4-6-09
We finally made it home Wednesday night about 1:00 a.m. Rick and Rachel (Joey’s girlfriend) picked us up from the airport and we stopped at Denny’s to eat. We were exhausted by the time we arrived home. The next couple of days were kind of hazy from the jet lagg but all is good now. Joey’s friends had a ‘Welcome Home’ party for him on Saturday night so I’m sure he had a great time. As for me, I enjoyed staying home with Rick and my dogs. Today was my first day back at work and it really is good seeing everyone again. I am in the process of getting the Physical Therapy set up for Joey. His goal is to be walking by his next birthday, which means some pretty intense workout between now and then. I will keep everyone updated on his progress.
More later…
April 7th, 2009
3-31-09
It is Tuesday night and Joey and I have had an emotional day. Saying goodbye to all of the people who have been so caring and wonderful to us both for the past 2 months is more difficult than we thought it would be.
We woke up this morning and stuck to the usual schedule: PT at 9:00 a.m., lunch, Joey’s two IV’s, OT at 1:00 p.m. then TCM at 2:00 p.m. I had been getting things ready and packed while Joey was doing his thing. Finally at about 3:30, I realized that I was going to need another suitcase. I ran to Greta’s office in a panic and told her I needed another suitcase…She told me not to worry and we took a taxi to the nearest mall. She was a bargaining guru. We got a nice, big suitcase for a very cheap price, hahahah, THANK YOU GRETA!!!! We laughed all the way back to the hospital.
Joey was on his computer and I was still packing when Panda and Eric, the two guys from the hospital cafe, came to give Joey a gift. They brought him a bamboo chinese scroll. It is beautiful. I think we all cried when we told them goodbye. Earlier today, Ali, one of Joey’s favorite nurses, came by to give him a gift as well. It is a string of chinese zodiac animals. Very cool. We love you Ali. Dodo, another very special nurse, gave Joey a pair of chinese carp to remember her by. Yesterday, Greta gave Joey his very own chinese tea set made of chinese pottery. I know that Joey will display it and use it proudly as he thinks of Greta….. Greta, you have become family to us both. Thank you for everything you have done. You are truly an angel and we love you very much…..
I cannot say enough about the people here at Tiantan Puhua Hospital. The doctors, nurses, therapists and the coordinators are the most wonderful, caring and inspiring people that I have ever had the honor of meeting. They, every one, go beyond the call of duty every single day, and bend over backward to do everything in their power to help their patients. (At one point, Joey and I even talked about moving here to Beijing, haha). Getting to know these wonderful people has touched our hearts forever. We are eternally grateful to them, and hope that one day we can see them all again. (Even the stray dogs on the streets of Beijing look happy)….. As much as we have missed our family, friends, pets and american food over the past two months…we will miss these gracious people just as much.
Tomorrow morning Joey and I will get up and Joey will meet with Mark one last time for PT. We will say our final goodbyes and then go to the airport. Greta will see us off and that will be the hardest goodbye for me. She has been my rock through this entire journey.
I will continue to write about Joey’s progress and to keep you all informed. He has set a goal for himself and wants to be walking by his next birthday (Oct. 22nd).
None of this would have happened without the financial, emotional and spiritual support of our family and friends back home, and even the people who gave to the cause, who we have never had the privlidge to meet. Every single one of you has helped to prolong Joey’s life so that maybe one day soon we will see a cure for Friedreich’s Ataxia.
With a full and heavy heart, Thank you to everyone.
March 31st, 2009
3-30-09
It has been a great Monday….all of Joey’s doctors came in this morning to evaluate Joey’s progress. They have decided to proceed with one more SCT IV. We are very excited. Four was supposed to be the limit but they want to do everything they can before we have to go home. Today at 3:00 p.m. Joey will receive his 7th SCT, WOW!!!! I am sure it will be as painless as the last. The people here are angels.
Also today we finally received the package my mother sent. It had snacks, food, pajama’s and a few clothes, but more importantly, gifts for all of Joey’s nurses, doctors, therapists and friends that we have made since being here in China. Everything was wonderful. I know everybody will love their gifts. Thank you mom!!!!!! I love you. That really helped me ALOT!!!
Two more days until we fly home. More later………
March 30th, 2009
3-27-09
Today is Friday so there is another weekend upon us. Joey and I have no plans other than to clean our room and get ready to come home. The IV SCT was a success. There was no pain or side effects. They are even thinking about giving him one more. We find out on Monday. Joey seems to have more energy and his eye sight is a little better today than yesterday.
Last week on Monday, my mother mailed us a package (via FedEx) and we are still waiting. It is stuck in ‘customs’ and we may not be allowed to have it. I wanted to give all the doctors, nurses and therapists a gift from Texas so my mother bought everything for me and mailed it so I could give them their gifts before we go home. I hope to receive it on Monday, if not I will have it sent back to my mother.
We have 5 day to go until we fly home. I can’t wait!!!!! Joey has made some great friends here and so have I. We will most definitely keep in touch with everyone we can through e-mail.
Have a great weekend. More later…..
March 27th, 2009
3-26-09
Last night Joey and I had a cup of my new delicious chinese tea. We absolutely loved it so we had another, then another, then another. Needless to say we drank way too much tea because neither one of us could sleep at all. We were up until 4:00 a.m. It seemed like we had just fallen asleep when the sun came up. I woke Joey up then we dragged ourselves to PT. The rest of the day was pretty routine… I was helping Joey onto the massage table at 2:00 p.m. when Dr. Jo came in to tell us that they now have enough stem cells for an IV treatment for Joey. Since he has been so patient and understanding, this will be a “bonus treatment”, hahaha. After Joey’s massage, they will come to our room and give Joey one final stem cell treatment, WOOHOO!!!! We are very excited.
more later….
March 26th, 2009
3-25-09
It’s only Wednesday, and so far, IT HAS BEEN A GREAT WEEK……
Monday was Greta’s first day back at work. She suprised us and showed up at PT to say “HI”. We hugged her and told her we missed her very much. She has requested to be our coordinator again, WOOHOO!!!! (we love Greta) Also on Monday, Joey and I went with Ali (one of the nurses) to Silk Street Pearl Market. This is a 9 story bargaining MALL!!!! There are over 1700 vendors in this market and you have to be prepared to BARGAIN (or haggle-we have both been reading up on price bargaining). We had a wonderful time and finished up all of our souvenir shopping. If you ever come to Beijing China, you have to visit the Silk Street Pearl Market Mall…..
Tuesday while Joey was busy with OT AND TCM, Greta took me to a Traditional Chinese Tea House (a girls day out). We were greeted at the entrance by a girl dressed in traditional chinese dress, taken up two enormous flights of stairs to a huge, beautiful tea room and escorted to a table by a hostess who sat with us and taught us the history of the traditional chinese tea ceremony. We tasted several different flavors of tea and were shown the correct way to drink…it was magnificent…I came away feeling very chinese, hahahaha.
Today (Wednesday) after completing his PT, OT and TCM, Joey had made plans to go out with Cindy and Mark. Cindy has been asking Joey about all of his tattoos and has decided that she wants one. She was a little nervous so Joey told her, “if you get one, I’ll will get one”, so Cindy said “Great”. Mark said he would go along as well but only to watch and to help with Joey. They left the hospital about 3:30 p.m. and returned about 7:30 p.m. Unfortunately, the appointment was only for one person, one tattoo so Cindy didn’t get one, Joey did. I must say, the guy did a great job, and Joey picked the perfect chinese tattoo. It is a ‘Chinese Phoenix’. I will send you all pictures. After returning to the room, Cindy and Mark had to go but not before Cindy said she was definitely going to make herself an appointment. Joey had a ‘Joey day’ with two very good friends that he has made here in China. He is a very happy guy today. I do believe there are several people here that we will hate saying ‘goodbye’ to.
more later….
March 25th, 2009
3-22-09
Well, we didn’t do much over the weekend. The weather turned a little cooler and looked like rain on Saturday. We did roll down to the end of the street and bought some fruit from a local vendor. We have plans to go on one last shopping trip on with one of the nurses on Monday. She is going to take us to a local bargaining market…..this should be alot of fun watching Joey bargain with the locals over prices, haha. He has been doing some reading on the subject.
Today, Joey and I started talking about what we miss the most from home (not counting our family or friends)…Joey says he misses his own bed and the freedom to go wherever he wants. As for me, I’d like a good glass of wine and some of Rick’s BBQ. We are soooo excited about going home we started packing today, haha.
This has truly been a trip to remember and it certainly wouldn’t have happened without the generosity and kindness of so many people who helped me and everyone who donated the funds to help Joey. We are so very grateful to every last one and will never forget this. God Bless.
more later…..
March 22nd, 2009
3-20-09
Last night I watched the clock anticipating what was to come after this last SCT. Joey came through like a champ. NO PAIN AT ALL!!!!! I am thrilled. I wish they all would have known this from the beginning but I guess there was no way they could have.
Joey was able to get some good rest last night so he popped right up this morning ready for PT. He stood on the standing table longer than usual. His right foot and ankle seemed a little tighter but Mark was able to loosen it up.
Thank you everybody for all your prayers, God was listening. And thank you for all the great comments, we still look forward to them daily. I’m not sure what we will do this weekend but Joey has plans to go with Dr. Jo to one of the parks. She told Joey she would go with him if he agreed to one last lumbar puncture so he is holding her to her word, hahahahah. I will probably go too.
more later……….
March 20th, 2009
3-19-09
Last night Joey and I stayed up until 3:30 a.m. He wants to be able to sleep before the pain kicks in, if any. We were told his SCT would be at 1:30 p.m. but for some reason they didn’t come to get him until 5 minutes until 3:00. The waiting made him very nervous.
I expected to see them roll him back in here within 15 minutes as before but he was gone for 35 minutes this time. Evidently, they had to keep re-positioning him. Joey said that this injection hurt but not as bad as the last one (good sign I hope)……
I have started watching the clock now because it takes approximately 2 hours for the discomfort/pain to show its ugly face. Hopefully he will be spared this time…at least for the most part. If not, I would love to see him jump up and do a cartwheel when this is all over.
It is 4:30 p.m. and he is sleeping right now so I will write more later…..
March 19th, 2009
3-18-09
Hello everybody. Today started out the same as any other, with PT, OT & TCM (traditional chinese massage)….Joey did really good today.
As you all know, we have been waiting to find out more about the last SCT and also the results of Joey’s MRI. At 4:00 p.m. Diana (our new coordinator) came to our room and said that Dr. Jo wanted to speak with me, so I left Joey in the room and followed Diana to another room where Dr. Jo and another english speaking coordinator was waiting. Dr. Jo went over Joey’s MRI and although there is really nothing to be seriously concerned about, she has come to the conclusion that the curvature of Joeys spine (scoliosis) has probably kept the stem cells from traveling as well as they are supposed to. Stem cells are very thick and very sticky….So here are the options:
1) If Joey insists on waiting for the IV SCT, there is no guarantee that it will even be done. They still have not gathered enough of this type of stem cells for an IV treatment. It could possibly take another two weeks……we fly home in two weeks.
The hospital lab has just received in a ‘higher quality’ batch of stem cells, which has to be administered via lumbar puncture….
2) If Joey will agree to one last lumbar puncture, the lab will prepare these ‘high quality’ stem cells so that they are not as thick and sticky (this is the reason for so much of Joey’s pain after each transplant). This process will also let the stem cells travel to the central nervous system the way they are supposed to….
I asked Dr. Jo which stem cell treatment she thought would have the best result for Joey’s condition, she replied that the lumbar puncture would definitely have the best results because the stem cells are transplanted directly into the spinal cord which carries them directly to the central nervous system. They will insert the needle a little bit higher than before, which will also allow the stem cells to bypass one of the major curves in his spine.
After talking for a bit more about these options, they asked me to help explain this to Joey so he would understand and hopefully not be so disappointed…..We walked back to our room and Joey knew right away there was news about the next treatment. We layed it all out on the table and left the decision up to him. Clearly he was disappointed that the IV SCT wasn’t going to be ready in time so after thinking about the pros, the cons and the possibility of feeling that same horrible pain, he chose to do the lumbar puncture and is praying that it doesn’t hurt as badly. This will be the last time either way….I am extremely proud of Joey for being so brave. He deserves the best possible outcome so EVERYBODY PLEASE SAY ONE MORE SPECIAL PRAYER FOR HIM.
The last SCT will be tomorrow at about 2:00 p.m.
March 18th, 2009
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