Stem Cell Treatment #2
2 comments July 28th, 2007
Our second outing
Jim has been having a great day today. Energy is up and he’s done a great job in physical therapy including executing a perfect, unassisted turn on the parallel bars. This is a major accomplishment for someone who has spent the better part of the past year in a wheel chair.
In fact he felt so well that we accepted an invitation to go out to dinner with a supplier and friend of Jim’s, Liu Shu Qing. After a two hour flight from Tianjin, Shu Qing arrived at the hospital with a beautiful bouquet of white lilies and red roses. Besides bringing a beautiful scent to our room the flowers had anothr positive impact on us. While getting water for the vase I discovered that the valves are backwards in our shower: red is cold and blue is hot! Tomorrow we will have our first hot shower since arriving on the 20th floor. No more bracing and shouting “refreshing” as we step into the cold water!
Shu Qing has a very engaging personality, and within a few minutes she had instructed all the doctors and nurses within earshot to “take especially good care of Mr. Jim”.
The restaurant we dined at was an interesting mix of cultures. Movie posters and a fake red carpet (a la Hard Rock Cafe) led you to the elevators, flaked by two beautiful young “greeters” dressed in cobalt blue evening gowns. We stepped out of the elevators to the screeches and howls of a herd of young children chasing each other through a brightly colored plastic playground (a la McDonald’s). Apparently this is to allow their parents to have a peaceful dinner in the adjacent room. The restaurant was elegant, with gilded walls and huge mural copies of the Italian masters, but with a Mel Brooks twist: the angels were spitting water on Venus. And then there was a gigantic glittering disco ball….
We had a nice dinner with Shu Qing and then went staight back to the hospital. A slight touch of “Chairman Mao’s Revenge” visited us the next morning…nothing serious but we were really careful about what we ate for the rest of the day.
Nothing is wasted here in China. When people leave the hospital after their 30 or 45 day stay, they leave their unused supplies in the small kitchen room. Yesterday I scored a half a can of Chinese Pringles and a box of Kraft Mac and Cheese. Imagine how homesick you have to be to be excited about boxed Mac and Cheese! But it was comforting to have something “Yank” to eat when your stomach is lurching and turning.
Add comment July 28th, 2007
A few ups and downs
The second day after Jim’s first stem cell treatment was a little rough, like the “morning after” consequences of a good party. He was very tired, weak and the tremor had returned first to his foot, and then to his leg by the end of the day. It’s not nearly as pronounced as before, but it’s back. The good news is that “James”, Jim’s physical therapist, has him stretching, moving, walking on parallel bars and even trying a few stairs each day. We can see improvement in Jim’s posture and movement each day.
The team of doctors brought Jim’s MRI during their rounds this morning and read it for us. There is significant cerebellar atrophy and some brainstem atrophy as well. Now we knew this, but it’s still a little sobering to see it in black and white. After the troops left I went over and sat on Jim’s bed. “Well,” he said, “I guess it’s official…I need a brain transplant! “Where can we find an ‘Abbey Normal’ brain?” (ha ha-quoting Young Frankenstein which we just happened to bring with us to China). We may have to watch it tonight. Jim’s strong spirit and sense of humor continues to amaze me.
The doctors have told us not to be discouraged. The new stem cells continue to grow for up to three months after they’re implanted, and Jim has had only one of four treatments. After the stem cells are administered they start an IV of nerve growth factor. This helps the new little stems target neurological damage to repair. if Jim had heart disease they would use blood vessel growth factor. This science is truly the new medical frontier.
There are many children on the 20th floor with Cerebral Palsy, some highly functioning and others severely disabled. Most are from Hungary and Romania. It’s inspiring to watch the devotion and love of the parents as well as the kid’s courage with it comes to the sometimes painful physical therapy and scary acpuncture. The physical therapists work with the kids for hours a day, patiently tring to pattern normal muscle control and recognition into their tiny bodies. Some of it is painful, and they often cry. They are usually intrigued with Jim in the wheelchair…an adult in the same circumstance as they are.
Yesterday there was a young girl from Romania who was terrified of the physical therapy room and equipment. She clung to her mother sobbing until the nurses asked the mother to leave the room. After a lot of coaxing and hugging, the nurses convinced the still crying child to start her physical therapy moves. When she completed her first move I started to clap for her and she looked up and stopped crying. She smiled at me and pointed, and the nurse asked if I would stand by her side. The little girl reached up her arms and gave me a kiss. It was so sweet…
Then she continued her therapy, looking around to me for claps and encouragement. I was feeling very Mother Teresa-ish when her mom walked back into the room and told me in broken English that her daughter was drawn to me because I looked so much like her grandmother! Grandmother? Wait a minute, I thought….didn’t you mean beloved auntie? There must be some mistake………… Grandmother?? I must have looked a little confused.
“Your hair”, she motioned, “is same color and style…”
I’m still a little shocked by it. Kind of like the first time you realize that you’re really 30. Or 40 or 50. But Grandmother?????
Bren…dig out those boxes of Lady Clariol that you’ve been trying to get me to use…I’m ready!
1 comment July 27th, 2007
Jim’s First Journey out of the Hospital
Jim woke up feeling great on Tuesday morning. The dyskensia had not returned to his leg and he was ready to throw his pounds of meds in the trash. I convinced his to cut them down, but not stop altogether. When you’ve been on so much dopamine for so long I don’t think it’s wise to just suddenly stop. So he reluctantly took half of his morning dose and wanted to venture out to a grocery store about a block and a half from the hospital.
Even at 7:30 in the morning it’s hot here…steamy. I was pushing Jim in his wheelchair down the street on wide sidewalks that have rubber mats installed on them to keep people from slipping in the monsoon rainstorms. Unfortunately the sidewalks are not entirely wheelchair accessible so twice I had to get him out of the chair, down a rather high curb, lift the chair down, put Jim back into the chair, then repeat in 20 feet.
Rows of short cement pillars kept us from approaching the store. I guess these are to discourage cars from going up on the sidewalks. Bicycles, motorbikes and pedestrians can pass through, but not a wheelchair. After pushing Jim along the wall for a few minutes, contemplating how to get over it, a young man motioned to go around the building. Yes, there was a small opening that we could fit through!
The store is multi-leveled, connected by escalators, but more like the people movers at the airport, set on an incline. Going up was no problem. I set the brakes and braced the back of the chair with my body. Going down laden with groceries was a different story…as I struggled to hold onto the wheelchair, a Chinese lady half my size came up and grabbed a hold with me. The people here are so kind.
We strolled past a display of roasted, blackened ducks, hanging like criminals by their necks (ok, we watched “CAPOTE” yesterday), and huge bins of different dried fish and sea vegetables. Produce that is weighed and priced in the aisles after you put it into bags. Butchers doing the part of butchering that we never see in the States. Aisles and aisles of brightly colored packaging without our tendency to put a photo of what is inside on the outside of the box. Coke’s are recognizable by their distinct packaging, even in Chinese. As Jamie used to say when she was little: “Dad, I smell a coke!”
Jim had a sudden need to use the restroom, and having had this experience at the airport, I knew that the toilets in most public restrooms here are holes in the floor…not exactly good for a disabled person. So we had to hurry back to the hotel in high gear. Down the escalator (with assistance from an angel), out the side door, around the building…and to save time I made the decision to push Jim in the street…in the far right lane reserved for bicycles, motorbikes and cycles. I hugged the gutter to keep from being mowed down…trotting as fast as I could…Jim clinging to a six pack of Coke in his lap. We must have been quite a sight.
We made it back to the hospital and then it took 15 minutes to get an elevator up to the 20th floor. The elevators here are another story all together!
Jim is resting awhile now getting ready for his afternoon workout with James. James intends to get him up on the stairs today.
Add comment July 25th, 2007
Stem Cell Treatment #1
Jim has just been wheeled back into our room from his first spinal stem cell infusion. We were both a little nervous about it and I think Dr. Mike and his staff sensed that and were very reassuring all morning.
Jim is awake (they don’t actually put you out for the procedure, you’re just kind of transported to la-la land for awhile. He came back in the room quoting “Deadwood”. I only hope he wasn’t quoting it in the operating room!
We put some beautiful Tibetan chanting music (thanks to Pamelah and Bill) on Jim’s ipod thinking that it would be relaxing to listen to while he has to lay perfectly still for six hours. But in true Jim form he is greeting the new little stem cells with Eric Clapton! At least they’re getting an introduction to authentic, 100% pure Jim Thrower!! Now they know what to expect.
I did refuse Jim’s request for KFC (yes, they have one here) for dinner when he’s able to eat. We’re not going to posion those little stem cells! Instead we’ve ordered vegetables, tofu, chili-chicken and rice. There could be some chocolate involved….
There is one pretty amazing thing…Jim’s dyskinsea in his right leg is completely gone. It was quite pronounced just before he went into surgery and I was worried that it might affect his ability to lay still after the procedure. It could be the relaxation meds, or coincidence, or the miracle of stem cells…we’ll see in the morning.
7 comments July 23rd, 2007
A Sunday visit from President Meng
This afternoon President Meng, Greg and Casey from Huisong came to visit, bringing lots of treats including some wonderful fresh fruits, breads and breakfast cereals (a bit hard to find here). Their kindness and concern was very touching. We are very blessed.
Tonight we had our “last supper”, as Jim will have to fast for nearly ten hours tomorrow because of his first spinal stem cell treatment. No food for four hours before, lying flat without moving for six hours afterward. I may have to go buy a Snickers (yes, they have them here) and dangle it from his IV pole as incentive to be good!
We’ve stuck close to our room this weekend so Jim could rest. There’s a terrific electrical storm outside our window tonight, with crashing thunder and lightening. The windows are rattling.
We feel everyone’s love, strength and support as we face what tomorrow will bring.
Add comment July 23rd, 2007
Testing, testing
The first few days were testing days for Jim. We met his team of doctors during rounds the next morning, and then the tests began. Blood tests, urinalysis, physical evaluation and MRI were all ordered.
Then we met James, the Physial Therapist who is in charge of Jim’s rehabilitation and acpuncture. James is excellent and shows no mercy when he’s working with his patients. He actually gets on the mat with Jim at times to demonstrate a move he wants. Yesterday they both were on their hands and knees, lifting alternate legs and arms, kind of like bad synchronized swimming on dry land. Where was the camera when I needed it! Jim spends several hours a day with James doing physical therapy, acpuncture and electric wave therapy. Pamelah and Bill’s Refuge CD is helping him survive….
Oh, and the wheelchair tire was repaired.
1 comment July 22nd, 2007
We’ve arrived in Hangzhou!
Probably the most interesting part of the trip was getting through the airport in Beijing, collecting our massive amount of luggage, going through customs, re-checking it, having to find our next gate and go through security twice (once after they took away Jim’s wheelchair and checked it). The language barrier was huge! Apparently trying to take your own wheelchair to the gate causes a lot of suspicion. (And the wheelchair got a flat tire during the marathon).
Thankfully the hospital picked us up at the airport in Hangzhou and almost exactly 24 hours after leaving Sonoma, we were getting into bed in Hangzhou.
Grace met us at our temporary room to make sure we were settled and knew what to expect the following morning.
Add comment July 22nd, 2007
Hello world!
2 comments July 20th, 2007
