Ryan Dickerson's Blog

            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!

  Hello All,  Ryan completed his second spinal stem cell treatment without incident.  He was calm and did not suffer any of the problems we had on the first one.  He had a slight fever about 24 hours afterwards, but we were able to resolve that quickly.  On Saturday, we were actually able to go outside for slightly over an hour for a much needed walk away from the hospital.  Suzanne, Ryan and I just picked a direction and started going.  It was nice to get away from the hospital environment and spend some time outside without getting rained on or sweating profusely.  Although it rained out our plans for a trip to the local park today, Sunday, this week looks to be shaping up rather well.  Ryan has a spinal treatment scheduled for Monday and his bone marrow aspiration with an IV treatment on Friday.  We have planned an “escape the hospital,” day for Thursday; where we will finally see West Lake and visit the other touristy sights in Hangzhou.  In addition, I am looking forward to the white water rafting trip planned for next Sunday.  We are taking a bus-load of the nurses, doctors and therapists for a two hour rafting trip at a place called “Thousand Islands Lake.”  It is supposed to be one of the cleanest lakes in the area and is fed by the same spring from which the Nongfu Springs bottles its water.  Since we have been using and drinking this water almost exclusively while in China, I am a little nervous about seeing how “clean” this lake really is.  If it is anything like the local waters, which look like you could set them on fire if you threw in a match, we will definitely have to rethink our dental regimen.  We also met a nice guy, by the name of Zim, who looks like a smaller, more hippie version of Grizzly Adams.  He has been entertaining all of the kids and us adults with his guitar playing and singing the last few days.  With his help, we are starting to get people out of their rooms and into the social area in the afternoons.  Today, a new patient’s family made spaghetti and Suzanne set out some cheese and fruit for about 10 of us.  Sarah is enjoying her time with her cousins, Devon and Parker, this weekend and courtesy of Hurricane Gustav, she may have them for a few extra days.  That’s about it for now.  I will update with some more pictures soon.  Thanks for reading, and giving us your support and comments.  Take care.  Dan

 Hello All,    Ryan is just laying down to sleep on Tuesday night.  He is adjusting to the new schedule and time change better each day.  The last 9 days have been such a blur that I can’t believe we have been here that long already.  Ryan is scheduled to have his second spinal stem cell treatment tomorrow.  I had a nice time today also, swimming and going to lunch in downtown Hangzhou.  The patients here seem quieter than the last group we were here with in Jan.  We are missing our Aussie friends who kept us company and helped raise the noise level a bit around here.  We just learned today, that Ryan will be the youngest child (I assume they meant foreign child) to receive the Bone Marrow Stem Cell treatment.  It is very exciting and a little scary to know he will be blazing this trail, but it offers the best hope for increased uptake and progress.  Both the chief doctor and Ryan’s assigned doctor were hematologists prior to joining the company and have extensive experience in doing bone marrow aspirations.  So we feel as safe as possible given the circumstances.  Since we have been here, only two of the last five patients who wanted bone marrow treatments were medically cleared to get them.  The one women I spoke to said that the aspiration was painless and she had almost no pain or bruising afterwards.  Sarah has started school and seems to be enjoying her time with her grandparents.  We received an email from her teacher telling us that she is doing well in school and has lots of friends.  The ability to talk to her and see her each day over the computer makes it easier for everyone.  Well, His Majesty is stirring a bit in his bed so I need to go.  Thanks for reading.  Take care.  Dan  p.s.  I promise to take and get some pictures up soon.  I actually got photographic evidence of Suzanne washing the dishes.  The only rarer photos would be her cooking or capturing a picture of Sasquatch!  

  Hello All,It has been a few days since Ryan’s first stem cell treatment of this trip.  I would have updated sooner, but he had some trouble with the last injection.  We had an episode of vomiting the night of the treatment and I think he has had significant neck and back pain for the last two days.  Thankfully, he slept well last night (Sun.) and seems to be in better spirits today.   Suzanne and I are planning our first small get together for this evening.  It will be just snacks and such for whomever wishes to join us.  The only low point for us has been losing a fight with the hospital management over the “gift” of a swing.  We brought an adapted swing for the kids in the hospital to mount on the 20th floor for their use.  Although we checked with the company before buying and bringing the swing half-way around the world, the hospital manager refused to allow the swing to be put up.  He is worried about a child getting hurt.  We tried to show him the web-site showing the capacity of the swing, but he was not interested.  The company’s rep. here at the hospital is trying to find a local orphanage that we can donate the swing to.  I know that Ryan and the other kids would really benefit from the soothing movements of the swing, but it is impossible to get a bureaucrat to see beyond the risk management.  Enough complaining…   We had a nice day yesterday, Johnny took us to a park just down from the hospital that had nice trees for Ryan to look at.  Tomorrow I (Dan) am going with some other patients and staff to go swimming in Hangzhou and for dinner.  Suzanne gets to go out next time.  It will be nice to see some of the city without the freezing rain and snow.  I hope everyone is doing well.  Thanks for the comments and well-wishes.  Take Care.  Dan, Suzanne and Ryan.

Hello All,We finally made it to China and are ensconced in our fancy VIP suite at the hospital.  I guess we had some good karma built up after the travel disasters of the last trip.  All of our planes we on time, we were met by the assistance personnel in Chicago, all of our bags made it, our driver was waiting for us at Shanghai, there was no traffic on the road between Shanghai and Xiaoshan, our suite was ready at the hotel and we have the largest and nicest room on the entire 20th floor of the hospital.  That being the case, I am currently waiting for the typhoon or earthquake to hit.  We did have one small snafu at the airport regarding the dry ice and our vast number of bags, but we paid the fees and will fight it out with American later.Apparently, the Chinese people here do not see to many bald Americans.  When we arrived at the hotel and the van door opened, both porters pointed at me, laughing and saying “Oh, my god.  You’re back!”  I’m sure it was meant in the most flattering and gracious way.  We had a very nice reunion with all of the nurses and doctors.  Ryan’s favorite nurse, Sophie, came to see him on her day off and stayed to visit for a while.  Everyone said how much taller Ryan had grown in the last six months.  We are scheduled to have the first stem cell treatment tomorrow, Friday.  We are still waiting for all of Ryan’s test results to come back before the doctors decide if it is safe for Ryan to have the Bone Marrow Stem Cell treatment.  They had us do a CT of Ryan today.  I think they want some data on which to base future results, since his last CT was over 10 years ago. Pictures will be added to this post later.I hope everyone is doing well back home.  We miss you and can’t wait to get back.  Take care, Dan, Suzanne and Ryan.