Promethazine. This valium type of drugs give calming effect, and could also cause hallucination, as well as psychiatic side effects. I understood it as, if Gabriel was going to hallucinate the next time, I hope to help him to a sweeter dream, instead of a demon-chasing, traumatising one.

This morning, Gabriel was being treated in his own room, which was a good start, compared to a strange foreign treatment room he was in last time. He was comfortable as I made it a point to play with him a lot. He laughed and was very cheerful before the start of the treatment. I then climbed into bed with him, held him, played with him, sang to him, while he held on to his ‘doudou’, and the nurses and doctors worked on him.

He protested in his usual way. But not violently. By the time we realised the drug was injected, he was already half way sedated. A few minutes later, he woke up as expected for the ‘screaming’ episode, except that his time, he didn’t scream, instead, just a normal protesting cry and then quickly calmed down. I was so glad. He wasn’t terrified this time. The stem cells were injected smoothly and successfully via spinal tap.

As like before, he woke up about 3 hours later, dozing on and off. This time, again he wasn’t tensed or fought the demons like last time. Instead, he simply opened his eyes, cried a little, then quietly went back to sleep. Throughout the 6 hours of sleeping time, I played soft soothing classical music in his bed from the ipod. It was consoling to see him sleeping peacefully, hardly stirred. A big change from the previous experience.

Once again, once he was fully awake from his long sedation, he cried. Well, this time, I knew. It was for food. Just like before, he had huge appetite. He finished 3 complete bottles of his milk. Emptied and clean. In a mere 2 hours.

He is doing well so far. Temperature is at 37C. We will continue to monitor him. He is happy and content now, in his bed, surrounded by his toys. I hope we will have a good night sleep tonight. That’s something I still haven’t learned to control. Last time, the night was a torture. This time, well, we will see…

Best regards,
Asty

Tatyana is a little girl of 5 who received her stem cells treatment in Qingdao, China, in February. She is the reason why Gabriel is here now in China. She is our inspiration, our miracle. She keeps my hope going for Gabriel. I couldn’t feed you with good news on Gabby, but we can all borrow some strengths from her: http://blog.stemcellschina.com/tatyana/

Gabriel didn’t have fever since yesterday. He still coughs a little bit, and I still continue to give him the cough medicine deligently, aiming to get rid of it completely, as soon as possible.

Tomorrow Gabriel will have his spinal injection, his fourth treatment.

Best regards,
Asty

Dear all,

Gabriel is better than yesterday. He ran a bit of temperature last night. This morning, he was at 37C. We will continue to monitor his fever today. His runny nose is under control. His coughs are still ongoing, but small and occassional. He is on cough and cold medicine and sleeps a lot. This means that, tomorrow’s stem cells treatment will be postponed. He needs to be clear of fever for at least 48 hours before going for the spinal injection. I agreed with the doctor totally. I was worried that they would want to continue on with the injection. Phew! At the same time, I am now worried about our departure date from China. I hope we don’t need to postpone our flight home, which they assured me, highly unlikely, unless Gabriel fell sick again.

I found my brain this morning. It was churning with questions and then it worked out a pattern. Listen..

Here at the international ward, various nationalities live together on the same floor. There are only about 9-10 families. We are all vastly different, yet enormously similar. We all came, parents, caregivers and patients, for the same reason. We talked, consoled and learned from each other.

My optimism soared each time they told me how they had improved, the little changes they noticed with themselves. Every single one of them told me to keep faith in the stem cells. It worked for them. Crippled or blind. They were so confident that I will see the change. If not now, tomorrow, next month, not long. I looked at them, and listened to their achievements, big and small, at awe. Then I went back to our room, scrutinised Gabriel, wondered if I had missed something; then I saw something, or was I actually looking at nothing and fancied I saw something? And I saw so many, all very vague. When asked if I had seen any change in Gabriel, my answer was negative. I was glum and exasperated at the same time. But I am not alone. There are 2 other patients whose parents also didn’t see any change in their child after a few treatments. I looked at them and felt as hopeless as I imagined they would feel.

This morning, I had an enlightenment. I came to realise that those who said they had improved were those who can talk and who knew their body well. How stupid and blind I had been? All of those who had seen changes were those who can communicate! Well! Not Gabriel, of course! Not the other 2 toddlers who happened to be at the same age as Gabriel! They can’t talk!

May be, just, may be, there had been changes, so subtle, we didn’t see it. Fingers crossed. May be, may be…

I mentioned to my husband that Gabriel had been poking his eyes more than usual. That was right after the first treatment. He said, it was normal. It was his bad habit. He poked his eyes all the time, even before leaving for China. May be, I was reading too much into it… Furthermore, the doctor had shone light into his eyes when he was sedated a few days ago, his pupils didn’t respond at all.

I understood later from the other patients that, they had pain in their muscles for the ‘crippled’, funny feeling or pressure in their eyes for the ‘blind’. Each, the doctors told them, those were good news that the stem cells were working.

This morning, the mother of a visually impaired adult patient came to me. She and her daughter, Linda, had been a great help to me, in understanding the effect of the stem cells on her eyes. Since receiving the treatment, she can now see large objects. She said, “Linda didn’t have lights perception before. After a few surgeries, she finally can see lights. At that, the doctor shown a penlight into her eyes, and found that her pupils didn’t dilate at all. He concluded that she couldn’t see it.”

“But it wasn’t true! It was because she didn’t know WHAT TO SEE. Unlike us, the sighted people, she needed to be guided, to seek for the object, in order to see, to identify that penlight. She doesn’t see the easy way we do. She needs to find the object. To find it, she needs to know what to look for. When she managed to find it, her eyes focused on it, and her pupils started to dilate. Finding an object to focus on and then seeing it needs practice.”

“What the doc did to Gabriel when he was sleeping didn’t conclude anything! Do not give up hope!” Gabriel needed to be guided.

Well, as you can probably feel, she opened up something in me. Hope. I’m feeling it again. Patience. Not wait and see. Instead, more work with him… We are surrounded by angels.

OK. I admit. Hope is back again. Prepareness for the worse shouldn’t be forgotten. I also know that, there is a patient out there right now, whose parents are more dispirited than ever. After almost a year since receiving the stem cells treatment, their son’s condition didn’t improve at all.

Best regards,
Asty