Ryan Dickerson’s Blog

Hello All,

Thanks for your patience in giving us time to observe Ryan for the last few months.  Since we have been home, we have been hoping to see some new changes in Ryan.  Unfortunately, there is nothing new to report that can be attributed to the stem cells.  If there have been changes, they have been to small for anyone to notice.  There are days when he seems to be better than before, and days when he seems no better at all.  However, we still believe that the first trip and treatments resulted in definite improvements.  Ryan continues to hold his head and trunk up much better than before the treatments.  He also continues to be more attentive and maintains longer eye engagement.  In addition, he no longer has the sweating episodes he had previously.  We noticed all of these changes within about 3 months of returning home from the first series of treatments.  Ryan’s year over year spinal x-rays showed that his spine had straightened and his hips were more seated and formed than the previous year.  Our only explanation for the lack of improvements is that Ryan suffered from a significant cold and fever the last week of our time in China.  He had the fever for about a week and we were forced to put him on antibiotics when it moved in to his chest.  Although the doctors told us that it should have no effect on the stem cells, it seems to us that it must have.  We are still debating on returning for another series of treatments this summer.  Good luck to everyone and take care.  Dan, Suzanne, Ryan and Sarah,

Hello All,

We made it home!  Our planes were on time, with no maintenance problems.  Ryan behaved himself quite well and tolerated the long trip home.  Not only were we on time, but all of our luggage made it as well.  We are still adjusting to the time zone change of 13 hours.  After two nights of late night movies and reading, I finally gave up and took an Ambien to try and reset my clock.  Ryan is still burning the midnight oil, but is slowly coming around.  In addition, he is still battling the upper respiratory infection he caught at the hospital.  Sarah was very excited to see us and happy to have her family back home.  I have some time to re-adjust and catch up on six weeks worth of neglected projects before returning to work.  When we feel enough time has past to objectively report on Ryan’s progress, I will make our opinions known on this blog.  Until then, I wish everyone the best of luck and greatly appreciate all of your comments and support.  Take care.  Dan, Suzanne, Ryan and Sarah

Hello All,

   Ryan is now resting from his last spinal stem cell treatment.  After this last treatment, he was very agitated and moving around, so the doctor’s gave him some valium to calm him down.  We are starting the process of getting everything together for packing and going home.  Tomorrow, Dan is going to the local special needs children’s center to donate the adapted swing we brought.  The hospital would not relent on installing the swing on the floor, so we had to find another home for it.  On Sunday, we will have brunch with some of the staff and another gentleman we know before leaving.  This morning, Sarah gave Ryan and I an impromptu piano concert.  She has improved greatly in the last several weeks.  Ryan was listening intently and smiled when she was talking.  We are all ready to go home and see our girl.  As usual, it will be hard to say goodbye to the staff here.  We have spent over 3 months living and working with them this year and have developed friendships with many of them.  It is disappointing that the U.S. Govt. is so strict in giving Visas, as we would love to have some of our friends visit.  I will try to write one more time before leaving and post the pictures on flickr.  Thanks for reading and commenting.  Take care.  Dan

Hello All,

     We held out longer than anyone else, some have even gotten it twice, but Ryan finally caught the bug that has been terrorizing this entire floor.  For the last three weeks, every member of the staff and almost all the patients and their families have had fever with cough and chest congestion.  Although I knew it was only a matter of time before our repeated exposures would catch us, I was hoping to avoid it.  Ryan still had his stem cells by IV today and if well enough, will have his last spinal stem cell treatment on Friday.  As long as he just has a simple cold with little or no fever, we should be able to proceed as scheduled.  We have to avoid using antibiotics to protect the stem cells, so we will just have to gut this out old school.  As the date of our departure gets closer, time seems to be slowing down.  Not much else has happened the last few days.  Sarah continues to be in good spirits and is doing well in school.  Thanks for reading.  Take care.  Dan, Suzanne and Ryan.

Hello All,

   In case you did not know, yesterday was the mid-autumn festival here in China.  It is the counterpart to the spring festival on the Chinese New Year.  During the spring festival, you are served dumplings with meats and such inside that are quite tasty.  The mid-autumn festival celebrates with special “moon cakes.”  They are small hockey puck sized treats that have a thin outer coating of cake (so far so good), followed by the inside which tastes like weak but sugary Jello with the texture somewhere between hardening toothpaste or grainy potter’s clay (nasty).  Although I’ve heard differently, I think they are called moon cakes because you would only want to eat them if you were stuck on the moon without any other food.  In true American fashion, we chose to celebrate the festival at Hooter’s.  Ryan had a fantastic time dancing with the waitresses and we were able to get a few photos and video of him smiling and laughing.  Dan was Shangahied, no pun intended, into doing the “chicken dance,” with the girls.  With any luck, that film will be ruined before it can get out.  Our only sad note, Ryan’s favorite therapist Kerri went home for a week of vacation and will not be back until we are leaving on Monday morning.  Instead of waking up to work-out with a pretty girl, Ryan gets to do therapy with James.  Although he did his work this morning, you could tell he was wondering what was going on.  Some pictures are up on flickr and the video may some day be released.  Thanks for reading and writing to us.  Let us know if you hear from Diane that she is OK.  Take care.  Dan, Suzanne and Ryan

Hello All, Ryan is resting comfortably after his spinal injection.  There were no problems with the procedure and he seems to be OK.   We are very happy that he was able to have the procedure this morning.  Almost the entire floor, staff included, has been sick this last week.  Ryan has been wearing a doctor’s mask whenever he is out of the room.  It looks ridiculous, but if it keeps him healthy and on schedule, we’ll do it.  On a happier note, we found out that our math was incorrect on the number of stem cells he received today.  It was not 12 million, as we originally thought, but the lab was able to culture about 120 million stem cells from his bone marrow!  This is the real benefit of doing the bone marrow aspiration.  It remains to be seen if the cells produced are able to transform into brain cells, but that number is over 10 times what he usually gets in an umbilical stem cell treatment.  Suzanne is having her day out tomorrow.  She is traveling by train to Shanghai with another patient’s wife for a day of sight-seeing and shopping.  I should have some more pictures up on flickr before most of you read this.  Thanks for the thoughts and wishes.  Take care.  Dan, Suzanne and Ryan.

Hello All,     Tomorrow is set to be the biggest day of this trip and possibly the biggest of our lives.  At 10:30 am China time, Thurs. night 9:30 pm San Antonio time, Ryan will be receiving the re-infusion of his bone marrow stem cells via lumbar puncture.  These are the cells that have the greatest potential for increased uptake and function as they are a perfect genetic match.  He will also receive more of these cells, about 12-15 million vs. 6-10 for umbilical.  We are putting a lot of hope into this next treatment.  Although we saw some small improvements from the last trip, we are hoping to see even greater changes after this one.  As many of you know, I am not what people would call a religious person.  Despite that, I would ask that any of you who are willing and able to please keep Ryan in your thoughts and prayers at 9:30 this evening!  Whether we are here due to chance, fate, divine inspiration or some combination of them, we could use all of the positive energy our friends and family can muster.  Good luck to those in Texas facing Ike this weekend.  Be safe.  Take care.  Dan, Suzanne and Ryan.

Hello All, This post is for those people who may be reading Ryan’s blog in order to make a decision about this treatment option.  Suzanne and I have been discussing Ryan’s treatments and progress since we first arrived in Jan. of this year.  You will notice that we have not commented about any changes we may or may not have seen during this most recent trip.  I do not plan on writing anything regarding Ryan’s progress, or lack thereof, until after we are home for a few weeks at least.  The reason is:  I do not want to prejudice any of Ryan’s family, therapists, nurses or teachers until they have time to evaluate him for themselves.  Any changes seen, or not seen, should be the result of their own visual impression of his performance over time without our input.  This is the only way we can objectively evaluate this treatment and make good decisions for Ryan in the future.  I appreciate your understanding in this matter.  If anyone wishes to contact me directly regarding these treatments, Ryan’s progress or anything not covered in this blog; you may do so at “danieljdickerson@gmail.com.”  Thanks again.  Take care.  Dan

      Hello All, Ryan has just completed his 5th stem cell treatment and is resting pretty well.  He has only 30 min. left of his 6 hours on his back, so he is getting a little antsy.  This morning, the doctors reported that Ryan’s bone marrow culture is growing very well and they expect a large number of stem cells to be ready for re-infusion on Friday.  He had no complications from the aspiration except for the irritation of having to stay off his feet for 48 hours.  He and Suzanne participated in an impromptu ice cream social on Sat. and Ryan was practically jumping around the room, he was so happy to be on his feet again.  As to the adventure I had on Sunday:  It was an amazing trip!  The scenery looked exactly like the scenes from crouching tiger, hidden dragon.  We traveled about 3 hours by bus to the rafting center up in the mountains above “thousand islands lake.”  The staff treated me to a nice buffet lunch, and we in turn, treated the local mosquitos to a Chinese and American buffet lunch.  The river was great fun.  Although, trying to paddle down flowing rapids with a three foot piece of cut bamboo wearing a wicker helmet was not easy.  Zim came with us and played his guitar as we flowed downstream.  In the slower moving areas, I helped introduce many of the nurses and therapists to the pleasures of swimming.  True, they did scream at first when I pulled them in, but in my mind those were screams of joy.  When it was all said and done, everyone had a great time.  We ended up with wet clothes, two fish swimming in a boat, a water filled guitar, some great pictures and memories that will last a lifetime.  The only injury occurred when one of the nurses tried her first throw of a frisbee.  She did not take into account her proximity to the bus on her follow through and got a small reminder from the rear view mirror.  I took a lot of pictures with a cheap camera; I bought it for 9 bucks in case it got destroyed.  Unfortunately, my cheap camera did not properly rewind the film (who still uses film cameras!), so all of the pictures were ruined.  Never fear, two of the nurses brought digital cameras and I will upload the photos to flickr as soon as I get them.  Sarah got to go to 2 birthday parties this weekend and had a great time at both.  Mom and Dad are saying goodbye to Sarah and Ann Marie is taking over till we return.  We really appreciate the help all of the grandparents have given.  We couldn’t do this without their help and support.  Thanks as always for the comments and encouragement.  We can’t wait to come home.  Take care.  Dan, Suzanne and Ryan.

            Hello All, Today, we played hooky from the hospital and escaped with Ryan to visit some of the local sights.  We went to the Lingyin temple in the hills over looking Hangzhou.  The temple was very beautiful and we made wishes by lighting incense and bowing to the four corners.  The smoke is supposed to carry your wishes to your ancestors and/or Buddha (I think).  I will have to look that up later.  Either way, the grounds were pretty cool and the buildings were awesome.  Even though there were a lot of people, the place still had a tranquil feel to it.  After paying our respects to the Buddha, we decided to increase the size of our own bellies at the Hyatt West Lake buffet.  The food was exceptional and a welcome change to the fare we usually eat at the hospital.  They had feta cheese, kalamata olives, steak, and excellent deserts.  Needless to say, we left feeling as fat as some of the icons we just viewed.  To work off some of our girth, we took a nice walk along West Lake.  The lake is like a postcard with the fancy pagodas and boats that look like floating pagodas.  By this time, Ryan was starting to reach critical mass so we made our way back to the hospital just in time to order more rice for dinner.  Ugh!  Tomorrow morning is one of our most important days here.  Ryan will be having his Bone Marrow aspiration in addition to an IV stem cell treatment.  We expect that the stem cells from the bone marrow will take about 8 days to culture and should provide a much larger number of cells than the usual amount he gets from the donors.  Not only will there be more of them, but these cells are a perfect genetic match and will hopefully implant at a higher percentage.  Unfortunately, you can only do 1 BMT per visit because your body needs about 4 weeks to replace what was removed.  Thanks to everyone for reading and sending comments.  Suzanne and I look forward to reading them each day.  Keep Ryan in your thoughts tonight as you sleep.  Take care.  Dan, Suzanne and Ryan.  p.s.  I will try to upload all of the photos to flickr tomorrow!