Ryan Dickerson's Blog

Hello All, Ryan is sleeping after his final stem cell injection, by lumbar puncture.  These are supposed to by the most beneficial for his brain.  We continue to talk to all of the other patients and families about their progress, or lack thereof.  Our neighbor, Matt, says he is feeling more changes in temperature through his left hand.  Other patients report some improvements in vision.  The other families continue to tell us that Ryan is making longer and better eye contact.  We have seen no significant differences in motor skills, oral motor function, bowel/bladder control, cognition or spasticity, though.  We are not discouraged by this, yet.  My understanding, admittedly limited, is that it will take some time before the stem cells migrate, implant, and develop into functional brain cells.  I am going to wait until May before I render my opinion on the benefits of this treatment for Ryan.  It is getting much tougher to stay here each day as more of the families, who have been here with us the whole time, leave for their homes.  Suzanne and I have shared meals, killed a lot of time and walked back and forth from the hotel with Shane and Deb, Matt’s brother and step-mom from Australia, these last 3 weeks.  We also saw our neighbors to the other side of us, from Houston and Missouri, go home today.  It is exciting to be so close to coming home, but hard to watch everyone leave.  It feels a lot like the last weeks of boot camp.  You know how close you are to finishing, but it still seems like forever.  Along with our Aussie friends, we have started a little tradition here at the hospital.  Each day around 4:30 several patients and families start to gather by the couch next to the nurse’s station or in the common room.  People bring little snacks, drinks (hard or soft) and just pass the time.  I don’t know how much the nurses like it, but it keeps us sane.  The picture above is Ryan and Deb at one of our daily couch meetings.  Take care. Dan

Hello All,Ryan is finally asleep and I can get some things done.  He had a bit of a rough weekend getting over this last stem cell treatment.  He seemed to have more back pain these last two days than previous treatments.   There was one bright spot this weekend, however.  Ryan took many steps this evening for his friend, George.  He walked an estimated 20 meters (that’s about 60 feet) over a 20 minute period.  At one point, he walked so quickly that George was unable to back up his wheelchair fast enough and Ryan walked past him.  George, who is Scottish but lives in Tasmania and sounds just like Sean Connery, mock-yelled at Ryan for passing him.  Ryan stopped briefly, smiled and laughed a little, then continued to walk on.  George has been encouraging Ryan to walk every evening and getting more success than anyone else.  George is any extremely likable, politically incorrect, grumpy old man who has become everyone’s favorite patient; besides Ryan of course.  We will be sad when he leaves tomorrow.   In addition to Ryan’s walking tonight, I have been told by several of the other patient’s families that Ryan seems significantly more aware than when they first met him.  They have also said he is making more and longer eye contact.  It doesn’t surprise me that he looks better to everyone now.  When we arrived and for about one week after, Ryan was a complete wreck from the long journey.  Suzanne and I haven’t seen anything significantly different or new in him yet.  I admit, however, that we may be to close to be completely objective.  I hope the others are correct and we are at the start of some progress.  We have a very busy week ahead of us.  Ryan has an IV stem cell on Monday, spinal stem cell on Wednesday and his last IV stem cell treatment on Friday.  We added two extra treatments, one spinal and one IV, since we could fit them in without extending our stay.  The weather has been miserable.  We are all fighting severe cabin fever and lack of sun exposure.  It is very depressing.  We haven’t been able to see any of the local sights or do any shopping because of the poor driving conditions.  This area is extremely beautiful and one of the top Chinese destinations when the weather is nice.  Maybe next time we will see some of it.  We continue to appreciate the constant responses to this blog.  It is really nice to read everyone’s comments each day.  Thanks for your continued support.  Keep Ryan fast in your thoughts this week and hope these last three treatments really make a difference in his life. Take care.   Dan  (Sorry I forgot about your birthday Diane!  Happy late Birthday!)

Hello All,Ryan has just completed Stem Cell Injection #5 (fourth by spinal puncture).  He was in some discomfort after the procedure, but is resting comfortably now.  There is nothing like a little pain killer to help you sleep.  Not much has changed here in the last week.  Some new friends from Australia left for home.  Suzanne and I were very sad to see them leave.  Three other patients and/or families leave next week.  We have become fast friends with them all and it will be very hard to be here after they go home.  Suzanne is already trying to figure out when we can visit Australia and if we can coordinate the next trip to China with them.  Everyone has told us not to expect any changes until 3-5 months after we are home.  It is difficult not to look for them however.  Thus far, we have not seen any specific changes in Ryan with these treatments.  Some of the other patients, those with Optic Nerve Hypoplagia(sp), have reported improvements.  The patients with Spinal Cord Injuries are also feeling differences in their bodies.  However, almost no one can point to definitive examples yet.  We are still optimistic for Ryan and are planning to return in Sept. for a second round of treatments.  After those, we will make our final determination as to the benefits of this treatment for Ryan.  We look forward to coming home soon.  The weather here has been very cold, snowy/rainy and constantly overcast.  If I didn’t know better, I would guess someone sent me to Cleveland.  We really miss Texas.   Take care,Dan 

Hello All,I thought this was funny and decided to share.  This morning, Ryan was yelling very loudly during the latter portions of therapy and while standing in his stander.  Neither Suzanne nor I could get him to settle down.  As many of you know, Ryan has a long history of paying special attention to pretty girls, especially blonds.  As an experiment, I turned off the game Ryan was ignoring and turned on a Shakira video on his computer.  He immediately stopped yelling and proceeded to watch the entire video  ”hips don’t lie.”  No one in the therapy room could believe the rapt attention Ryan was giving the video screen.  He watched the whole video, keeping his head up for the whole time and was calm for the remaining 30 minutes of standing.  Needless to say, before the video was over Ryan had a few extra men around him also in rapt attention.  Unfortunately, we are unable to download more videos here in China.  He will have to wait until we get home for more.   He is down in the operating room as I write this, so hopefully he is having good dreams.   Take care.    Dan 

Hello All,Thanks for all the comments and replies, we really enjoy reading them.  The last several days have been pretty much the same, so there was not much to report.  Ryan did well after his last injection and enjoyed a much needed rest at the hotel this weekend.  Both Suzanne and I were able to get out of the hospital and see a little bit of Hangzhou.  Suzanne went shopping on Friday.  Dan went out on Sat. with some local business contacts of a family friend.  Hangzhou has some very beautiful sights and tourist areas that would be fantastic if it were not 34 degrees with rain and fog.  I also had an excellent traditional Chinese lunch with Henry and William, ( our new contacts here in Hangzhou).   For those interested, the Hooters wing party was a great success.  Everyone enjoyed the wings and had a nice time gathering together to talk of things other than hospital stuff.  Unfortunately, Dan had to wait about 45 minutes at Hooters until the wings were finished.  That is a story best left for another blog, however.  This is a very big week for Ryan.  He has a Spinal Stem Cell Injection today (Monday) and another on Friday.  We have reached the halfway point in our trip and are looking forward to coming home in a few weeks.  Please keep Ryan in your thoughts today and Friday.  As always, thanks for keeping in touch and take care.   Dan

Hello All,Ryan is now resting quietly after his second spinal stem cell injection (3rd sct overall).  The only trouble we have had with this treatment so far was the placement of the IV.  The nurse had some trouble, initially, finding a good vein on Ryan.  After I stopped her from fishing around in his foot, another nurse was able to locate and tap a vein successfully.  The doctor was surprised when giving Ryan his anaesthesia that it took so much for him to fall asleep.  He told Ryan to “sleep” twice as he was pushing a little more through the IV.  He has to lay on his back without a pillow for 6 hours.  Even though we are turning him from side to side frequently, he is starting to get irritated with being in bed so much.  We have two more hours until he can get up.  He has already punched me in the face twice when I’ve gotten close to him, trying to keep him calm and head down.  I’m not sure, but I think he is faking the drowsiness to lure me into a false sense of security.  That’s all for now, his majesty is calling loudly; so I will risk another beating and try to turn him over.  Take care.      Dan

Hello All,It is Monday night and Ryan is just now laying down for bed, after another long day.  He continues to do well in his therapy and tolerating the acupuncture.  He definitely does not like the needles going in, but once placed he seems to be fine.  Although it is still way too early to make any definitive claims, Suzanne and I have noticed a small change in Ryan’s behavior since the spinal stem cell injection.  For the last few months, and at other times in his life, Ryan has been either extremely irritable between 11 a.m. and 1 p.m. or falls asleep and shortly wakes up screaming.  Many of you are familiar with this problem of his.  Since his spinal treatment three days ago, Ryan has fallen asleep around 11 a.m. and slept soundly for about 1 to 1 1/2 hours each day.  He has broken out of this cycle before, and it has only lasted three days, so it is possibly just a coincidence.  But we will keep monitoring any changes and let everyone know.  On a lighter note, we have decided to have another get-together with the other families and staff here at the hospital tomorrow.  In just another example of a life time of service to my fellow man, I have found and volunteered to pick up the food from an American restaurant here in Hangzhou.  I believe the name of this establishment is “Hooters.”  Of course, I have no first hand knowledge of such a place, but I am willing to sacrifice myself in order to bring some good, wholesome American food to the people here in the hospital.  Thanks to everyone for keeping in touch with us here.  We miss you and hope you are all doing well this winter.  Wednesday is another spinal stem cell treatment, so please keep Ryan in mind.  He will have his treatment around 12:30 a.m. (Texas time) on Wed. morning.  I hope someone has big dreams for him that night.  Take care.   Dan

Hello All,Ryan received his first spinal injection of stem cells yesterday.  Even though we have both seen him go under anesthesia before, watching his eyes roll back into his head and be taken away on the gurney is extremely difficult.  We went through all the emotions from fear to rage for having to be here.  However, Ryan was awake when he returned to the room.  He had a difficult time with the pain after the treatment.  We had to pressure the staff into giving him some pain medication.  The general rule of medicine over here is that the less medication in the body, the better.  Our position is that you will heal faster if you and your body are not stressed out by dealing with the pain.  Eventually, Ryan’s distress and our annoying presence convinced the staff to give him a shot.  After that, he seemed to relax and was able to sleep last night.  It is morning here in China now, and Ryan seems to be his normal self.  He is kicking and talking as he always does when he wants to get out of bed.  Thanks everyone for the notes of encouragement.  I wish there was some miraculous news to report, but we have been told by many people that the results of the treatment will take months to appear.  I did speak with another father yesterday.  This is his second trip here with his teenage son who suffered a near drowning after a car accident.  His son was minimally conscious until a few months after their first treatments and can now roll over and smiles in recognition of his father’s voice.  So it looks like we may have to wait to hear something new, but maybe Ryan will surprise us.  If you have the chance to call and talk to Sarah, I’m sure she would love to hear from you.  If you know someone who may be interested in learning about what Ryan is doing, you can share his post with them.  The first big treatment is done.  We have four more spinal ( the best, but most painful) treatments and two more IV’s till we come home.  Take care.   Dan, Suzanne and Ryan   

Hi again,Ryan just finished his third acupuncture session, and is having a massage as I type this.  Tomorrow is the big day, the spinal stem cell treatment.  We are very nervous, especially about the side effects.  Some patients  have had vomiting, severe migraine headaches, and body aches for a few days after. Ryan must stay still for 6 hours after the treatment.  We will have to have him sedated.   To give you and idea of   Ryan’s daily routine:  9am-10am a group of doctors visit him.  10am-11:30am physical therapy,  11:30-12pm electric wave treatment, 12pm-1:30pm free, 1:30pm-2pm acupuncture, 2pm-3pm massage.  We then gather our stuff and go back to the hotel to give Ryan a hot bath and chill out before he has to go back to the hospital around 8pm.   On Mondays he has IV stem cell treatments,and on Fridays spinal injection of stem cells. He will get a total of 8 treatments.   This takes place in the afternoon at 3:30pm.  The schedule keeps Ryan busy and leaves him tired at the end of the day. Ryan really likes his therapist Kerry.    He also enjoys hanging out with the other patients. So far Ryan is adapting very well.  He has been sleeping for the most part at night too.  Sundays are the only free day for patients.  We will go on a field trip on Sunday with one of the drivers.  I really like  the drivers.  They greet Ryan every morning and shake his hand.  The only draw back is that they speak NO ENGLISH!  The translator we brought has really come in handy!Once again, thank you to everyone for the daily notes.  We look forward to news from home everyday.  We do receive emails to our email address, but we are blocked from sending out  email.   Dan is at the store buying fruit. We are going to make a fruit salad with bread for dinner in our hotel room. If I eat anymore rice or pizza, I will be sick! Dan will update you tomorrow on how Ryan’s treatment went.  Keep your fingers crossed he doesn’t have any severe side effects.Suzanne 

Hi everyone,Thanks for all the notes from home, we really appreciate all of it.  Ryan and I are hanging out in the room waiting for his second acupuncture treatment.  Dan is at the R-mart buying snacks and beer.  He has organized a “gathering” for tonight for patients and family.  We are having pizza “again”.  He is going to attempt to make queso in the microwave.  I have no idea how he is  going to get  his hands on meltable yellow cheese and salsa!  I am very home sick and wish we could do this at home. The  american government needs a kick in the ass for not pursuing this treatment.    The people at the hospital are very nice, Ryan’s doctor is awesome, but it is very hard.  I now know how hard it is being a minority and having a language barrier.   The  hospital drivers are  very nice, we gave them San antonio Spurs hats and tried to explain who the Spurs were.  I gave one of the drivers a zippo lighter (many smoke here).  I showed him how to use it, and almost lit his jacket on fire!  We were told to bring american made gifts.That’s it for now.Suzanne and Ryan