We have finally gotten back into a routine with a new schedule. Derek attends Maine Center for Integrated Rehap in Rockland on Monday mornings. This is the same place that he had been going for rehab for the past year and a half. He goes for speech therapy and recreational therapy. When he returns home at noon, I take him to the Camden YMCA and help the therapist give him aquatic therapy in the pool. We have been working on strengthening and simulated walking in the pool.
On Tuesdays at noon he goes to Pen Bay Physical therapy for OT to work on strengthening his hands and getting more use out of them. From OT we go directly to the YMCA for another session of aquatic therapy.
Alternating Monday and Tuesday late afternoons each week, Derek works with
Jill Glover on cognitive work and writing. Thank you so much Jill for all your help.
We also fit in a visit with Dr. Buckley, the chiropractor who has been so generous to donate his time for Derek, on either Monday or Tuesday. Thank you Dr. Buckley.
Mondays and Tuesdays are very busy days fitting everything in so that Derek can attend Project Walk on Wednesdays, Thursdays, and Fridays. Derek started Project Walk three weeks ago. Shannon drives him down on Wednesday so that he can work out from 2:30 to 5:30. They then drive to Dustin's in Marlborough and spend the night. They have to get up early to commute back to Canton to work out from 8:30 to 11:30 in the morning. They again commute back to Dustin's for another night and back to Canton Friday morning to work out from 8:30 to 11:30. They head back home to Maine after that. I encourage everyone to go on Project Walk's website and check it out. The website is www.projectwalk.com Derek loves it and we all feel that it is the best thing that we have done for him other than going to China to try the stem cells. The sad part is that they don't take insurance, so Derek will probably only be able to go a couple of months. I am not going to go into detail about Project Walk because Jill is working with Derek on writing another article to post on the blog with his version of what he is doing in Project Walk.
We have noticed that since we got back from China and started Project Walk that Derek's memory has gotten a little better, but the most improvement that we have seen is his energy level and motivation. He now has the energy to stay up all day and is motivated to try to do things on his own. This is a big improvement.
Keep looking for Derek's article on Project Walk. Thanks for all your support.
Kathy
Thursday, March 27, 2008
Monday, March 17, 2008
Derek's story of China
The following is Derek's recollection of his trip to China. He has been working very hard with Jill to remember and write this himself. He hopes that you enjoy it. Derek has started Project Walk, so keep watching for his messages and updates about it.
My dad was doing some research on the internet looking for a place for me to live. Stem cells came up as an option so we figured that we had nothing to loose. My dad found a company in China doing stem cells and bone marrow transplants. We made contact with Beiki. We thought we had everything to gain. Nicole did follow up research to make sure it was legit. My mom made the travel arrangements. We had to get immunizations prior to leaving. My mom and I went to Augusta to get visas. For the next couple of months we packed all my medical supplies, clothes, and some food. We didn’t bring many clothes because the majority of the space was for medical supplies. Nicole brought propel packets to put in water. To help us fund the trip since insurance won’t cover it, we did some fundraisers.
On January 10th my mom, sister, and I embarked on a journey of a lifetime. So we set forth to China for a chance I may get something back from stem cell injections. We flew out of Portland to JFK where we met up with Nicole. We stayed there for several hours until our plane left for China. I was able to find a bench to lie down on and rest. It was time to board the plane for the 13 ½ hour flight. Everything was fine with the flight. Except for the seating, it was cramped. Being our first real international flight we didn’t know that you had to find a row all to yourself so that you get your own to lie down. So there we sat all three of us, in one row, the only people like that on the plane, cramped. We made it there! The food on the plane was horrible; it was rice and beef or fish. Why would you serve something that smells that bad?
We finally made it to China, and they have no concept of handicapped people. They had no isle chairs so they had to physically pick me up and carry me on and off planes. We finally made it to Shenyang Airport completely exhausted, and we met up with Tony, our Chinese interpreter who works for Beike. He took us to the hospital from the airport. Beike is the company that we went through. The trip to the hospital took about an hour. It was dark so we couldn’t see anything.
We got to hospital late, and we had no desire to explore, just sleep. The room was very sparse, not luxurious, definitely no Best Western, but we weren’t there for that. The room came with 3 beds, TV, DVD player, water cooler, hot plate, microwave, card table, two chairs and a bathroom.
The first day consisted of many evaluations: EKGs, MRIs, x-rays, and meeting with doctors. We met with Lucy who’s another Bieki employee who would help us the next month.
The next day we got a good look at the hospital which is huge and only three years old. That day I got my schedule for the month. It consisted of acupuncture and two sessions of PT a day. I had that everyday until my surgery.
I had my first stem cell injection in my lumbar on January 15. After the injection I had to lie still for 4-6 hours on my side so I didn’t get a spinal headache. (A spinal headache is a migraine type of headache marked by severe head pain lasting several hours or more.) I then had my bone marrow taken out and they let that grow for seven days before they injected it in me during my surgery.
The reason I needed surgery was because my spinal cord had adhered to the side wall of my spinal column, not letting my spinal fluid flow freely. I also had a cyst that was putting pressure on my spinal cord that needed to be drained. It wasn’t that hard of a decision because I knew if I didn’t have the surgery the stem cell injections would be for nothing.
Before my surgery Nicole went to Beijing to see her long time friend Whitney who now lives there and teaches English with her boyfriend. They got to catch up. She took Nicole to lots of different places like the Great Wall. The Great Wall is so high up there is little oxygen. You can’t even use a lighter. I gave her my camera to take pictures for me. She ended up having Whitney’s boyfriend take the pictures because the wall was really steep, and Nicole is afraid of heights!! Whitney was able to get us some good American food. Whitney came a few days later to visit us. It was nice having somebody around who spoke Chinese. Nicole came back the day of my surgery.
We were there for ten days before the surgery. So I had the surgery, and it went fine. They put me under so I didn’t remember it. After the surgery I had to stay in the ICU for two days with no food or TV and only visitors twice a day for a short period of time. Thank God I was only there for two days. After those two days I went back upstairs, and it felt real good to be back there.
When I went back to the room, I had to stay there for ten days with no therapy or acupuncture. That was extremely boring. We watched a butt load of DVDs. Ben and Paul, two Australians who were there having stem cells organized an outing to go to the Antique market to buy cool old Chinese artifacts. Mom and Nicole went with them. They went to Strange Slope which is a hill that pulls you up backwards. I wish I had got to go but I was still laid up. They also had a traditional Chinese lunch.
The last week was the beginning of the Chinese New Year. They set off huge fireworks for ten days straight all day and night. It was pretty for the first few days then it got annoying. It sounded like a war zone. During the New Years everything shuts down. The reason why we got therapy during the holiday is because we made fuss. The only people who got therapy were Beike clients.
Everybody goes home during the New Years to hang out with their families.
Lucy the Beike employee went home and celebrated the New Years and made dumplings and set off fireworks. When she came back she brought us dumplings, and they were real good. We asked what was in them but she wouldn’t tell us what meat was in them. They tasted like sausage but maybe it was dog.
It took us some time to pack because we had a lot of stuff, but we left a good amount for others. That’s what you do is leave stuff for others.
We met some pretty neat people there, two guys from Australia who were there by themselves. They were two strong individuals who came there by themselves. There was a Canadian couple and a family from Arkansas as well. When we left we gave them stuff that we didn’t want to bring home.
The day finally came and it was time to go home. The trip home took 31+ hours. It seemed like forever. We had some major layovers, but we made it back. Nicole went her way at JFK. It was nice coming back, and I got my own row to lie down.
When we got to Portland, my dad met us and took us home.
So far I haven’t seen too much from the stem cells, but they say to do really intense therapy and give it six months to see what you get back, so now that’s what I am doing.
Thank you Nicole and Mom and many others who helped.
My dad was doing some research on the internet looking for a place for me to live. Stem cells came up as an option so we figured that we had nothing to loose. My dad found a company in China doing stem cells and bone marrow transplants. We made contact with Beiki. We thought we had everything to gain. Nicole did follow up research to make sure it was legit. My mom made the travel arrangements. We had to get immunizations prior to leaving. My mom and I went to Augusta to get visas. For the next couple of months we packed all my medical supplies, clothes, and some food. We didn’t bring many clothes because the majority of the space was for medical supplies. Nicole brought propel packets to put in water. To help us fund the trip since insurance won’t cover it, we did some fundraisers.
On January 10th my mom, sister, and I embarked on a journey of a lifetime. So we set forth to China for a chance I may get something back from stem cell injections. We flew out of Portland to JFK where we met up with Nicole. We stayed there for several hours until our plane left for China. I was able to find a bench to lie down on and rest. It was time to board the plane for the 13 ½ hour flight. Everything was fine with the flight. Except for the seating, it was cramped. Being our first real international flight we didn’t know that you had to find a row all to yourself so that you get your own to lie down. So there we sat all three of us, in one row, the only people like that on the plane, cramped. We made it there! The food on the plane was horrible; it was rice and beef or fish. Why would you serve something that smells that bad?
We finally made it to China, and they have no concept of handicapped people. They had no isle chairs so they had to physically pick me up and carry me on and off planes. We finally made it to Shenyang Airport completely exhausted, and we met up with Tony, our Chinese interpreter who works for Beike. He took us to the hospital from the airport. Beike is the company that we went through. The trip to the hospital took about an hour. It was dark so we couldn’t see anything.
We got to hospital late, and we had no desire to explore, just sleep. The room was very sparse, not luxurious, definitely no Best Western, but we weren’t there for that. The room came with 3 beds, TV, DVD player, water cooler, hot plate, microwave, card table, two chairs and a bathroom.
The first day consisted of many evaluations: EKGs, MRIs, x-rays, and meeting with doctors. We met with Lucy who’s another Bieki employee who would help us the next month.
The next day we got a good look at the hospital which is huge and only three years old. That day I got my schedule for the month. It consisted of acupuncture and two sessions of PT a day. I had that everyday until my surgery.
I had my first stem cell injection in my lumbar on January 15. After the injection I had to lie still for 4-6 hours on my side so I didn’t get a spinal headache. (A spinal headache is a migraine type of headache marked by severe head pain lasting several hours or more.) I then had my bone marrow taken out and they let that grow for seven days before they injected it in me during my surgery.
The reason I needed surgery was because my spinal cord had adhered to the side wall of my spinal column, not letting my spinal fluid flow freely. I also had a cyst that was putting pressure on my spinal cord that needed to be drained. It wasn’t that hard of a decision because I knew if I didn’t have the surgery the stem cell injections would be for nothing.
Before my surgery Nicole went to Beijing to see her long time friend Whitney who now lives there and teaches English with her boyfriend. They got to catch up. She took Nicole to lots of different places like the Great Wall. The Great Wall is so high up there is little oxygen. You can’t even use a lighter. I gave her my camera to take pictures for me. She ended up having Whitney’s boyfriend take the pictures because the wall was really steep, and Nicole is afraid of heights!! Whitney was able to get us some good American food. Whitney came a few days later to visit us. It was nice having somebody around who spoke Chinese. Nicole came back the day of my surgery.
We were there for ten days before the surgery. So I had the surgery, and it went fine. They put me under so I didn’t remember it. After the surgery I had to stay in the ICU for two days with no food or TV and only visitors twice a day for a short period of time. Thank God I was only there for two days. After those two days I went back upstairs, and it felt real good to be back there.
When I went back to the room, I had to stay there for ten days with no therapy or acupuncture. That was extremely boring. We watched a butt load of DVDs. Ben and Paul, two Australians who were there having stem cells organized an outing to go to the Antique market to buy cool old Chinese artifacts. Mom and Nicole went with them. They went to Strange Slope which is a hill that pulls you up backwards. I wish I had got to go but I was still laid up. They also had a traditional Chinese lunch.
The last week was the beginning of the Chinese New Year. They set off huge fireworks for ten days straight all day and night. It was pretty for the first few days then it got annoying. It sounded like a war zone. During the New Years everything shuts down. The reason why we got therapy during the holiday is because we made fuss. The only people who got therapy were Beike clients.
Everybody goes home during the New Years to hang out with their families.
Lucy the Beike employee went home and celebrated the New Years and made dumplings and set off fireworks. When she came back she brought us dumplings, and they were real good. We asked what was in them but she wouldn’t tell us what meat was in them. They tasted like sausage but maybe it was dog.
It took us some time to pack because we had a lot of stuff, but we left a good amount for others. That’s what you do is leave stuff for others.
We met some pretty neat people there, two guys from Australia who were there by themselves. They were two strong individuals who came there by themselves. There was a Canadian couple and a family from Arkansas as well. When we left we gave them stuff that we didn’t want to bring home.
The day finally came and it was time to go home. The trip home took 31+ hours. It seemed like forever. We had some major layovers, but we made it back. Nicole went her way at JFK. It was nice coming back, and I got my own row to lie down.
When we got to Portland, my dad met us and took us home.
So far I haven’t seen too much from the stem cells, but they say to do really intense therapy and give it six months to see what you get back, so now that’s what I am doing.
Thank you Nicole and Mom and many others who helped.
Tuesday, March 11, 2008
Message to Elizabeth
Hi Elizabeth,
We would be happy to exchange information with you about China. You can email us at
obandsons@roadrunner.com and we can exchange phone numbers. Thank you for the well wishes.
Kathy
We would be happy to exchange information with you about China. You can email us at
obandsons@roadrunner.com and we can exchange phone numbers. Thank you for the well wishes.
Kathy
Monday, February 25, 2008
Update 2/25/08
Hello everyone,
It is so great to be back home. We are getting back into the old routine again. Derek has been having a lot of evaluations again to get services started again. Thank you to Jill Glover for coming over Friday to start working with Derek cognitively again. She is having Derek try to remember as much as he can about the month in China and then he will write a report about it. Hopefully when he gets it done, we will be able to post it on the blog so that you can all read about what he remembers.
We did find out what the white mass on the MRI was. When they implanted Derek's bone marrow stem cells at the time of the surgery, they put them in a glue like substance to adhere them to the spinal cord. The purpose of this is to give them a better chance to be absorbed directly into the spinal cord instead of just be flushed through his system.
Derek has not seen any changes yet, but they say to allow six months to see any changes. Time will tell.
Thank you for all your continued thoughts and prayers.
Kathy and Derek
It is so great to be back home. We are getting back into the old routine again. Derek has been having a lot of evaluations again to get services started again. Thank you to Jill Glover for coming over Friday to start working with Derek cognitively again. She is having Derek try to remember as much as he can about the month in China and then he will write a report about it. Hopefully when he gets it done, we will be able to post it on the blog so that you can all read about what he remembers.
We did find out what the white mass on the MRI was. When they implanted Derek's bone marrow stem cells at the time of the surgery, they put them in a glue like substance to adhere them to the spinal cord. The purpose of this is to give them a better chance to be absorbed directly into the spinal cord instead of just be flushed through his system.
Derek has not seen any changes yet, but they say to allow six months to see any changes. Time will tell.
Thank you for all your continued thoughts and prayers.
Kathy and Derek
Tuesday, February 12, 2008
Update 2/12/08
Hi,
We made it home safe and sound. It was an extremely long trip. I am running on a couple of hours sleep, but Derek got 12 hours of sleep after we got home. On the 13 1/2 hour flight, Derek got a row with three seats so he got to lay down and sleep a lot of the flight. I am trying to stay up all day so hopefully I will be able to sleep tonight. It will probably take us a couple days to change our internal clocks back the 13 hour difference. I've got the months worth of mail sorted, the suitcases unloaded and the laundry started. Getting caught up will take a few days, I'm sure.
We are looking forward to a dinner of meat, potatoes and vegetable tonight and being able to sit at a table and chairs to eat. We got a very warm greeting from the two dogs last night when we got home. Lots of kisses. Thanks again for everyone's support.
Love, Kathy and Derek
We made it home safe and sound. It was an extremely long trip. I am running on a couple of hours sleep, but Derek got 12 hours of sleep after we got home. On the 13 1/2 hour flight, Derek got a row with three seats so he got to lay down and sleep a lot of the flight. I am trying to stay up all day so hopefully I will be able to sleep tonight. It will probably take us a couple days to change our internal clocks back the 13 hour difference. I've got the months worth of mail sorted, the suitcases unloaded and the laundry started. Getting caught up will take a few days, I'm sure.
We are looking forward to a dinner of meat, potatoes and vegetable tonight and being able to sit at a table and chairs to eat. We got a very warm greeting from the two dogs last night when we got home. Lots of kisses. Thanks again for everyone's support.
Love, Kathy and Derek
Sunday, February 10, 2008
Update 2/10/08
Hello,
We are pretty well packed and waiting for 8:00 when they turn the hot water on so we can all shower and go to bed as we are leaving to early to get hot water in the morning. Tony is taking us to the airport at 7 am. We have 31 hours of traveling before we will be home. This has been an amazing journey. We would like to thank everyone who helped make this possible for Derek and all of you who have followed us by way of the blog. We will continue to pray that Derek will see some positive results in the months ahead. Whatever the outcome, at least we can say that we tried. We’ll write again after we get home.Love to all, Derek, Kathy and Nicole
We are pretty well packed and waiting for 8:00 when they turn the hot water on so we can all shower and go to bed as we are leaving to early to get hot water in the morning. Tony is taking us to the airport at 7 am. We have 31 hours of traveling before we will be home. This has been an amazing journey. We would like to thank everyone who helped make this possible for Derek and all of you who have followed us by way of the blog. We will continue to pray that Derek will see some positive results in the months ahead. Whatever the outcome, at least we can say that we tried. We’ll write again after we get home.Love to all, Derek, Kathy and Nicole
Saturday, February 9, 2008
Update 2/9/08
Hello,
Our time here in Shenyang is drawing to a close. We are now counting hours not days. Tomorrow we will pack up and be ready to leave for the airport early Monday morning.
Derek had some therapy today and more IVs. He had his last spinal cord stem cell injection this afternoon at 4:00. He has to lie still for four to six hours now to avoid a spinal headache.
We got the copies of the MRI images that were taken yesterday. Tony read us the Doctor’s report that said that there were no changes from the MRI that was taken after we arrived. This immediately sent my head into a tail spin. I needed more information to rationalize why we had had the surgery in the first place. I questioned Tony and Lucy about having Derek’s surgeon look at them and was told that he was on vacation for the holiday and would not be back until Feb. 12th after we had left. I dug deeper to find out if there was a Doctor on call who could compare the two MRIs. Lucy found a Doctor downstairs who said that he would look at them, so Lucy, Nicole and I headed down with images in hand. We were told that the cyst and adhesion were gone, but there was a white mass pushing on his spinal cord. We were told that this was the bone marrow stem cells that were injected at the time of the surgery. The Doctor said that they are not nerve cells when they are injected and that with time they would either turn to nerve cells or die. He said to have a follow up MRI done in three months. He showed us where there was little spinal fluid around his cord and said that there was swelling of the cord. We knew about the swelling factor after surgery from what we had learned after Derek’s initial surgery after the accident. I have already been on the internet emailing another Doctor to get more information about the stem cell mass, why the stem cells aren’t absorbed into the blood stream, and where in the United States do we go for a follow up MRI where the Doctors will be familiar with stem cell procedures and be able to evaluate the three MRIs.
On a more positive note: Another American patient who has a spinal cord injury from a gun shot wound was transferred here from another hospital in China where he had had stem cell treatments for a month and then came here for surgery, is already seeing his leg move. The one thing to remember is that everyone’s spinal cord injury is at a different level, different severity, and they are at different time frames out from their injuries. Any improvements are a big boost to all the patients and families.
We said good bye to Lucy today. She has the next three days off to celebrate the holiday with her family. She was a big help to us and was a delight to be around. She will be missed around here the next couple of days.
We’ll write again tomorrow before we start our journey back to the states.
Love to all, Derek, Nicole and Kathy
Our time here in Shenyang is drawing to a close. We are now counting hours not days. Tomorrow we will pack up and be ready to leave for the airport early Monday morning.
Derek had some therapy today and more IVs. He had his last spinal cord stem cell injection this afternoon at 4:00. He has to lie still for four to six hours now to avoid a spinal headache.
We got the copies of the MRI images that were taken yesterday. Tony read us the Doctor’s report that said that there were no changes from the MRI that was taken after we arrived. This immediately sent my head into a tail spin. I needed more information to rationalize why we had had the surgery in the first place. I questioned Tony and Lucy about having Derek’s surgeon look at them and was told that he was on vacation for the holiday and would not be back until Feb. 12th after we had left. I dug deeper to find out if there was a Doctor on call who could compare the two MRIs. Lucy found a Doctor downstairs who said that he would look at them, so Lucy, Nicole and I headed down with images in hand. We were told that the cyst and adhesion were gone, but there was a white mass pushing on his spinal cord. We were told that this was the bone marrow stem cells that were injected at the time of the surgery. The Doctor said that they are not nerve cells when they are injected and that with time they would either turn to nerve cells or die. He said to have a follow up MRI done in three months. He showed us where there was little spinal fluid around his cord and said that there was swelling of the cord. We knew about the swelling factor after surgery from what we had learned after Derek’s initial surgery after the accident. I have already been on the internet emailing another Doctor to get more information about the stem cell mass, why the stem cells aren’t absorbed into the blood stream, and where in the United States do we go for a follow up MRI where the Doctors will be familiar with stem cell procedures and be able to evaluate the three MRIs.
On a more positive note: Another American patient who has a spinal cord injury from a gun shot wound was transferred here from another hospital in China where he had had stem cell treatments for a month and then came here for surgery, is already seeing his leg move. The one thing to remember is that everyone’s spinal cord injury is at a different level, different severity, and they are at different time frames out from their injuries. Any improvements are a big boost to all the patients and families.
We said good bye to Lucy today. She has the next three days off to celebrate the holiday with her family. She was a big help to us and was a delight to be around. She will be missed around here the next couple of days.
We’ll write again tomorrow before we start our journey back to the states.
Love to all, Derek, Nicole and Kathy
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