The first year of ONH
Earlier this week it occured to me that it had been about a year since our family began the journey that has led to this destination. I felt this was a good time to update the world on Jakob's progress.
It has now been 4 months since our return from China, it almost seems like I dreamt it all now, I still can't believe it even happened sometimes. Our little boy Jake is such a wonderful little baby; although he isn't looking much like a baby anymore but much more like a toddler. We have had him checked by the eye doctor who looked in his eyes, waved a dark brown dancing monkey in front of his face in a dim room and then said "I don't see any change". Funny..... I don't remember this test from before I thought. This particular doctor and I have not always seen eye to eye so I didn't go in with high expectations of her giving me a positive prognosis but I had to check. She did give us a referral for a follow up VEP which is a test that sees how much information is going from the eyes to the brain. Jakob's first time was back in August prior to his treatment, and this last one was 6 months later; for this we still await results (they were supposed to be back in a week and it was one month ago today that we had the test done).
Despite what Dr. Pessimist says I know that Jakob is improved because of what we all had a hand in providing for him, I do not doubt it for a second. Jake is 14 months old now, he is saying nearly 20 words, taking steps, and acting like any one-year-old would. We have begun to introduce new toys and challenges because he is meeting his goals so quickly. What about his vision you ask??? Well again I stress that it is very difficult to know exactly what Jakob sees without him being able to tell me. In addition to all the improvements mentioned in my previous writings he is now saying light and turning towards a "light box" toy from the CNIB, he reacts to it even when the room is fully lit. He will stop what he is doing turn towards it and reach for it while saying light. I don't know what other proof I need. However small that may seem to some it is a miracle to us because he could not see light before, Jake wouldn't even react in the black of the night when I turned a light on suddenly. Sometimes I think he is looking at me, he squints, strains, and still does things I think he couldn't know without seeing, like waving and blowing kisses. We are thrilled with Jake's progress and we have an aide working with him for 10 hours a week and he participates actively in music therapy where he plays piano, drums, and guitar. Do not be surprised when he grows up to be a rock star.
On Friday February 13, our family welcomed Jaxon James Eugene. He is the thirteenth grandchild, born on the thirteenth day, in the thirteenth hour, and he and Jakob are 13 months apart. We believe he is our luck charm and a gift. We saved his cord blood in the hopes that we will one day be able to use for Jakob's treatment, and we hope that he and Jake will be great friends and that Jaxon will help him along in life when he needs it. As a mom I think it will make me feel better to know I haven't sent him out there alone, he can have his brother by his side going through the same challenges at the same time in life. Jake has been very receptive to his new brother and loves giving him kisses and hugs.
This week President Obama reversed the ban on stem cell research in the US that had been put into place by good ole' George W. This is a great start but it will take several years before people are getting treatments. I also must stress that the research being done is for Embryonic Stem Cells, not Umbilical which we used. I believe the risks involved with Embryonic are still far too frightening, but I think they will straighten it out eventually. I strongly believe that there will be a cure for ONH in Jakob's lifetime, and I know it will come from stem cells.
I will update again soon.
God Bless
Dawn
Jakob Turns One.... December 30, 2008
I know many of you have continued to check our site for updates on Jakob since our return from China and I am sorry that I haven’t taken the time to write. Time seems to have been flying by since we got home; we spent the first two weeks trying to reprogram our sleep schedules and get back into the swing of things. Since then we have been working really hard to put all of the therapies and doctors in place for Jakob so that we can ensure he is getting everything he needs.
Jakob turned one year old today; it is hard to believe all the things the last year has brought us. If anyone had told me at the beginning of 2008 that our family would experience all that we have over the past year I would have told them they were crazy but alas here we are.
Many people have contacted me since our return looking for updates on Jakob’s progress; the media, friends, family, and friends of those of you reading this. Progress has been slow, the improvements Jakob has made have taken time to come to the surface and it’s also really difficult to gage just how much should be credited to the stem cells. It is also hard to remember where Jake was at before we left for this trip, especially when you see him change right before your eyes on a daily basis. Being patient during the past 2 months has been the most difficult part, but I have tried to concentrate on working with Jakob to teach him all the things he doesn’t learn because of his visual short comings.
With that said Jakob is doing amazingly well. When we left for China we had a little baby who was 9 months old and was behind “normal” children his age in nearly every possible aspect. We had all the tests done to prove that Jakob had no visual response to anything and therefore confirming his complete blindness. We now have a 12 month old baby who is behind “normal” children in the way of mobility but right on pace in every other way. Children who have no vision are expected to be quite behind developmentally but Jakob is now right on pace with most other kids his age. He says about 10 words, gets on all fours by himself, plays with his toys, can find his own nose and mouth when prompted, claps his hands, plays pat-a-cake, sings E-I-E-I-O, etc. He can also mimic almost any noise you make without being able to see how you are making it. He amazes us daily with all the new things he seems to do. The thing is that most kids at his age are developing faster than at any other point in their life, so how do we credit it to the stem cells??? It is difficult but at the end of the day it really doesn’t matter why he is developing so well, just that he is.
We know that Jake is a very different little boy than the one we took to China 3 months ago and all the changes in him are positive ones. The improvements we were really looking for of course were visual ones and those have come much slower than I anticipated. You all know from reading my previous blogs that Jakob began reacting to light being turned on and off in a room, and also that he had pupil dilation for the first time while we were in China. We understood that we needed to wait 8-12 weeks to see the full extent, and we are still in that waiting period until the end of January. Also we are waiting for a Ophthalmology appointment in early February to confirm any changes as it is difficult for us to speculate when Jakob obviously can’t verbalize any changes he might be experiencing. With that said though we know that there have been visual improvements above and beyond those that we saw in China. I have tested Jakob in several different ways over the past 2 months. We bought bright balls with a flashing light in them and a friend also gave us another toy with a slightly less bright light in it. I have waved those in front of Jakob’s face many, many times over the past while and never have we gotten a response of any kind. Just a week ago though Jakob started to look at the ball and then grab it with his hands, we of course tested this several times, and each time he reacted the same way. Richard and I were so excited, it was the first time Jake had ever reacted to something so close to his face and it gave me great hope that this was not the end of the changes we would see. The Calgary Sun came to do a follow up story on Jake in December and while they were taking his picture Jake began rubbing his eyes, squinting, and turning away; obviously reacting to the flash from the camera. I was so happy that he reacted right in front of the media and they reported it in their story as Jake made the front page for the second time in his short little life. We also see Jakob squint and it sometimes seems like he is trying to focus on things but without him telling us it is really hard to know for sure.
That is where Jakob is at for now. We are happy with his progress and I definitely believe that the stem cells were not a “hoax”, or a “modern day snake oil scam”. No one can deny the fact that my son could not see at all and now he is seeing something. The stem cells have worked for Jakob, and I am considering taking him to China again in the next couple of years for another round of treatments. As I stated in a previous blog; Jakob’s progress cannot be erased and if we went again I have every reason to believe that the stem cells could only help him further.
I will write another update in February after we see the eye doctor. Thank you all again for keeping Jakob in your thoughts and prayers over the past months, our family wishes you and yours all the best in the New Year.
November 5, 2008-Saying Goodbye To China
It is officially over. In 11 hours we will leave the hospital we have called home for the past 34 days and board 3 airplanes over twenty some hours until we land back home in Calgary to our awaiting family and friends.
It has been a wonderful journey, I think back to all the effort it took to get us here and it is hard to believe that it is over. A lot of people had a hand in getting us here, many of you have sat by your computers over the past month waiting for an update to come from China, so many of you have prayed and wished for miracles to occur for our son. It is still so surreal to me that we are even here in
I firstly want to say that we are so very grateful for the people in our lives who have supported this crazy idea from the start, for all of those strangers and friends who believed along with us that this just might be possible. You came to events, brought your friends, spread the word, and wore those little blue bracelets in support of a little boy that some of you didn’t even know. Jakob has touched the lives of far more people than he will ever know, and in return all of you have touched ours. Jakob has a spirit unlike any I have ever seen, I know that he is a miracle and he will continue to be, he will defy the odds, and he will prove the naysayers wrong; I feel it in the depths of my soul. My little boy who hasn’t even been on this earth for one year has already changed history. He is the first person with ONH from
We also want to let the world know that this experience will never be regretted, and I know without a doubt that if we had chosen to do nothing my life in 10 years would be filled with regrets. Jakob has already improved from this treatment, and in the coming months more changes are sure to happen. No monetary value could ever be put on this gift that our family has received, Jakob will benefit from these small changes for the rest of his life. Whatever improvements that have come, as well as the ones that will develop once the stem cells have had the time to work to their full extent will be permanent for Jakob, his optic nerves will not un-develop.
The staff on the 8th floor of Chengyang People’s Hospital has been fantastic to our family. The staff here loves Jakob and it will be difficult for many of them to say goodbye to him in the morning. Jakob has touched their lives just has he has touched many of you reading this, he does it in the simplest ways; a smile or giggle of excitement, or a cuddle on their shoulder is enough to make them fall in love with him. The nurses all call him by his Chinese name which is Jakob-bo, he has several visitors every day just wanting a moment to sing him a song or hold his hand. Dr. Bing gets tears in his eyes when he talks of how Jakob reminds him of his own son that he does not get to see often because he must work so far away from his family. The staff here believes in the work that they do and that makes a really big difference especially when we have come from a place where no one in the medical field gave us any encouragement at all.
I am so excited to get back to my daughter and my life in
Thank you all again for your support and prayers and I will see many of you in just a few short hours. Home Sweet Home.
October 29, 2008
8 more days!!!!! Our trip home is getting closer and we are very excited, none of us can wait to get there. We have made some great friends with the other families that co-exist with us here in this ward. We really only have each other to talk to and over time we have learned so much about one another. Now we watch them one by one walk out the door and head home. Today our favorite family left and we are all wondering what we are going to do for the next 8 days. Only 2 more leave before us now, but our turn just can’t come soon enough.
Jake had his fifth treatment on Monday and again responded differently than the time before. Once the anesthetic wore off Jakob returned to himself immediately. He was very happy and playful, and has no problem at all staying still for the required 6 hours. I never would have dreamed that Jake could have tolerated this so well at such a young age but he has done exceedingly well. Richard asked Dr. Bing why the reactions seem to vary from treatment to treatment, and he really couldn’t say for sure. All the factors are the same; the stem cells come from the same facility, they are administered in the same way, with the same amount of anesthetic. He said that most patients have had varied responses to it though, and it seems harder for the adults here. No one in our ward has suffered from even a headache except for one adult, who maybe didn’t stay flat on her back as long as she should have.
On Tuesday morning the group of doctor’s came in again to test Jakob’s pupils and Dr. Bing had me show them all the video of Jakob’s light response. Once they saw that they took him into a dark room to test his pupils. Wendy (one of the translators) emerged with her thumbs up saying there was a “DEFINITE pupil response in Jakob’s right eye. Richard and I of course were thrilled, we had already suspected a change but we didn’t want to make anything up so having the doctor’s confirm that was wonderful.
We are really happy with the way everything has gone, and we continue to believe that we did the right thing in bringing him here. I have been browsing the web out of boredom and continue to come across several stories with pessimistic attitudes towards this treatment. I feel so frustrated by that still, especially now that I have been here and I do know what it is like. The media uses phrases that insinuate that families are making up the changes they see in their children, that the placebo effect is to thank. It makes my blood boil and reminds me that my work here is not finished. I still have a lot to do to spread the word and let people know that the Chinese are not performing a hoax, these people do care, they have tried to report their findings, this treatment was tested on animals, there was a clinical trial, and if they really cared to listen the information is available. It is like when you speak about stem cells all people hear is the word stem cell, they do not hear the very important, differentiating word that comes before it and that is Umbilical; they quickly jump to the conclusion that this is the same as Embryonic, or Adult stem cells and then they stop listening. Their opinion on this matter was formed long before I even opened my mouth. I have followed blogs of people who have commented on the news stories that we have done back home and I have fought the urge to write back each and every closed minded know it all on there. On our CBC story a so called PHD commented 10 times, with each response filling the maximum allowed by the website. Each comment was negative, and rattled off a bunch of information that was mostly unrelated to Jakob’s story. My question is if you really are a doctor, do you put as much energy into your own patients, or on researching matters prior to commenting on a story 10 times from a family you have never met and know absolutely nothing about other than what you saw on a news story for 5 minutes. I have received care in Canada, and somehow I doubt it.
When we return home this is not over for me. It does not stop with this trip. It is my responsibility to take this further and fight for all the families in Canada who should be able to get this treatment if they so choose without having to raise tens of thousands of dollars to get here. I will push to have the research done; I will do whatever I have to until all the people with disorders that have been told there is no cure don’t have to be told that anymore. Here alone in our ward there are several people who were told that, some with ONH, SOD, Cerebral Palsy, MS,Ataxia, Batten’s disease and Spinal cord injuries just to name a few. Think of how many people in our country alone suffer from those things, imagine that one of them is you, or someone you love and then imagine being told that there is absolutely nothing that can be done for them, some of these disorders are progressive, some are fatal, and there IS something that can be done.
That is my rant for the day. Jakob has had his final treatment moved up to Friday, and then we just wait to come home. I will write again in a few days. I can’t wait to see you all.
October 27, 2008
We are coming down the homestretch….. just 10 more days until we board a plane headed home. I am so excited to return to our normal life, drive my daughter to school every morning, do laundry, wash dishes in a dishwasher, sleep on my pillow top mattress, eat a steak, and kiss my daughter good night. I really never gave how good the life I have is a thought until I was on my knees scrubbing my family’s clothes clean in a plastic tub with a washboard, and cooking meals on hot plate or a toaster oven. I will come home a changed woman; seeing life on the other side of the world has taught me appreciation for even being born in Canada and how fortunate we are for the lives we have.
Jakob will have his fifth treatment tomorrow afternoon. His fourth was this past week and it went ok, but different than the spinal before it. Jake was not suffering through hunger as much as last time because they gave him glucose earlier which helped the whole process go much smoother. When we could finally feed Jake he ate his bottle and drifted off to sleep only to wake up several times whimpering, and was sweating. He didn’t have a fever but we had the nurse check his temperature, heart rate, and oxygen levels anyway just to be safe. When he kept waking up we got Dr. Bing who was on call that night and had him take a look at Jake. He was fine, but had just reacted differently this time and we wanted to be sure that everything was alright. Jake went to sleep after that for the rest of the night. Through both of the spinals we have been fearful of him getting spinal headaches which are one of the few side effects from the treatment. We have managed to keep Jake on his back for a good 8 hours longer than the required 6 hours because he is asleep and so far he has not suffered through any headaches, or fevers. Jakob was really tired the day after the treatment, he slept through much of it but started to return to his regular self the following day.
The doctors have continued to come in daily and test Jakob’s pupils and ask us if we have noticed any improvements. We really have not had much more to report since the last entry I wrote which has taken the wind out of our sails at times. Dr. Bing sat with us in our room today for quite some time and I asked him a lot of questions. When Jake is tested it is done in our very bright room with a bright light and I feel that they aren’t getting the best response due to the brightness, I explained that if they tried testing him in a darker room perhaps we would be able to see more definitively if there is any pupil dilation or not. Richard and I have tested him and we do see a small improvement, his pupils had virtually no change in size from light to dark prior to coming here and now we do see a difference, but we want the doctors to see it too. Dr. Bing also explained to us that the immediate changes that we do see in Jakob are a stimulation of his existing cells, but that regeneration of the cells actually takes 8-12 weeks. This coincides with the many stories we have heard while we are here. It seems most families see a difference almost immediately, just like we did and then it seems to plateau until they are home for about a month and then the real results begin to show. This has restored our hope, we need to be patient, Jakob has tiny little optic nerves that did not form overnight and will not heal overnight. It is also difficult that Jakob cannot tell us himself what he does or does not see, and Dr. Bing also says that Jake will not immediately understand or know how to process what he sees simply due to the fact that he has lived his life thus far in darkness.
So with Jake’s fifth treatment today and final one booked for a week from today I also questioned the doctor about changing his schedule a little bit. I would like Jakob to have more time than 3 days to recover before we fly home if possible so they may bump up his last treatment to Friday after he consults with the other doctor’s and they decide what is safest for Jakob.
Other than that life goes on over here in China, the days slip by quite quickly, I just hope it stays that way. I will write again in a few days and update you all on how Jake faired for treatment number 5. We will all be so relieved when the IV’s and needles are done and Jake can just be Jake, although he has really tolerated it like a trooper. The people here really do love and care for him so much as he continues to be the youngest patient by far on the ward. We will miss the care of the nurses and doctors here; it will be difficult to get back to the fight we call health care in our country. We are treated like royalty here, anything we need we get, and the care comes swiftly, but I guess it would in Canada too for 30 grand.
Another update!-October 20, 2008
Well here we are at the half way point of our trip. In 17 days we will again pack our bags and head back to the home we all miss so very much. It doesn’t seem to get any easier to be away from everyone, but it is so nice to hear how happy the people back home are to hear my voice when I call.
Jakob is now also at his halfway point. He has completed 3 Umbilical Stem Cell Treatments, with his last one this past Friday. He has had 2 by IV and one Spinal, with 3 more Spinal’s to come. The transformations in Jakob have been nothing short of amazing since we left home. Richard and I are still trying not to look for differences in Jakob, however they have become too much to ignore. We discovered that after the IV treatments Jakob tends to have many changes in his physical self.
Before we got here Jake would flip from his tummy to his back, or vice versa, but didn’t ever really roll to go anywhere. He only played with toys when he was sat up and had them put in between his legs, and would never search for them on his own. Jakob also held his head down most of the time, as is normal for most people with ONH. Jakob now holds his head up most of the time, and even turns in the direction of the person talking to him, he sits completely unassisted with improved balance and control and he is even finding toys all by himself. He now rolls over several times in a row in both directions, and is even holding his own bottle. To the average person these things would all seem so normal, but for Jakob they are huge milestones that he never met before now. It seems a lot for a child to learn in 2 weeks by coincidence, we can’t help but believe that the stem cells have had a hand in it.
Jakob had his only Spinal treatment thus far last Monday. Wednesday night we were getting ready to watch a movie and dim the lights when the most amazing thing happened. Jakob was lying on our bed while 2 overhead lights shone above him, as well as a small light on the back wall, I then went and shut the overhead lights off and heard him let out a huge gasp of excitement and start kicking his legs and giggling. I stopped for a moment and tried to process what I had just witnessed, then I turned the lights on, and then off again a moment later. Jakob had the same response again. Not wanting to invent any wild conclusions, we waited patiently until the next night when the sun went down again. We put Jakob again on our bed with all the same lights on and Richard went and turned the overhead ones off. Jakob reacted the exact same way he had the night before!!! We were ecstatic but looked at each other in disbelief, was this really working?? We tested Jakob 20 times just to make sure we weren’t imagining things and each time he reacted the exact same way.
Now for as much as we had hope and faith, and believed that this was as possible as anything else in the world, we also have had moments of doubt. I have stood by my son watching a baggie of fluid go into his body and wondered; How do I know if these are even stem cells?? You just don’t know, you put all your trust and hope and faith into these people and wish for the best. It is really all you can do. I now feel a renewed sense of faith, I believe that this is so possible that I could scream it from mountain tops, but I need to hold back and control myself just a little bit.
The full extent of what this can do for our son will not be known for months, but seeing even the smallest amount of progress has made this entire process worth the time, effort, stress, and tears that it took to bring us here.
Jake’s next treatment will be this Wednesday, Tuesday at Midnight to all of you Calgarians, so please say a little prayer before you rest your head Tuesday night and maybe we can keep the miracles coming.
God Bless. Thank you all again for your support, and please keep the emails coming.
Oct 15, 2008
Today is 22 days from the day we get to return home and as anxious as I am for that day to come, we have become more accustomed to our temporary home here in Qingdao.
On Friday Dr. Bing took Jakob for another MRI just to try and give us the answers we have so desperately wanted for months. He compared the MRI with the old one and had another doctor take a look at it as well. On Monday morning he met with us and showed us Jake’s scans picture by picture and told us that the two MRI’s were virtually the same but there were a few differences. On Jake’s first MRI the report stated that there were 2 small cysts in Jake’s brain, then Kirshner (a representative from Beike) phoned me and told me that there were 2 large holes in his brain, one the size of a plum and the other the size of a grape. Dr. Bing could not see evidence of any cysts let alone any holes in the second MRI which I am thinking would be hard to miss if they were there. In the first MRI the report also showed that Jakob was missing his Corpus Callosum which is a midline piece of the brain responsible for communicating from one side of the brain to the other, as well as for balance and cross-over skills. Dr. Bing showed us that part of his brain and while it does seem to be missing at the top of the brain the bottom is actually quite intact and the doctor says there is no reason that the strong part couldn’t make up for the weaker part. This is already quite apparent in the way that Jakob transfers items from one hand to the other, as well as to his mouth. We will not know how good his balance is until he gets a little older and begins to walk but so far his balance appears to be ok when he is sitting, as he holds himself up well and can even regain control when he starts to teeter to one side or to the back. About 2 weeks before we got here Kirshner had called me at home and told me that they would no longer be treating Jakob as an Optic Nerve Hypoplasia patient but rather as a severe brain injury patient, that left us feeling very confused about everything. All of a sudden everything we knew about his disorder and the reasons we had for coming to China were in question. Dr. Bing has now officially diagnosed him with ONH and Cerebral Atrophy. Cerebral Atrophy just means that you have deterioration of the brain nerves or cells which is sometimes associated with progressive disorders like MS, but for Jake the news is good. All deterioration that he has took place due to the hemorrhage and there is no reason to believe that what ails him is progressive. ONH is a disorder that will not get worse over time but can actually improve slightly over time for some patients.
Finally a diagnosis!!! That alone is worth the world to us over here, but reminds me again of how frustrating our medical system is. Having a diagnosis seems to have lifted our confidence back to where it was before his diagnosis was in question, and we can just concentrate on Jake’s treatments and success at them.
On Monday Jake had his first spinal treatment which was much more frightening for Richard and I than the IV treatment before it. They came in and gave Jakob an IV and then wheeled him down to the OR where they injected him with syringes of anesthetic and he very quickly drifted off to sleep. Then Richard and I had to just sit and wait while they scooped Jakob away for only 30 minutes, which felt like an eternity to us. It was so surreal in that moment to think of all the little moments that brought us to that point; I couldn’t believe how scared I was even though it was all I had worked so hard for. We sat in this room that was painted so blue it was nauseating, and shared our fears for Jake, we all held our breath and waited until we saw him again. Jake was awake but groggy when they brought us to him 40 minutes after we left him and he looked just fine. Jake couldn’t eat for 6 hours prior to the treatment or for 4 hours after which is a long time for anyone, but especially for a baby who you can’t explain your actions to. When we got back to our room Jake was very hungry and cried for an hour and a half straight as we sat beside his bed trying to comfort him without picking him up. He had to lay flat on his back for 6 hours as well to prevent a spinal headache which I absolutely did not want for him. The nurses eventually gave him some glucose through his IV and that settled him until he could eat a bottle. Everything went really smoothly, just as it was supposed to. Jakob woke up happy and alert, and completely himself the next morning.
We have tried not to look too hard for immediate changes in Jakob. We all realize that this process is going to take time, month’s maybe before we know how well it has worked for him. It is hard to know if some of the changes he has already made should be credited to the stem cells, or if it is just natural occurrences. Rena was taking his picture the other day and we ended up taking 5 in a row because we noticed that he reacted to the flash which he had never done before. Jake is also much more vocal and mobile than when we left 11 days ago. He is saying “Gack” over and over which must mean something to him but I am unsure exactly what, I thought maybe he was trying to say Jake, cause he hears it a lot. He still does not say Ma Ma….but is saying Dada like crazy….of course. He also rolls over and over all along our double sized bed which he never did before we got here.
I will stay reserved though and try not to get too ahead of myself, time will tell what these treatments can do for Jake, and I don’t care to invent any of them myself.
You will all be happy to know that I have not starved to death as earlier predicted. We found an American section in the grocery store and we started trying to cook more of our own food. It saves a lot of money and we know what is in everything. Today we even ventured into the big city and ate at McDonald’s. Big Mac’s taste exactly the same here, which is about the only thing I have found yet!! We all craved and missed our Thanksgiving turkey and pumpkin pie, but mostly I missed Reagan. It is getting difficult to even speak to her without crying these days, especially on special days that we have never been apart for before this.
Many of you are in my thoughts and I miss you all so much. We are staying strong and doing very well. Time is slipping away rather quickly now and it won’t be long before we are all sitting in my living room talking about our experiences.
Jake has another IV treatment this Friday, I will write soon. Please send me emails as it helps pass my days, and I would love to hear what I am missing back home other than the waste of an election that pissed away more of our hard earned tax money.
Cheers!!
We made it!!!!
Hi everyone!! I know many of you have been checking the site waiting patiently for an update on our journey thus far. Unfortunately the Chinese government blocks many websites and the site that I use to update Jake’s page has been chosen as one of those lucky sites. A great friend is taking my words and posting them so that you all can keep up to date.
Well the flight to China is a very, very long one. I thought we would fly straight over the pacific but the route actually follows the coast all the way from Vancouver up to Alaska and along the Bering strait then along Russia to Beijing. The flight from Vancouver to Beijing was about 11 hours long and I didn’t sleep a wink. When we arrived in Beijing we were surprised how clean and even immaculate everything was. We had to take a subway to pick up our luggage and although we had 2 hours from the time we landed to the time we took off to Qingdao we almost missed our flight. There were several terminals which were quite far from each other, people are very pushy here and we are nice Canadians who wait in line so needless to say we had to knock off the nice rather quickly if we wanted to get anywhere. We ended up almost missing our flight, and the plane was held up waiting for us to board. The people at customs made a big fuss about the baby food as I tried to explain in a foreign language that I was travelling from Canada. We made the flight though and landed in Qingdao an hour later. By the time we got to our hotel and checked in it was about 9pm Sunday night here, we left Calgary at noon on Saturday so it was a bit strange. We were all exhausted and went to bed only to wake at about 4 am.
We all got our stuff together and went for a buffet breakfast at the hotel; we were hoping for bacon and eggs but instead had several covered dishes of mystery items. I found what looked like French toast and took 3 slices in excitement only to find they had no syrup and that it was filled with strange jam type stuff and really wasn’t very tasty. I instead opted for rice and broccoli for breakfast. We then went down to meet Clifford our driver who would take us to the hospital for the first time. As soon as we arrived we were met by several Chinese nurses who ooohed and aahed over Jakob’s blue eyes and blondish red hair. We were taken to our room and Lucy (our interpreter) gave us the tour. On our floor there are many other English speaking families from the U.S.A, Ireland, Australia, New Zealand, and South Africa. These families have children who suffer from many different disorders, we have heard many stories that have made us realize more and more how lucky we really are.
It didn’t take us long to get settled in our room, there is plenty of closet space and a bed for Richard and I to sleep in next to Jake. There is a microwave, a box fridge, and a small table. The doctors came in to see Jakob within the hour and asked us if we had any questions. They give us many opportunities to clarify everything which has been of great comfort to us. Shortly after arrival the nurses came to take blood from Jake which of course was difficult due to his tiny little veins but we made it through. The rest of Monday was spent just getting settled. Richard stayed with Jake while Rena and I ventured out with Lucy to the bank to get some local currency so we could eat, Lucy also took us to the RT Mart which is a local market with a department store feel to it on the top level and then a grocery store beneath it. The grocery store really grossed me out, the smells are nothing like I have ever experienced and the meat department is slightly different to say the least. There are bins with chicken pieces for people to just rifle through with their hands…uh salmonella anyone??? Then there are several fish tanks with mostly live fresh fish, and also these cute little turtles which I was horrified to learn they would eat here. The store was of course filled with Chinese labels so I never really knew what I was looking at, and certainly wasn’t going to purchase.
The food here has proven to be an issue for us, I am picky so that is no surprise but Rich and Rena were both also taken back by many of the items and lack of things for us to eat. We are trying to adjust and the pizza is pretty good, but I asked my dad for a care package today so that I don’t starve. I am waiting in eager anticipation for my deluxe mac n cheese, I hope he sends many, many boxes.
Yesterday Jakob had his first Stem Cell Treatment which was administered by IV so he had no eating restrictions, he just needed an IV put into his hand. It all went smoothly and he tolerated it well with no adverse side effects so now we forge ahead. He will receive 5 more treatments, one more by IV and the rest by spinal provided everything goes ok. His next treatment is on Monday and it will be a spinal. Jake also met with a Physical Therapist here who assessed Jake’s needs and established that he was fine but that he would like to try some acupuncture to stimulate his nerves and increase blood circulation. They put two tiny little needles in his eyebrows and he looks like a little bug with antennas, we can’t help but giggle at how cute he looks.
Our Doctor here is Dr. Bing and he is wonderful. He has made every effort to answer any and all questions we may have. I spoke with him about why this treatment is met with such distain by the doctor’s in Canada and why this treatment has not been entered into any medical journals. He explained that this treatment was completely funded and founded by the U.S and that the only way it is approved in the US is for some cancer treatments. They shared this info though with the Chinese who did the same testing that we require in our country and once deemed safe they moved ahead with it. He also told me that they have made attempts to publish their findings but have been refused for whatever reason. My guess is politics, and money. You don’t continue to get money for research for disorders that have had cures found for them. He also mentioned how Bush will not approve stem cell research but that many of the stem cells actually come from the states. I have also explained to Dr. Bing that I can’t get a proper diagnosis or care for Jake in Canada. The neurologists have seen my son once in 9 months when he supposedly has a brain injury and no follow up has ever been scheduled. Everything I was told Jake would do later than other kids he does, some of them even earlier than most. On top of that I have had conflicting opinions on his MRI so Dr. Bing is giving Jake a MRI tomorrow so that we can get the answers we deserve to have. Isn’t it sad that I have had to travel to this far away land not only to get this treatment, but in order to be treated with compassion and get the answers every person in the world who suffers from anything deserves to get? I really think the rest of the world could learn a thing or two from these doctors who really do just care about each patient. Their hand is not on the door knob rushing to get to the next room they give you every moment you desire of their time.
That is where we are at today Day 5, we leave in 28 days. I miss my home, my daughter, my family, and my friends. I really miss beef and “normal” food. I will write again after Jake’s next treatment on Monday. Thank you all for your support and prayers, we feel it all with us every day.
And so it begins..........
Jakob's Journey is about to begin. In 2 short days we will board a plane to China and begin the journey that we worked so hard to take. 4 Months ago I never would have believed that we would have actually made it so quickly, that we would have met our goals. I wanted to take Jakob when he was 9 months old, they told us that the younger he was the better the treatment would work for him. Jakob turned 9 months yesterday, so the goal is met. I have not lost sight of the fact that this wouldn't be possible if it weren't for all of you who did so much to make sure this would happen for us. I will write often here to keep all of you posted on our arrival and on Jakob's progress. I ask that all of you who bought a bracelet wear it until Nov 6. Please wear it and keep Jake in your hopes and prayers because I believe in the power of that, I believe it has brought us this far, and Jake is a miracle everyday. He does things the doctor's said he wouldn't already without the treatments, I believe that is due to the love and support of all of you. So away we go, I will miss my friends, my family, and mostly my daughter Reagan but we will be back before you know it. Thank you all again. God Bless
Dawn
