Gabriel’s ROP Blog

I had a wonderful day yesterday. After a period of hot and humid weather, yesterday was blessed with light refreshing drizzles, nice breeze and cool air. A few ladies and myself set off to a nearby beauty salon and had facial and massages. Great outing. A great break.

Gabriel was alone in his bed, in his room, as it was time for his afternoon nap. A little outing for mummy with the ladies. Except that he didn’t go to sleep right away. Instead he had played for a long time, made loud noises, while actually enjoying and laughing to himself. The nurses came in to check on him from time to time. He was sound asleep when I got back a few hours later. Very naughty of me!

He woke up and coughed. A little. It continued to the night. Little coughs occassionally. Enough to create new creased lines on my freshly massaged forehead.

This morning, he woke up, and coughed, and hot at 39C. Later in the morning, he had runny nose. His temperature was back to normal but we will have to watch him closely. His next stem cells treatment will be on Wednesday. It will be a spinal injection. And we all knew, stem cells don’t like fever. We are both back in the hospital room. No more adventures. Believe me. Neither of us was happy with this arrangement. From the window, the weather outside looked decidedly lovely for a stroll… (sigh)

Best regards,
Asty

Hi there,

Writing this blog is one of my many ways of letting things out, emptying my myself. I need that from time to time.

It was a very difficult morning for me, watching Gabriel being injected with medicine, to sedate him. He thrashed and screamed, making it more painful for me. I know it didn’t hurt as he already had his IV catherer in. Even that, I knew it didn’t hurt, as he had anesthetic cream, and when the nurse inserted the needle, he didn’t even flinch and even laughed as I played him at the same time.

So, the third batch of stem cells was injected into his body, through spinal. He is now sleeping and will be kept sedated for another 6 hours, to avoid any movement.

As for his vision, there is no improvement, not even lights. It is as expected, as stem cells takes their time…

Best regards,
Asty

I am trying keeping positive about things. It is not easy. At times, I questioned THE faith. Questioned the rational of believing in miracles. Questioned my skepticisms. Questioned in Believing. Well, a lot of questions, no answers. Just keep hanging on there. Keeping positive? While perhaps I’m being too realistic and became a little dispirited? Perhaps I shouldn’t have posed all those questions, and just accept it, like I thought I already had? I don’t know. I have my ups and downs, a little lonely with my own roller-coaster emotions. All I know is when there was already no hope, this is the right thing to give to Gabriel, to come here, to China.

I will try to keep the blog going. It’s not easy when there is nothing to report to whet the curiosity on the progress of his vision. Bearing in mind that, Gabriel is not only blind, but has other problems. Bearing in mind that, I came here not just for his vision improvement but his overall development. Also, bearing in mind that, it could take time before we can see any progress from the stem cells – immediately is now out of question, well, then, may be a month after we leave China, it could also take a few months, it could also be as long as a year…

Meanwhile, he is doing really fine. Contented, happy and got all the proper medical care and therapies as he should. And me, try keeping positive. Like my new friend at the hospital reminded me. Thinking positive thoughts will pull positive energies. I will try.

Asty

We heard ‘hello’ and giggles from the room. Gabriel was awake. Happy and well. We had checked his temperature earlier on. All was well. We brought him to the living room where we were watching a movie from the DVD. He quietly listened to the TV, caught the word “me” and repeated it enthusiastically. That’s my Gabby!

A short while later, a nurse came in to check his temperature and pulse. Right after the nurse declared that everything was fine and let go of his arms, he said, “Bye!”. Wow! I was impressed! Oh well, OK, I’m putting a full stop right here. It might just be a coincidence.

Anyway, we waited a long time this morning for the stem cells to be ready. The nurses put some anesthetic cream around Gabriel’s hands and wrists. Again, our room was sterilised. At 11 am, a catherer was inserted to Gabriel’s vein. After a fit of protests and screaming, the stem cells was finally on its way into Gabriel’s blood stream, intravenously. Once he was free of grasps, he calmed down, and played happily all the way through while the IV dripped. Half an hour later, it was done. He had his milk and then was off like a light. (He must had been exhausted from all the crying.)

Oops.. he is off exploring the room again on fours… need to go… Just to wrap it up, Gabriel is fine. More updates later on…

Asty

It’s been 3 days passed since the first treatment. Dr. Zhang had hard time examining Gabriel’s eyes. He had not been cooperative. As usual, he didn’t follow instructions, and didn’t like to be touched by strangers. So, he couldn’t conclude if Gabriel reacts to lights or not.

Every moment of the day, I had been hoping to see something. There is none. No negatives. May be something positive. I might be imagining. Being with Gabriel now is like, well, imagine the speed of the internet – before, Gabriel was like a modem connection. Recently, I feel like I am on ADSL with him. Not yet broadband, but the connection seems faster. That’s how I feel about him. Again, I might be imagining. But he seems a little more spontaneous. He is probably more alert of things said to him and picks up the words and repeats them faster than before. Once again, when one’s thirsty, one can think a mirage is real.

Tomorrow will be his second treatment. I guess, patience, is the only solution.

Thank you for following up on Gabby’s progress.

Asty

After his breakfast, Gabriel got sleepy again. No surprise. It was only 8 am, which was 4 am in Dubai. The nurses came to sterilise our room. During this time, we were ushered out to the common dining room, where I had my breakfast with Maria, the lady from Ecuador, sharing coffee again.

The catherer was still in Gabriel’s hand. Placed there 2 days ago, during blood tests. It had been such an ordeal finding his veins and fighting his struggles that, we thought it best to leave it, to save his misery.

The stem cells arrived at 9.30 am. Gabby had started getting cranky. I tried to put him in bed. Hopefully he will sleep and that he will not notice the treatment being administered. Naturally, he didn’t sleep. And so, well, he was wide awake, very aware, very upset when the nurses touched him. It was painless. But being so sensitive to touch and strangers, it was still unpleasant for him. The stem cells was diffused through intravenous at around 10.50 am. Now that he was left alone, he had quickly calmed down and quickly fell asleep, clutching is ‘doudou’. The whole process took about an hour. That’s it. The little cells are now swimming inside him, going through all the little nooks and corners in his skinny body.

We needed to watch out for fever. He will be monitored for 6 hours. It would be an reaction from the cells going through a strange medium. But not something to worry about.

Gabriel woke up about 2 hours later. Nice and warm. Well sated from his cosy nap. Happy and laughing when I greeted him. It was so reassuring. No fever. We checked again after an hour. No fever. He continued to crawl around, playing with his toys, banging, creating noises, laughing at himself, etc. He finished his bottles of milk twice in 3 hours.

So far so good.

Asty
astychow@yahoo.com

It’s 17.10 on 29 April 2009, I’m quitely watching Gabriel crawling and exploring our hospital room. It’s fantastic to watch. What a progress! What joy! This is before any stem cells treatment. The patient from Ecuador whom I met this morning told me that he felt the improvement right away, right after the first stem cells shot. I wonder what kind of change I will see in Gabriel after the first stem cells injection. I wonder if I will notice any difference or I will be imagining it as I am hoping that it will…

It’s 17.40 and Gabriel has crawled out of the door to the corridor. He’s happily tapping on the cold tiled flooring, so different from the warmer carpet where he was a short while ago. My little Gabby has grown.

He’s three. He should be able to do more. But this is a huge thing for us. I’m so proud of him.

Asty
astychow@yahoo.com

Today, April 29, 2009, is our first day starting out at the hospital. After the ordeal of traveling and then check ups of Gabriel yesterday afternoon, we had a slow start.

I met a couple from Ecuador who has arrived a week ago. We shared my French pressed coffee together. They were so happy because they can’t find coffee in the supermarket, and got themselves only the instant Nescafe Cappuccino that they had to make do with.

I had a conversation with Dr. Zhang this morning who came to check on Gabriel. He wanted to bring us to the rehabilitation department to work out a therapy programme, which will consist of acupuncture, physiotherapy and occupational therapy. Yesterday, he had diagnosed Gabriel with having a mild to medium stage of Cerebral Palsy (CP), after viewing his CT Scan images of his cerebral. Curiously, I was quite emotionless. I was in fact kind of relief to have finally found a name to Gabriel’s developmental problem. It seems to be the key to all his problems.

I posed the question about the chance of success of stem cells treatment for Gabriel’s case. He told me he would expect very little improvement or no improvement, or perhaps we will see some changes after a month, and then if there is any improvement or changes, they will come very slowly and gradually, little by little. However, he expects a better improvement in the problem of CP after the treatment.

I now have to admit that I was disappointed. I asked myself why I am here. But then he assured me that it doesn’t mean that the stem cells treatment for Gabriel’s ROP is hopeless. The hope is there but reminded me not to expect too much. But he was confident that Gabriel will benefit greatly for his CP, which for me will mean his overall development. Am I relief? No. The disappointment is still there. It’s hard to explain. I know his blindness is not ‘important‘. That his well-being, his overall development is more important. But I can’t help having the disappointment that, there will be no miracle to witness. That he will not have the phenomenal experience like Shirdesh who can see his own reflection, the paper, the apple, the cars… Or like Tatyana, as Gabriel’s ROP is more severe than them. However, like Dr. Zhang had said, time will tell. I will try to remain patient and try not to complain too much.. Just accept whatever the outcome is.

Gabriel will start his first stem cells treatment tomorrow. His treatment will consist of 4 IVs and 1 spinal. This programme may change as time goes by.

I am really warming up to these Chinese doctors. They seem so competent and seem to know what they are talking about. So honest about things, doesn’t brag, doesn’t give false hopes, just the facts. If this is a hoax, the whole scenario doesn’t fit. They are genuine doctors who cares and truly believe in what they are doing.

Asty
astychow@yahoo.com

It was April 27 – 28, 2009, an unforgettable trip to Beijing. I had traveled quite a lot, internationally, and never before had I encountered something like this before.

As some of you know, we live in Dubai. We got the cheapest and the best timing flight out of Dubai by Etihad Airlines via Abu Dhabi to Beijing. The plane was full of Chinese passengers. Everything was fine as usual until we were in the plane. Apparently we couldn’t set off because the in-flight entertainment system was down and the airline technicians needed to fix it. Well, it was a 10 pm flight, an 8 hour trip, and I was planning to get a good sleep (if possible), and wouldn’t care less for any entertainment. Nevertheless we were kept in the plane. After 2 hours, we were disembarked, apparently to change aircraft. From then on, things got worse.

We waited in the lounge for hours without any information. After 2 hours, there was an unrest amongst the Chinese passengers. Suddenly we heard a lady shouting in Chinese, giving a motivation speech to her fellow passengers. I believe the message was to tell the Chinese passengers to calm down, to behave themselves, reminded them not to embarrass themselves being the national of China, etc. Another hour of waiting, and then another similar speech from the lady to her fellow comrades.

By the 7th hour, after being told that we will depart in a matter of minutes an hour earlier, there was a sudden commotion amongst the Chinese passengers. A demonstration started, with them chanting “We go hotel!”

By the 8th hour, we were finally told the good news that we will board the plane. It was going to be the same aircraft with the defective in-flight entertainment. What irony!

Having gratefully resettled back into our seats, the plane was still almost empty. There was a demonstration at the departure lounge again. This time, the Chinese passengers were on strike. They didn’t want to depart. Instead they wanted a hotel stay! We waited for another 10 minutes, then we were informed that the flight to Beijing was cancelled. We disembarked again. Having barely slept the whole night, and being told that we can no longer fly to Beijing at the hour when we were supposed to arrive in Beijing was simply too much to handle!

I had sent many messages to Max of Beike to inform him of the changes. But through out the whole time, I didn’t receive any reply from him. I got very worried.

The departure lounge was a complete chaos! The ground staff advised the other ‘innocent’ passengers like us to wait for the same flight in the same evening. At the same time, other passengers were puzzled as the flight the staff promised to put us in was actually non-existence. While the staff assured us that it was on schedule. So, we tried other flights, other companies, whatever, to get to our destination, I.e. via Dubai, via Bangkok…. They found us an Emirates flight from Dubai at 11 am. It was 7 am in Abu Dhabi and it will take a minimum 2 hours car ride to reach Dubai airport for the check-in. Now the stress was to arrive there on time. We also need to through the immigration process again and also to get our luggage out.

They lost my baggage!!! They had pulled it out earlier so that I could get them quickly and leave for Dubai as fast as possible. In the event of doing this, they had placed the baggage in an unrecorded area, and I spent an hour trying to trace it. This time I was in the binge of breaking down. Not only had my original flight being cancelled, I now was going to miss another flight to Beijing. I wonder how I was going to do. I was no longer in the normal process of things and I was totally lost, with a tired sleepy Gabriel around my hips, a laptop hanging on a shoulder and pulling a cabin bag with another arm.

With the help of a few Etihad ground staff, we finally located my baggage. They then informed me that an extra flight was arranged to leave for Beijing at 12 pm with the same airline. While my baggage was on the way to the aircraft, I needed to get a new boarding pass. After explaining the lady staff at the counter of my situation, the kindly staff left, and I waited.

There were a few angry businessmen in front of the queue who had just missed their flights and tried all kinds of tricks, and threats to get themselves back on board. I waited for 45 minutes. Not a single glance or explanation from the ticketing staff. Gabriel and I were invisible.

My husband, Georges helped me to contact Max to inform him of my new flight schedule. A lady from the International Division of Beike will be at the airport to meet us at midnight.

I now started to wonder if there was some kind of message here, that we should not go to Beijing and get that stem cells treatment. Perhaps it was a way of telling me that it will not do Gabby any good. Perhaps it was a way to prevent us from going there.

Then, finally when the time came to board, I was totally exhausted and asked for an upgrade. I was lucky. They let us go to the business class. Perhaps it was a way of telling me that everything will be alright, that we will be taken care of , as like we were at that time. And it was so good to be in the business class. We finally can lie down properly, horizontally. The passengers and cabin crews were very friendly. After a good sleep, we chatted over wine and coffee. It was a good and relaxing time, finally.

These friendly passengers continued to stay at our side, assisting Gabriel and I. They waited to make sure that I got my currency changed. Helped me with the luggage. Walked us to the meeting point to make sure that Casey from Beike was there to receive us. And thank God, she was!!! And she had been at the airport since 10 am?!! She was only informed by the airport authorities that our flight had been cancelled after 2 hours!! Poor Casey! Max didn’t receive any of my message!! And we were very lucky as she continued to try to find out the fate of our flights and found out all by herself that we will arrive at midnight. I couldn’t help but wonder how I was going to cope should I arrive at the airport in the middle of the night, with nowhere to go.

Having thought that God was trying to prevent us from going to Beijing, it seemed that He was taking care and protecting us. It seemed like the angels were there for us.

From Beike’s information pack as well as the internet research, I understood that Shijiazhuang is about 2 hours from Beijing. But it turned out to be a 4.30 hours car ride from the airport. I just couldn’t believe it! The poor driver and Casey had set out from the hospital at 5 am the same day to arrive at the airport at 10 am. They had waited for us until midnight and will only arrive at the hospital around 5 am the earliest the next day. They had hardly slept, totally stressed out, and hardly rested during the day. The driver drove at about 90 to 100 km/h although the speed limit at the highway was 120 km/h. At about 30 minutes before arrival, the car hit and scratched the side of the road. The driver had accidentally dozed off. It was a huge scare that had sent my knees knocking all the way to the hospital. We were very lucky that the car was simply scratched, and that none of us was hurt. Talking about signs and messages from up above… This has really got me pondering..

Asty
astychow@yahoo.com

Since finding the existence of the stem cells treatment in China, thousands of questions had passed through my husband’s and my mind. Is this a valid treatment? Is it a hoax? Is it safe? If it is really working, why is it not known or published internationally? They would have gotten a nobel prize for this. What are the consequences of side effects? We have contacted and seeked opinions from many minds, some are doctors, some are parents of children who had undergone the treatment. The doctors advised us not to go. The parents advised us to go. The progress of their children convinced us to go.

This is the only hope for Gabriel. Apparently, there is zero risk. Or is it too early to tell? We had pondered over sleepless nights. We then decided that Gabriel deserves this chance. He is still young. Time is crucial in his development. If stem cells treatment is going to help him, we think it is better to do this early, so that he will not be furthered delayed in his already delayed development and schooling.

The first day we arrived at the Bethune Peace Hospital in Shijiazhuang on 28 April 2009 morning, Dr. Xing, the ward doctor had come in to visit Gabriel.

Dr. Xing was very patient with me. She told me that she was also skeptical of stem cells when she first heard of it. However, she had seen mice being treated with stem cells, and seen the stem cells’s effects on the mice, their progress and changes periodically, and she is convinced that it works. She had treated many patients with stem cells and it had worked. The stem cells had cured many of her patients. She recognised this as fact.

She no longer asked HOW it worked, as she explained, she is not a scientist who is trying to solve the puzzles and fitting those equations. She is a doctor. When a treatment works, to her, it is a fact, it works, thus therefore, she is using it to treat her patients. She believes in it. She explained that the way the human body works is full of mystery and at times, we couldn’t reason with it. She doesn’t see her needs to seek out more and to understand why it works, because it no longer matters to her. Stem cells treatment works and it is helping her patients and that is enough for her.

Her explanation reminds me of the mentality behind the Chinese medicine. Many scientists tried to understand the effectiveness of Chinese medicine. Many researches were conducted. Many questions are still unanswered. Chinese doctors in China still continue to use this method of treatment on the patients with much success. Not only in recent years but through centuries. They believe in it because they had seen it worked. And that is as real as any fact can be.

Coming back to the stem cells treatment. The doctors here see it in a similar way. It thus is my explanation of why this kind of treatment is being conducted in China but not in other first world countries.

Dr. Xing assured me that, the stem cells treatment will definitely benefit Gabriel. If not the vision, it would in other ways. In this particular morning, this doctor has finally managed to assure me enough. I can finally let go. Whatever will happen, will happen. It is time to open that box of chocolate and see what we will get. Fingers crossed.

Asty
astychow@yahoo.com