It was two months ago and a couple of days when we retured home from Qingdao. I had the attitude from the beginning of our adventure that we would keep our expectations in check and take any improvement we could get. I guess my goal or greatest hope was that Mick could see enough improvement to be able to continue to live at home. His doctor at home told him in the fall last year that he needed to be looking at an assisted living facility, or live-in caretaker as he was getting to the point where he could not live alone. When we found out about Beike and the stemcell procedure I must admit, I was skeptical to say the least. But I looked at it this way. Ataxia is an incurable disease and there has been very little, if any, progress in the United States. Mick is 58 years old, and running out of options. It would be like a person with cancer hearing of a drug that has shown “possible” aide in fighting it. I asked myself, “if that were me, would I take the drug?” I think we all know that answer. With that being said, as I said very early on in my blogs, we had nothing to lose, and anything we got would be a plus.
Well, our journey continues. We went to Qingdao with Mick being all but completely wheelchair bound. Two weeks ago, Mick sent me an email saying that he was able to walk three blocks with the help of his walker. Two days ago, he sent me an email saying he is taking his first steps with only the help of a cane. When I read that email, as I am right now, I clouded up with tears. I am still being extremely cautious in my expectations, but I must say, we have met my minimum hope and I am now beginning to feel that from this point on, anything we get will be the icing on a good cake.
I think we still have a ways to go before we can say just how much the stemcell procedure really helped Mick. Since we have been home, I have read several stories about the cautions of stemcell treatments, such as one involving a National Football Leagure quarterback by the name of Peyton Manning who went overseas to get the treatment. Having lived through this with my best friend, I almost get angry when I think that this procedure could and should be done here at home. No babies died for this procedure, Mick has no strange parts growing from his body, and all of the other things that have been said. What we have now is hope, which is far more than we had a year ago when his doctor said he needs to go to a home.
This has been one of the greatest, if not the greatest experience of my life. I would hope that anyone that reads this blog, can truly understand what our plight was, where we are now, and our promise for the future. And I also hope, that people stand up and speak up for the possibilies of stemcell research. There is a long way to go, but the hope is there.
Don
October 26th, 2011
I just got an awesome email from Mick. We have been home nearly three weeks from our visit to Qingdao. As I mentioned, the trip home was pretty hard on Mick. He left our house very hopeful and positive. Well, he wrote me yesterday to tell me that he can now stand out of a sitting position in a chair without using the armrests. He also went on to tell me that he is walking two blocks a day with the help of his walker. Those are definete improvements from where we were prior to our trip. I am incredibly excited to hear this from him. We still take one day at a time and will take anything we can get.
I laid out a goal for him for the next 13 months. In our younger days, we used to hunt deer in the Blue Mountains of North Eastern Oregon. I told Mick that if he can get back to be able to go back to the place we hunted, I would buy and out-of-state hunting license, since I live in Washington, and take him back there. So, the challenge is on! I sure hope I have to pay for license and deer tag!
To all that read this, keep up the hope and never say can’t.
Don
September 7th, 2011
Well, 24 hours, four different airplanes, no sleep due to rough air, a miserable time at LAX, a sick Mick, and we are home. We were doing good up until about hour 4 of the flight across “the pond,” then we started getting bumped around. No way to get any sleep. Then, we land in LA and got stuck on the taxiway for 45 minutes, which about caused us to be late for the Seattle flight. Thanks to a guy named Poncho, we were able to use the advantage, what little there is, of Mick being in a wheelchair and move to the head of all the Customs and Alaska ticket lines. Mick was shot! It was all I could do to keep myself going, let alone getting him on and off airplanes. We got home to a gathering of friends and family and BBQ ribs, chicken, potato salad, and fresh corn on the cob. Ah, the simple things of life. But, before bedtime, Mick got sick and did not do well. He was up and doing pretty well this morning. He headed south to Baker City about 9.
This blog is coming to you all from our cabin believe it or not. We headed up right after Mick left. It was great to see turkey’s and other critters on the way up. I didn’t get much sleep last night and plan on some good naps and our old soft cabin bed to get me recovered, not to mention some good mountain food and maybe a cold one or two.
What an experience the last month has been. It was actually sad to have to say goodbye to Amanda, Joyce, Mary, Jason, and of course our driver Charlie there at the hospital. I was an emotional wreck between that and knowing what I had been able to do for Mick. Today, when he left, it was really tough. I must say though, his speech was better and he didn’t have near the trouble getting down the steps from our porch. And, he piled right into his truck. Some of that may have been him being anxious to get home, but it was much better for sure.
I will be sorting through and organizing our pictures from the trip and look forward to sharing our adventure. I plan on coming on this site and posting blogs over the next weeks and months as I track Mick’s improvement, so check back once in a while.
Again, on behalf of Mick and myself, I want to thank the staff at Beike and the hospital for all they did. It was incredible. I also want to thank all of you that followed our journey and kept us in your thoughts and prayers. I know our Higher Power took care of us for the past 31 days. And last, thanks to my wife Nancy for her support for not only me, but for Mick and he and my friendship.
Please keep in touch,
Don
August 19th, 2011
Well, here it is, the last full day in Qingdao. Today has brought disturbing news about another family that I cannot share on this site. Nothing life or death, just a breakdown of a family that we became close to. It has been on our minds all day and we will leave always wondering. We hope to hear from them in the future and hope and pray for the best.
We just had the most increbible experience. This mother, son, and their good friend from Poland just came and we got a chance to speak to them. The friend was the translator. The son, Jacob, 13, just so happens to have Ataxia! He was excited to meet Mick and there was a special bond immediately. He asked if we played poker of all things, so tonight we are doing the Texas Holdem thing. Can you believe that! So, our last night will have a very happy ending to our trip.
Well You All, this is our last blog from Qingdao. We want to thank you all for the prayers, thoughts,emails, and blog replies. You have been a real blessing to us on our journey and we look forward to seeing you all and sharing our pictures and experiences. I especially want to thank my supervisor, Cathy Malzahn for her support and giving me the nudge to stay the entire time. And most of all, Nancy McDowell. Nancy has been a good friend to Mick and supported our friendship to the max. This journey could not have been without her.
Thanks again, and we will see you soon.
Mick and Don
August 17th, 2011
Ya know, I was going to title this “Boring,” then tonight came. The whole day, up until 6:00 tonight has been the most boring day yet. I got a call from Guiness saying I had won the title of the most losses at solitare, in a 30 day period, out of 2,000 games! About 6 tonight, everything changed. Our whole group of English speaking families got together for the evening “feed bag.” Mick and I enjoyed our left over sweet and sour pork over rice from the noon delivery. We were short for rice, but some ramen noodles fixed that. I’ll bet your saliva glands are running wild with that one. Hey, it is, what it will soon be, was. We are alive! Anyway, one of our English Speaking Friends, has a very unique way of dropping the big F-word. I have never been a proponent of that incredibly diverse word, but, am no angel for not using it. OK, I confessed it. But, I must say, I have been very selective on my audience, as my wife will verify. Anyway, when a conversation comes to a point where not a single sentence can pass without the use of the word, and the audience includes children, it is outta bounds. I know, I am a sexual harrassement instructor. But, even when I wasn’t, it is a huntin camp word and I will admit, I used it a time or two. I came by it honestly. OK, I was on my soapbox, enough of that.
Today was pretty tough. The Brits are leaving in the morning and that is a bit of a downer. They have been great friends and I will miss that Bradley. What a great kid. Kids are goats. What a great child I should say. I have have been a grandfather figure, along with Mick, and it was awesome. I hope to have more of my own in the not too distant years to come. But these little tykes cling to Mick and Me and it is so neat. Some with disabilities and some here with some that do have them.
Well, we are down to hours. Tomorrow will be my last blog from Qingdao. I have started the packing process and pretty much have it all figured out. I do feel that Mick has progressed enough to make the trip home easier. I will be writing a special blog tomorrow, so I had better stop for now. Please keep us in your prayers and thoughts, as we will you. Don
August 16th, 2011
With only three nights to go, there is this strange final bonding goin on here in the VIP Ward. With all three families of our key group leaving in the next three days, it’s like we are already feeling the closure and making the most of every moment and sitting in the commons enjoying the friendship. I doubt if there is anyone more homesick than I am here and yet even I am having a good time, which is great. It takes my mind away from all my worries of packing and the four plane flights on Thursday and hoping everything goes as planned. I must say that flying with children is not something fun, but flying with a disabled person in a wheelchair provides it’s challenges and worries. But, enough of that crap!
Today was just incredible for Mick! He slept great last night, his visit with his doctor went very well, and it just got better. His PT was the best to date! He did things during his PT that he as struggled with the past four weeks and he did them with ease. Today, he spent less time using his wheelchair since the day he got here! He came to and from the commons using his walker. He did go up to get his last IV using the chair, only because of the stairs and it being easier in the elevator. His IV went perfect, other than being late. He only had a short nap and has been out socializing most of his free time. And, get this, while playing cribbage during our 10 games today, he has not hardly struggled a bit with the pegs in the board. I have spent the last half hour going over my thoughts on this to be sure it wasn’t wishful thinking, but I can honestly say, I see some difference. It is all kinda taking me back for a minute here. I am confident we will see more of this, but am still keeping my expectations in check. I know in my heart, after what I have seen, this journey was worth every moment in so many ways.
We are flooded with new people and with so much going on it is impossible to keep track of them all. More Americans, from California and others I have no clue. I know many of you go on vacations to places that do not speak English, but picture going to a place where they speak not only a different language, but as many as 6 or even 8. Try to say hi 
. Oh My Gosh, what an experience! But, there is a common. A simple smile and a wave and we are friends.
Well you all, I think I had better get back to job it sounds like. I am glad to see this all ending on such a high note and yet know that there is no place like home. Bless you and I want to leave you with a very solemn thougtht. Be so ever thankful for what we have. don
August 15th, 2011
Well, as you can tell, I missed blogging Saturday. But this time, I had good excuses. Saturday was one busy day. We are on our regular schedule instead of having the day off. But, I had some cooking to do, which is not easy here. We started out the day with our French Toast, which was hard to get to all the cooking utensils and burners and all with everyone in the kitchen at the same time. I finally got that task complete, and it was time with the doctor. From there it was off to PT, which was Mick’s best so far. He is showing some improvements and Dr. Tom was pretty happy with his progress. From there, it was lunch time and I had some errands to run following that. Then, it was accupuncture and shock treatment. While Mick was in doing that, I was working on preparing our dinner. The plan called for breaded pork steak with backed (micro-waved) spuds and corn on the cob, also in the micro wave. One of the parents had said that the corn would turn out perfect. Wrong answer. It flopped big time. It is the only time in Mick and my history that he pushed food away. It was bad. Now let me tell you, cooking the steaks on these induction burners, or whatever the heck they are, is a challenge, if I haven’t told you before. The heat goes on and off. What a nightmare! Plus, the steaks aren’t anything like we have at home. They are cut from the strangest pieces of meat. I think they are meant to be cut into cubes and added to something else like veggies. Kirstie had some flour and with some garlic powder, salt, and pepper, I made it work. There is no regular seasoning salt to be found. The spuds did turn out good so it was edible except for the corn. This morning I cooked out bacon and eggs with toast so all is well today.
Following dinner is was Karoake time. We only stayed a couple of hours but had a good time. Lots of new people and the music was better last night. The couple from Hawaii added a lot and they ended up staying until 11 with a couple of the coordinators.
Today, we finally got to tour the brewery. It was pretty impressive I must say. But, it was not too disabled friendly. We had a really scary moment getting Mick down two sets of escalators. He attempted to stand up and Charilie too his chair. At the bottom of the first one, he lost his balance and instead of just sitting down, he tried to hang onto the handrail, which kept on pulling him. It was just awful! We ended getting seperated from the British family that went with us, but Charlie, our driver, stayed with Mick and me. He had the tickets for the free beer and peanut samples and there I was. Stuck with having to drink everyone’s beer. Now, that would not normally be a difficult task, however, due to the public toilet situation, which I will tell you about when I see you, I restrained myself and only had two of the small samples. Leaving that beer sit there on the tables felt like a crime, but, it was served warm of course, so no real biggy.
From there we made a quick McD’s run and ended up at the G-Mo Market. A large group had gotten together from the hospital and we ran into them there. The big thing was the women and the purses. They were like a flock of pidgeons hitting some fresh spilled grain. These purses were like the Channel and some other French name and were going for about $75 American. I know, a bunch of you just gasped to think I didn’t bring a couple home to the spouse. But here is the deal. Although they looked like the real McCoy, I understand, they were copies with the names on them. It’s like Rolex watches going for $100, when they were also copies. But, the name was on them. Hmmm… I did barter on a bag that we needed to bring home some stuff. It started out at 160RMB and I got it for 120RMB or about 20 bucks. It’s a geat bag too.
So, there you have it. We have four nights left, counting tonight, and are getting pretty anxious to come home. Mick gets his last injection tomorrow, then a couple of routine days. We take off at 9:45 this time Thursday and land at 6 pm Thursday in Spokane. Take care you all and I look forward to seeing you. Don.
August 14th, 2011
Well, we had a good gathering tonight with lots of pizza for our going home get together. The people we have gotten to know, for the most part, joined us and it was pretty good. Mick has been tired a lot today. We went to the RT Mart, his first time, and he enjoyed that. I don’t know if I have told you about the shopping carts here, but they are quite the thing. All four wheels caster! Now that might sound a bit strange, but they are actually quite effective, especially with how “on the go” these people are. You can just wheel sideways when you see something you want. Now picture this. I am pushing Mick in the wheelchair and he is driving this dude. So, I steer him and the cart goes whichever way I take it from the back. Pretty neat. So, here we go up these escalators that are not steps but are flat going up. They have these groves on them that the carts latch into and are solid. When Mick and I get to them, with the cart in front, it clocks in, I he locks his breaks, and up we go! Pretty neat! Anyway, we survived the taxi ride each way and had a good time.
For lunch, we went to a place called the Beef Steak. They really try to copy an American Steak house, and actually, the steak was good. Mick went with the cod, but it wasn’t quite cooked well enough, and we had no way to tell them. They served the steak with like Spagetti noodles and an egg. There was a good soup with a sweet bread and a small salad bar. It was overall not bad. We got some discount coupons and will go back.
Not much at all from home. Rumor has it that my son, David, inflight refueled the Blue Angels on their way to Fargo, North Dakota for an airshow. I did get some pictures but have no idea where they came from. Magic.
Most of the original Brazilians left for home this afternoon as three more families came in. We also got another Polish family and several Chinese. This place is buzzing.
Five full days to go. Mick is getting pretty homesick himself today. He seemed to have the slows and had three naps. Without any schedule to give him much to do, I think he was bored too. We have watched all the movies, played cribbage till we want to burn the board, and don’t want to go anywhere. It’s time.
Well you all, I think I have said it tonight. We have a full schedule tomorrow and have karoake tomorrow night. We are even bored with that! Anyway, miss you all. Don and Mick
August 12th, 2011
Since this is our last weekend, along with several other couples, we are planning some events. Mick has a screwy schedule having Friday off, and the routine on Saturday. So, Friday, tomorrow for us, he wants to go to the RT Mart as he keeps hearing about it and hasn’t gone. We are going to get our groceries and some other stuff for the doin’s here. Friday night, we are having our going away party with the other couples and are doing pizza and beer here at the hospital. Beer at a hospital! Nope, not kidding. In fact, they sell it down stairs along with hard stuff. They don’t allow Mick to drink, which he really doesn’t anyway, but the rest can indulge. Saturday night is the Karoake thing with all the new folks. I am about karoaked out, but hey, beats sitting here watching another rerun movie. I think Sunday we are going to the Brewery according to Mick. They say it is a great tour and since Qingdao is noted for the Tsing Tao Beer, we thought we should see it. All this booze stuff….. nah, it’s all good.
Mick was complaining of his legs aching this morning so he skipped PT and had a double run of Occupational Therapy treatments. He is doing much better and his speech is good today. We have to get some more of his pain pills refilled again tomorrow as they only give him half the dosage he needs. So, Dr. Lisa is getting him more.
I have been seeing some marinated steaks at the RT Mart, so I think we will do that with a nuked spud. No mushrooms though. Well, they actually have them, but I am just not sure what kind they are. Might do a corn on the cob too. A lady we were just talking to says that nuking the corn works really well. hmmm….
Today, the peanut guy had his wife down there selling fruit in the parking lot too. So, I was coming back from doing some shopping at the mall and thought what the heck. I stopped and picked out some nice grapes. These are the kind of grapes where the outside kinda slips off and are they ever good. Anyway, I quickly realized that they have a real gig going here. Neither spoke any English, and off course me, no Chinese, which hasn’t been a big problem at all. Anyway, he brings out this funky scale and to show me how much it came to, he showed me using his own money. Now, I figure I had right at a half pound, or a little less than 1/4 kilo. He showed me 12 RMB, so the way I figure it, I got a half pound for almost $2. Not too much cheap about that! Oh well, I have wanted to buy something from the guy just because.
Well, I had better knock off here. 7 more nights and counting down! Take care, Don
August 11th, 2011
Sorry about that! We got several new groups of people in, along with a lonnnnnnnnnggggggggg borriiiiiiig day yesterday with nothing really to say. Me, nothing to say! Ha! OK, I must admit too, my moral was in the crapper! Dang that horescope! That’s a subject for discussion in person around the campfire, if you know what I mean.
Mick has had two great days in therapy! He has been standing up on his knees vertical and doing it with a bit of a snap. Did you hear that! A bit of British there. We are having the best time with the folks from the UK. They are our new sanity. Took a great video of Bradley doing is foot thing and the radar. I am going to get another with him talking. You all will get a hoot outta that. Now, I am talkin Eastern Oregonian again!
Last night we got to spend some time talking to our representative in a group setting about the stem cell stuff. Mick and I were just amazed at the things he was saying. I sent an email to a local TV station with this whole story, hoping that they might do something with it. My purpose was to give this procedure some exposure for children with situations that stem cell treatments might be able to help. These kids are incredible to say the least. I know I keep saying this stuff, but that is how much this has impacted me. When I get home, I am going to tell everyone I can find about this. And, it is only in the beginning stages. Even the local hometown newspaper in Baker City, Oregon should be doing an article about Mick and this whole thing. The stories keep coming in. To take a child that could see any light at all and now they can see light and colors! Picture this. A child that does not even know when it is day or night and doesn’t know when to sleep! Picture being the parents! And now, some of these kids have gone from being able to see a foot to normal reading distance! I know that much of this is still in the experimental stage, but this is all some of these people have, including Mick! Am I on my bandwagon…. You bet I am! Google “Peyton’s Fight for Sight” and see what people did to make it possible for him to come here. They are the family from Minnesota.
OK, I beat the drum on that one. This place, as far as the staff here, has been a flurry of activity. So many new people have come in that I can’t keep up with them. We have a new couple from Texas, from Hawaii, and more on the way. The couple from Hawaii comes here with the husband having a sight problem. He is a Mr. America as they own a health spa. I wouldn’t want to make him mad unless I knew I was outta his sight range, and even then I don’t know if I could out run him.
Mick just got his last lumbar injection and came through it like a breeze. I have to say, he is a great patient. Not a problem. His spirits are up, despite his caregiver being a bit down. But, his caregiver, me, got to talk to home this morning and is on his game again. Three weeks down, one to go!
I am a bit meloncholy (sp) tonight and want to spend just a minute talking about friends. I know I have talked about this before, but today I got to spend a few minutes alone out walking and regain the real purpose of why I am here. Some of you may have heard me say this before, but my Granddad Mann sad once that a man’s wealth is not measured by money, but by his friends. Mick and I both are millionaires! As most of you know, for the most part, Mick has no family. But I do not know of a richer man when it comes to friends. In fact, his friends back in Baker have been his main physical and morel support functions. For me, to be able to do this for Mick is such a privilege. I am a rich man!
Well You All, I need to go spend some time with the big guy. He is resting on his side following his injection and has to stay up a little late tonight. We are counting the days till we leave, but also anxious to see some improvement, which we have the last two days. I hope all is well at home and also hope you all are thankful for what you have. More conversations about. Take care and keep us in your thoughts and prayers. Don.
August 10th, 2011
Previous Posts
