I realize that I am a little delayed in posting this - perhaps because there was not much to report.
Skeet's first doctor's visit was just 13 days after the implantation. Basically the neurologist stated that there were no positive changes ("yet" - my words, not his). It was noted, however, that when Skeet's blood pressure dropped upon standing, it did recover a bit more quickly than previously.
Skeeter did not seem to suffer from the muscle aches and pains that were experienced by both Steve and Eddie following their return trip home. I am not sure if this can be attributed to the fact that Skeet and family traveled very lightly. Because they were stand-by both ways, they all just took carry-on bags; therefore, no big luggage to haul around. HOWEVER, after returning home, Skeet was extremely fatigued. In the words of our sister, "The bad thing is the extreme exhaustion Skeeter feels. He just is not recovering from the trip."
I also think that Skeet may be suffering from some depression at this point in time. He seems to be angry, frustrated, impatient; almost as though he expected things to improve immediately. (He may be upset with me for posting this but I feel that I must for anyone else who is following his progress. You just never know if others may experience the same feelings and, perhaps, come to realize that it may be a normal part of the whole process.) I do know that he was very excited to read Steve's most recent post in which he was aware of some improvement - 2-1/2 months after his procedure. Along with this, I tried to encourage Skeet to remain optimistic and patient and to let the miracle stem cells have a chance to grow and do their thing.
And there is something that I have noticed that is a huge source of encouragement for me. Skeet and I have "talked" solely through e-mail and/or text messaging. Prior to the stem cell treatment, I could barely make out what he was trying to say - words were greatly misspelled and/or just a bunch of extra letters in almost every word. The last 2 or 3 messages from him have been greatly improved and I was able to read them quickly and easily. I pointed this out to him and his response was that he just took the time to take out the extra letters - I feel that he may be regaining some of his brain-to-muscle memory and am very thankful for even this minor improvement.
I, personally had a question as to whether all 6 million stem cells were actually implanted which Skeet did not know for certain. So I am going to contact the XCell Center and will report back with their response.
Monday, November 30, 2009
Tuesday, November 10, 2009
Tuesday, Nov. 10 - Six Days After Stem Cell Injection
First of all - if anyone is reading this in an effort to learn more about the stem cell treatment for themselves or loved ones and have questions that you would like to ask, please, please feel free to contact me at: frgorton@charter.net. I'm sure that I won't have your answers but will certainly do whatever I can to try to help. If not for the generosity of others sharing their story and their time, my brother may have never made to decision to pursue stem cell treatment and it would do me good to somehow "pay it forward."
Skeet, **** and **** came home last Friday as planned. I guess Skeet did experience some discomfort following the implantation but I don't believe that it was so severe that they were concerned - just a matter of figuring out how to deal with it. Here's the note I got from Peggy yesterday:
Our two final days in Germany were hectic. Skeeter had stomach problems on Wednesday evening into Thursday (remember he had the implantation on Wednesday) and Pepto-Bismo didn't help. Thursday and into Friday he had THE headache and general body aches. He really hurt when he coughed or sneezed. He used up the Ibuprofen the doctor sent with him so on Friday I gave him one Aleve. He had vague improvement so about an hour later, I gave him a second Aleve which gave him relief from the head and body aches. The aches didn't come back.
We were so fortunate to make all our flights since it was standby all the way home. I can't rave about the airline service enough! They were so accommodating! All airline personnel (except for one attendant) went out of their way to help Skeeter in any possible way. One airline attendant's comment was "You're in my house now". One pilot even allowed us to take his picture with Mary Catherine.
I am really encouraged already about Skeeter's treatment. We were up for more than 24 hours coming home and Skeeter did exceptionally well. He was tired, but it was a normal tired. Usually when he gets fatigued he experiences abnormal dizziness, his eyesight gets blurry, the shakiness gets more pronounced and his speech becomes more slurred. Those symptoms were minimal.
Skeet's next visit with his neurology doctor is November 17. I will be interested to see if he notes a difference/improvement with Skeeter. Our Dad says Skeet's speech is already better because he can hear him and understand him and you know Dad can't hear well at all. We will report to you at least once a week now. If you have any specific questions, we will try to answer them.
Love me n skeet
This is so encouraging, but the cautious part of me thinks it may be too good to be true (at least this early in the treatment) so I am reserving my own thoughts on his progress until after the doctor's visit on Nov. 17 and even a few months on down the road.
**** and Nicole again made the trip to SFO to see Skeet, Peg and **** during the layover and even they said that they noticed improvement in his speech and that was only 2 days after the treatment - is it really possible that a change can be seen that early??? A direct quote from ****(via Facebook): "It totally helped ****. I could understand every word he said when they got back. Even though he was so tired from being up almost 24hrs he had a sparkle in his eye which wasn't there before!!" And one from ****: "I totally agree with ****! It was a HUGE difference from just one week before! Glad that he is not too tired! I think all the prayers helped...so everyone keep 'em comin'!" THANK YOU, **** AND **** FOR TAKING THE TIME TO GO SEE SKEET!! For him to know how much you love him and are there for him means the world to Skeet.
And, finally a note to my sister, Peggy - I LOVE YOU!! (I don't know how to really say what I am feeling about you taking the time to keep me updated on the process/progress. And you, too, Baby Brother - get your rest, drink plenty of fluids and let those miracle stem cells do their thing.
The next update will be after Skeet's visit with the neurologist on November 17 . . .
Skeet, **** and **** came home last Friday as planned. I guess Skeet did experience some discomfort following the implantation but I don't believe that it was so severe that they were concerned - just a matter of figuring out how to deal with it. Here's the note I got from Peggy yesterday:
Our two final days in Germany were hectic. Skeeter had stomach problems on Wednesday evening into Thursday (remember he had the implantation on Wednesday) and Pepto-Bismo didn't help. Thursday and into Friday he had THE headache and general body aches. He really hurt when he coughed or sneezed. He used up the Ibuprofen the doctor sent with him so on Friday I gave him one Aleve. He had vague improvement so about an hour later, I gave him a second Aleve which gave him relief from the head and body aches. The aches didn't come back.
We were so fortunate to make all our flights since it was standby all the way home. I can't rave about the airline service enough! They were so accommodating! All airline personnel (except for one attendant) went out of their way to help Skeeter in any possible way. One airline attendant's comment was "You're in my house now". One pilot even allowed us to take his picture with Mary Catherine.
I am really encouraged already about Skeeter's treatment. We were up for more than 24 hours coming home and Skeeter did exceptionally well. He was tired, but it was a normal tired. Usually when he gets fatigued he experiences abnormal dizziness, his eyesight gets blurry, the shakiness gets more pronounced and his speech becomes more slurred. Those symptoms were minimal.
Skeet's next visit with his neurology doctor is November 17. I will be interested to see if he notes a difference/improvement with Skeeter. Our Dad says Skeet's speech is already better because he can hear him and understand him and you know Dad can't hear well at all. We will report to you at least once a week now. If you have any specific questions, we will try to answer them.
Love me n skeet
This is so encouraging, but the cautious part of me thinks it may be too good to be true (at least this early in the treatment) so I am reserving my own thoughts on his progress until after the doctor's visit on Nov. 17 and even a few months on down the road.
**** and Nicole again made the trip to SFO to see Skeet, Peg and **** during the layover and even they said that they noticed improvement in his speech and that was only 2 days after the treatment - is it really possible that a change can be seen that early??? A direct quote from ****(via Facebook): "It totally helped ****. I could understand every word he said when they got back. Even though he was so tired from being up almost 24hrs he had a sparkle in his eye which wasn't there before!!" And one from ****: "I totally agree with ****! It was a HUGE difference from just one week before! Glad that he is not too tired! I think all the prayers helped...so everyone keep 'em comin'!" THANK YOU, **** AND **** FOR TAKING THE TIME TO GO SEE SKEET!! For him to know how much you love him and are there for him means the world to Skeet.
And, finally a note to my sister, Peggy - I LOVE YOU!! (I don't know how to really say what I am feeling about you taking the time to keep me updated on the process/progress. And you, too, Baby Brother - get your rest, drink plenty of fluids and let those miracle stem cells do their thing.
The next update will be after Skeet's visit with the neurologist on November 17 . . .
Friday, November 6, 2009
November 6, 2009 - Update
My internet has been down so I am just now able to update on Skeet's stem cell treatment. Lots of updates - here they are, in order:
From Tuesday:
Tuesday: Not exactly the relaxing day I had planned. Skeeter has felt pretty good when you consider everything he has been through, and the fact that your night is our day. Takes some getting used to. He wanted to do some shopping and I wanted to find a yarn shop. Our stupid navigation system was still not talking to us so we were driving by the seat of our pants. Yes, we got lost. Saw a whole lot more of Germany than we ever thought we would or ever wanted to, at least on this trip. An hour later we made our way back to a known landmark, the train station. We parked there, bought a parking permit and walked to a McDonald's (another McRib for Skeeter) and a gift shop. Had a parking ticket when we got back. Get this - it was for parking in a handicap space with no permit. Well, since we were using a rental car, it wouldn't have a permit on it, would it? Went to the police station to give them our tale of woe. (**** told me not to speak because he didn't want to spend his remaining time in Germany in a jail) Turns out the police don't issue the parking tickets, but a very nice polizie (that's police to you un-German folk) called the Parking Enforcers and they dismissed our ticket. Brought Skeet back to the motel and he took a really good long nap.
Tomorrow is the big day. He will be injected with his own stem cells. I'm already worrying about trying to keep him down for the day. He is so determined to keep walking and doing things by himself. He almost never asks for help. He will just go without instead of asking somebody to do something for him. He pushes himself to the point of fatigue each and every day.
Will let you know how tomorrow goes.
P.S never did get to the laundromat today
From Peggy on Wednesday:
Wednesday, Nov 4. This time we drove right to the hospital. No wrong turns, we actually knew our way. Except for **** having to ask me if he was suppose to turn here. Yep, it was the turn to the street that the hospital is on.
Skeet had more than six point three million cells (out of 22 tubes from his bone marrow draw) with 97 percent vitality. The implant Dr (not Dr. John) said that was very good. He would not let us take any pictures. He said "Anywhere else in Europe, just not in this room". So Skeet held Mary Catherine the whole time. He let me be in the room with him. The process took about 15 minutes, maybe. He was emphatic that Skeeter had to lay down for three hours afterwards. No, he was not allowed a second pillow. No, he was not allowed to lift the head section of the bed. Skeeter had no patience for laying there for three hours. I told him to be glad that Sis wasn't there because she would spank his baby butt for lifting his head. It worked he laid on his side for the rest of the recovery. The Doctor came and checked on him and said tomorrow everything could be back to "usual". Told Skeeter to drink lots of liquids, didn't matter what kind water, juice, even coffee - just drink a lot.
It's been six hours and Skeet has only had one Ibuprofen. He says he actually feels better when he sits up. He says the pressure is less. When you consider all he has been through in a very short time, he is doing remarkably well.
**** has been looking into our flight back home. We will still be on stand by, but who cares? We accomplished getting here, we'll get home when we get home.
And, then this note from Thursday morning:
Last night Skeet said he wanted to add to his blog the information about handicap parking. If you display the placard from the states, you do not need to buy a parking permit. Also, you are allowed to be parked as long as you need, in other words, a time limit does not apply.
Skeeter has developed the dreaded headache. In his words, they did not give him enough Ibuprofen to make it through the night and the next day and that is just taking one when allowed. Also he feels dehydrated. So, will try to get more liquids in him. He had trouble sleeping even with his sleeping pills.
I wish he felt better. I would like to get him out of this motel room and let him see a little bit of "old" Germany which is right behind the hotel we are staying in.
That's it for now.
For anyone that might be considering the stem cell treatment and following Skeet's experience, it was important to him to let you know about the handicap parking - Be sure to take your handicap placard with you to Germany. It can be used there too.
And even though Skeet is not feeling well, it seems to be totally expected and not out of the norm. More later - still internet problems and I must log off.
From Tuesday:
Tuesday: Not exactly the relaxing day I had planned. Skeeter has felt pretty good when you consider everything he has been through, and the fact that your night is our day. Takes some getting used to. He wanted to do some shopping and I wanted to find a yarn shop. Our stupid navigation system was still not talking to us so we were driving by the seat of our pants. Yes, we got lost. Saw a whole lot more of Germany than we ever thought we would or ever wanted to, at least on this trip. An hour later we made our way back to a known landmark, the train station. We parked there, bought a parking permit and walked to a McDonald's (another McRib for Skeeter) and a gift shop. Had a parking ticket when we got back. Get this - it was for parking in a handicap space with no permit. Well, since we were using a rental car, it wouldn't have a permit on it, would it? Went to the police station to give them our tale of woe. (**** told me not to speak because he didn't want to spend his remaining time in Germany in a jail) Turns out the police don't issue the parking tickets, but a very nice polizie (that's police to you un-German folk) called the Parking Enforcers and they dismissed our ticket. Brought Skeet back to the motel and he took a really good long nap.
Tomorrow is the big day. He will be injected with his own stem cells. I'm already worrying about trying to keep him down for the day. He is so determined to keep walking and doing things by himself. He almost never asks for help. He will just go without instead of asking somebody to do something for him. He pushes himself to the point of fatigue each and every day.
Will let you know how tomorrow goes.
P.S never did get to the laundromat today
From Peggy on Wednesday:
Wednesday, Nov 4. This time we drove right to the hospital. No wrong turns, we actually knew our way. Except for **** having to ask me if he was suppose to turn here. Yep, it was the turn to the street that the hospital is on.
Skeet had more than six point three million cells (out of 22 tubes from his bone marrow draw) with 97 percent vitality. The implant Dr (not Dr. John) said that was very good. He would not let us take any pictures. He said "Anywhere else in Europe, just not in this room". So Skeet held Mary Catherine the whole time. He let me be in the room with him. The process took about 15 minutes, maybe. He was emphatic that Skeeter had to lay down for three hours afterwards. No, he was not allowed a second pillow. No, he was not allowed to lift the head section of the bed. Skeeter had no patience for laying there for three hours. I told him to be glad that Sis wasn't there because she would spank his baby butt for lifting his head. It worked he laid on his side for the rest of the recovery. The Doctor came and checked on him and said tomorrow everything could be back to "usual". Told Skeeter to drink lots of liquids, didn't matter what kind water, juice, even coffee - just drink a lot.
It's been six hours and Skeet has only had one Ibuprofen. He says he actually feels better when he sits up. He says the pressure is less. When you consider all he has been through in a very short time, he is doing remarkably well.
**** has been looking into our flight back home. We will still be on stand by, but who cares? We accomplished getting here, we'll get home when we get home.
And, then this note from Thursday morning:
Last night Skeet said he wanted to add to his blog the information about handicap parking. If you display the placard from the states, you do not need to buy a parking permit. Also, you are allowed to be parked as long as you need, in other words, a time limit does not apply.
Skeeter has developed the dreaded headache. In his words, they did not give him enough Ibuprofen to make it through the night and the next day and that is just taking one when allowed. Also he feels dehydrated. So, will try to get more liquids in him. He had trouble sleeping even with his sleeping pills.
I wish he felt better. I would like to get him out of this motel room and let him see a little bit of "old" Germany which is right behind the hotel we are staying in.
That's it for now.
For anyone that might be considering the stem cell treatment and following Skeet's experience, it was important to him to let you know about the handicap parking - Be sure to take your handicap placard with you to Germany. It can be used there too.
And even though Skeet is not feeling well, it seems to be totally expected and not out of the norm. More later - still internet problems and I must log off.
Wednesday, November 4, 2009
6 MILLION STEM CELLS!!
. . . that's gotta be good - right? I woke up this morning to a text message from Skeet, "Hey sis 6 million stem cells." This came in at 4:55 a.m. EST. I sent a note back asking if the implantation had been done and have not received a response so I'm hoping that it was and that he is resting.
Even though I felt that this was a good number, I couldn't be certain so I referred back to Steve's Blog (http://www.msajourney.blogspot.com/) and his September, Post 09, Day 4 entry. (Google couldn't help me out here). Following is a cut and paste: "The average patient’s bone marrow sample produces approximately 2 million usable stem cells." So, again, I'm feeling cautiously optimistic - have I mentioned what an emotional roller coaster this has been for all of us?
Steve - if you are reading this, I would like to say thank you again from the bottom of my heart. It is because of you that Skeet and Peggy pursued the XCell Center treatment. Sharing your story has been a huge source of information and inspiration. Continued prayers for your progress and good health.
Even though I felt that this was a good number, I couldn't be certain so I referred back to Steve's Blog (http://www.msajourney.blogspot.com/) and his September, Post 09, Day 4 entry. (Google couldn't help me out here). Following is a cut and paste: "The average patient’s bone marrow sample produces approximately 2 million usable stem cells." So, again, I'm feeling cautiously optimistic - have I mentioned what an emotional roller coaster this has been for all of us?
Steve - if you are reading this, I would like to say thank you again from the bottom of my heart. It is because of you that Skeet and Peggy pursued the XCell Center treatment. Sharing your story has been a huge source of information and inspiration. Continued prayers for your progress and good health.
Monday, November 2, 2009
November 2 - Bone Marrow Was Extracted Today
Got this update earlier today:
We ordered room service last night. Skeet and I shared a 180 g Rindfleisch garniert mit Speck, Tomaten, Gurken, Zweibelringe und frischen Gouda dazu French Frieze mit Tomaten. Translation: 180 g beef garnished with bacon, tomatoes, cucumbers, onion rings and fresh Gouda and French frieze with tomatoes - ketchup and mayonnaise. The ketchup is actually BBQ sauce and cucumbers are really pickles. We skipped the onions and cheese.
Skeeter had a rough night. I am so glad we were in the connecting room because he fell down trying to go to the bathroom in the middle of the night. He has quite a bruise today to show for it. Jim was able to get him up and back on his feet. But he was so unsteady. After he was back up, his feet just started sliding backwards. He was still hanging on to the chair and Jim was behind him so he prevented another fall. I was up after every cough or hiccup, or any sound that wasn't a snore, checking on him.
After all our driving yesterday, we made a wrong turn today. But fortunately we left the motel at 10:00 am so we arrived at the clinic at 10:30 for our 11:00 appointment. We met with Dr. John and he had the funniest way of saying there have not been any complications, until today. At first I was thinking "What? What happened today?" before I realized his meaning. Read it over again and you will see what I mean. He allowed me to go in with Skeeter to watch the collection process. Mary Catherine, of course, had to go too. (She wouldn't speak to us the rest of the day if we hadn't allowed her to go. Dr. John was very agreeable to having his picture taken with her) The best way I can describe it is to say he is so familiar with it that it almost seemed like an automated collection. The area of the collection site is best described as the back, hip, at the pelvic area. At one point Skeeter said that feels like an electric shock and Dr. John adjusted the t-handle device and the sensation was gone. I lost count of how many tubes were collected. But it was A LOT! Dr. John seemed pleased that the flow was so good. Skeeter said it wasn't bad and didn't hurt. He didn't mind the electric shock either.
He was pretty tired afterwards. No wonder, a bad night of sleep, loss of lots of bloodnstuff. So we took him to McDonald's to finally get him his happy meal. He decided on a McRib instead. Now he wants to make sure he gets another one before we leave here. Also, he really likes the chocolate bars. He says they are really creamy.
Going to find a laundromat tomorrow and wash our clothes. **** and I only have what we wore on the plane and one change of clothes. We made our luggage fit in one carry on. Better chance of getting a seat on the plane if you only have carry on luggage. Other than that, it should be a day of rest.
Will let you know tomorrow if Skeeter has any pain or problems with the area at and around the site of collection.
P. S. You know Mary Catherine is the doll that is documenting our adventures, right?
I'm trying to decipher what was meant by ". . . there have not been any complications until today . . ." The only thing I can figure is that there has been nothing happen until today. I am very glad to hear that the doctor was pleased with the flow and am contributing that to Mom's coconut concoction - she may just have to share the recipe for others that might be interested.
Hopefully, Skeet will get a good night's rest tonight and feel stronger tomorrow.
We ordered room service last night. Skeet and I shared a 180 g Rindfleisch garniert mit Speck, Tomaten, Gurken, Zweibelringe und frischen Gouda dazu French Frieze mit Tomaten. Translation: 180 g beef garnished with bacon, tomatoes, cucumbers, onion rings and fresh Gouda and French frieze with tomatoes - ketchup and mayonnaise. The ketchup is actually BBQ sauce and cucumbers are really pickles. We skipped the onions and cheese.
Skeeter had a rough night. I am so glad we were in the connecting room because he fell down trying to go to the bathroom in the middle of the night. He has quite a bruise today to show for it. Jim was able to get him up and back on his feet. But he was so unsteady. After he was back up, his feet just started sliding backwards. He was still hanging on to the chair and Jim was behind him so he prevented another fall. I was up after every cough or hiccup, or any sound that wasn't a snore, checking on him.
After all our driving yesterday, we made a wrong turn today. But fortunately we left the motel at 10:00 am so we arrived at the clinic at 10:30 for our 11:00 appointment. We met with Dr. John and he had the funniest way of saying there have not been any complications, until today. At first I was thinking "What? What happened today?" before I realized his meaning. Read it over again and you will see what I mean. He allowed me to go in with Skeeter to watch the collection process. Mary Catherine, of course, had to go too. (She wouldn't speak to us the rest of the day if we hadn't allowed her to go. Dr. John was very agreeable to having his picture taken with her) The best way I can describe it is to say he is so familiar with it that it almost seemed like an automated collection. The area of the collection site is best described as the back, hip, at the pelvic area. At one point Skeeter said that feels like an electric shock and Dr. John adjusted the t-handle device and the sensation was gone. I lost count of how many tubes were collected. But it was A LOT! Dr. John seemed pleased that the flow was so good. Skeeter said it wasn't bad and didn't hurt. He didn't mind the electric shock either.
He was pretty tired afterwards. No wonder, a bad night of sleep, loss of lots of bloodnstuff. So we took him to McDonald's to finally get him his happy meal. He decided on a McRib instead. Now he wants to make sure he gets another one before we leave here. Also, he really likes the chocolate bars. He says they are really creamy.
Going to find a laundromat tomorrow and wash our clothes. **** and I only have what we wore on the plane and one change of clothes. We made our luggage fit in one carry on. Better chance of getting a seat on the plane if you only have carry on luggage. Other than that, it should be a day of rest.
Will let you know tomorrow if Skeeter has any pain or problems with the area at and around the site of collection.
P. S. You know Mary Catherine is the doll that is documenting our adventures, right?
I'm trying to decipher what was meant by ". . . there have not been any complications until today . . ." The only thing I can figure is that there has been nothing happen until today. I am very glad to hear that the doctor was pleased with the flow and am contributing that to Mom's coconut concoction - she may just have to share the recipe for others that might be interested.
Hopefully, Skeet will get a good night's rest tonight and feel stronger tomorrow.
Sunday, November 1, 2009
November 1, 2009 - They're in Germany
Thank God for our sister, Peggy - I wouldn't have a clue what to report on. It seems as though all is going pretty well so far . . . here's the first report from Germany:
"Friday our journey begins at 8:44 am in ****, where we are on stand-by. Minus one person - ****, Skeeter's wife. She backed out at the last minute. I guess she had her reasons. We are the last to de-plane in **** and Skeeter excitedly tells us, and the flight attendant "Look at that". Laying there in the aisle is a probable .22 unspent bullet! My theory is that an air marshall has flown with us incognito.
Met up with ****, Nicole, and Brooke. Only had about 15 to 20 minutes to spend with them. Aunt Becki had seen a shooting star just that night and so she knew we would have a successful outcome.
We made our 1:55 pm connecting flight to Germany (Again on Stand-by) and the plane was full! I was really happy because I knew that was the summit. Nothing could stop us now. Except for the crying baby, Skeet had an excellent aisle seat in a last row, in the middle of the plane. Right behind him were the restrooms. Our seats were twenty rows away, so we checked on him every hour and got him up every hour. But he was all alone and didn't care for any of the three movies they showed, couldn't reach his laptop, so he couldn't watch any of his movies. He was bored out of his gourd! He said "You know how much I hate an MRI? Well I hate this even more". It was mostly a smooth flight. We arrive in Frankfurt on Saturday at eight something in the morning. We took the high speed train, paid $200 something for a round trip ticket. They had to bring a special cage device and jack it up, then ramps were laid out to get Skeet in his wheelchair on and off the train. Got in to Cologne around noon (for them and 4 am for our bodies)
Rented a car. Whatever you hear about parking - just think the worst - and you got a pretty accurate picture. Really small cars parking anywhere they can get to, no pickups. I haven't seen any fire hydrants. Maybe they are just really well hidden. Or maybe the cars are parked in front of them, keeping them hidden. Rarely will you see handicap reserve parking, but even so, vehicles are parked there and unless maybe their plate indicates handicap, they do not have the placard in a visual place. Made it to the hotel, after the stupid navigation system in the car took us in a circle back to where we started from. The hotel is fairly simple to get to from the train station, even though it is about two miles away. Skeeter was really feeling weary, dizzy, dehydrated, nauseated by the time we got to our rooms. At first, we were given connecting rooms but his was not handicap equipped. By the time we checked him into the handicap room, there was no longer a room available for us on the same floor. So, Jim came and checked on Skeeter and he was in the bathroom all by himself! Using only a desk chair to slide across the floor. All of us wonder what Germany thinks handicap means? Skeeter was really missing **** and wished she was here..
Sunday in Germany Trick or Treat:
What a breakfast this place puts out! I tried to eat a lot because we had to pre-pay for **** and I was trying to get our money's worth. We weren't allowed to take any plates back to our room, so we stuffed our pockets. The hotel allowed us to change our room and we took the room that connects with Skeeter's. Skeeter took a shower after coming back to our rooms. Handicap friendly - NOT. You have to step into a high bathtub and sit in it and use the hand held shower head. He was in there for a fairly long time. He said ten minutes of that was trying to get out of the bathtub. I told him he could have called to me I was waiting right outside his door. I think I need to remind him that I have seen his baby butt before when changing his baby butt diaper.
**** and I try to get Skeeter to go with us to find the Hospital/Clinic by telling him we will stop at a McDonalds and get him a happy meal. He won't do it. Well, turns out that is a good thing. It took us all day. It was night before the stupid navigation system finally spoke up and said "You have reached your destination". Well yeah, after we made our way back to the hotel and they printed out Google map showing us how to get there. (And changed the navigation to speak english instead of german). I finally found a sign with a red cross on it so I told **** to follow that one. He thought it would just take us to a red cross building but I felt it was universal for Emergency . Depending on traffic, it will take us no longer than ten minutes to get there tomorrow morning. Boy let a bunch of Yahoo's loose in Germany and what have you got? Lost tourists that can't speak or read the language.
Skeeter isn't sleeping well and I'm concerned that he won't be in the best condition to receive his treatments.
Bye for now - more tomorrow"
And, here are my thoughts . . . That "air marshall" was really an angel sent to make sure they all had a safe flight and **** is really Skeet's lucky charm.
Just want to add that I hope to visit the family in April or May and I have every intention of taking Skeet to the supermarket so that he can walk and cluck like a chicken and embarass the poo out of me!
"Friday our journey begins at 8:44 am in ****, where we are on stand-by. Minus one person - ****, Skeeter's wife. She backed out at the last minute. I guess she had her reasons. We are the last to de-plane in **** and Skeeter excitedly tells us, and the flight attendant "Look at that". Laying there in the aisle is a probable .22 unspent bullet! My theory is that an air marshall has flown with us incognito.
Met up with ****, Nicole, and Brooke. Only had about 15 to 20 minutes to spend with them. Aunt Becki had seen a shooting star just that night and so she knew we would have a successful outcome.
We made our 1:55 pm connecting flight to Germany (Again on Stand-by) and the plane was full! I was really happy because I knew that was the summit. Nothing could stop us now. Except for the crying baby, Skeet had an excellent aisle seat in a last row, in the middle of the plane. Right behind him were the restrooms. Our seats were twenty rows away, so we checked on him every hour and got him up every hour. But he was all alone and didn't care for any of the three movies they showed, couldn't reach his laptop, so he couldn't watch any of his movies. He was bored out of his gourd! He said "You know how much I hate an MRI? Well I hate this even more". It was mostly a smooth flight. We arrive in Frankfurt on Saturday at eight something in the morning. We took the high speed train, paid $200 something for a round trip ticket. They had to bring a special cage device and jack it up, then ramps were laid out to get Skeet in his wheelchair on and off the train. Got in to Cologne around noon (for them and 4 am for our bodies)
Rented a car. Whatever you hear about parking - just think the worst - and you got a pretty accurate picture. Really small cars parking anywhere they can get to, no pickups. I haven't seen any fire hydrants. Maybe they are just really well hidden. Or maybe the cars are parked in front of them, keeping them hidden. Rarely will you see handicap reserve parking, but even so, vehicles are parked there and unless maybe their plate indicates handicap, they do not have the placard in a visual place. Made it to the hotel, after the stupid navigation system in the car took us in a circle back to where we started from. The hotel is fairly simple to get to from the train station, even though it is about two miles away. Skeeter was really feeling weary, dizzy, dehydrated, nauseated by the time we got to our rooms. At first, we were given connecting rooms but his was not handicap equipped. By the time we checked him into the handicap room, there was no longer a room available for us on the same floor. So, Jim came and checked on Skeeter and he was in the bathroom all by himself! Using only a desk chair to slide across the floor. All of us wonder what Germany thinks handicap means? Skeeter was really missing **** and wished she was here..
Sunday in Germany Trick or Treat:
What a breakfast this place puts out! I tried to eat a lot because we had to pre-pay for **** and I was trying to get our money's worth. We weren't allowed to take any plates back to our room, so we stuffed our pockets. The hotel allowed us to change our room and we took the room that connects with Skeeter's. Skeeter took a shower after coming back to our rooms. Handicap friendly - NOT. You have to step into a high bathtub and sit in it and use the hand held shower head. He was in there for a fairly long time. He said ten minutes of that was trying to get out of the bathtub. I told him he could have called to me I was waiting right outside his door. I think I need to remind him that I have seen his baby butt before when changing his baby butt diaper.
**** and I try to get Skeeter to go with us to find the Hospital/Clinic by telling him we will stop at a McDonalds and get him a happy meal. He won't do it. Well, turns out that is a good thing. It took us all day. It was night before the stupid navigation system finally spoke up and said "You have reached your destination". Well yeah, after we made our way back to the hotel and they printed out Google map showing us how to get there. (And changed the navigation to speak english instead of german). I finally found a sign with a red cross on it so I told **** to follow that one. He thought it would just take us to a red cross building but I felt it was universal for Emergency . Depending on traffic, it will take us no longer than ten minutes to get there tomorrow morning. Boy let a bunch of Yahoo's loose in Germany and what have you got? Lost tourists that can't speak or read the language.
Skeeter isn't sleeping well and I'm concerned that he won't be in the best condition to receive his treatments.
Bye for now - more tomorrow"
And, here are my thoughts . . . That "air marshall" was really an angel sent to make sure they all had a safe flight and **** is really Skeet's lucky charm.
Just want to add that I hope to visit the family in April or May and I have every intention of taking Skeet to the supermarket so that he can walk and cluck like a chicken and embarass the poo out of me!
Friday, October 30, 2009
October 30, 2009 - They are On Their Way
As I type this, Skeeter, ****, Peggy and *** should be on a plane headed to ****. The plan was to get on a flight out of Medford **** at 6:00 a.m. PST. They will then connect to a flight directly to Cologne, Germany. I say "should be" because they are traveling via stand-by flights all the way. I did send a text message to Skeet's cell phone at 9:47 EST and he has not yet answered (it's now 10:29 am EST). So he's either ignoring me or can't answer because he's in the air - I'm hoping for the latter.
Well - just got a text from Skeet - guess he was ignoring me :-). The flight is scheduled to leave **** at 9:00 am PST. Hopefully they will keep me updated so that I can keep you updated.
Well - just got a text from Skeet - guess he was ignoring me :-). The flight is scheduled to leave **** at 9:00 am PST. Hopefully they will keep me updated so that I can keep you updated.
Sunday, October 18, 2009
October 18 - Payment Has Been Made
No Backing Out Now - here's another update from our sister, Peggy:
Payment has been made to Xcell Center. The bank suggested a wire transfer (duh - didn't even think of that). The cost is only $40.00, compared to $130 to convert American cash and make a cash payment in German currency, 3% fee to pay by Visa or Mastercard, or 5% fee to pay by American Express. Over a hundred dollar savings. YAY!! Sandy received her passport. Skeeter still thinks she will back out. I am sure she won't. Mom has been feeding some coconut paste concoction to Skeet. Looks gross and Skeet says it is gross. Caused him some intestinal distress (in my opinion) but both mom and dad think his speech is improved. I don't believe the concoction has made a difference, because I noticed his strength and outlook was improved in the last two weeks. And that was even during and after getting his flu shot. The doctor said yes to getting a flu shot and stressed that Skeet's disease does not compromise his immunity. Skeet's doctor seems excited about the treatment and wants to cooperate with Germany and be active in the recovery. Gonna go now Love peg
In case anyone is interested, here is a link to the treatment center in Germany: http://www.xcell-center.com/ . It really is fascinating and the case studies are so encouraging. Perhaps someday Skeet's testimonial will be there also.
And, now I'm off to read about this "coconut concoction". I've asked them to follow the diet regimen that Fran started for Steve prior to his treatment (you can read about his journey by following the link in yesterday's post), but what does the big sister know??!?? Especially one that lives 3,000 miles away.
Will try to keep you updated . . .
Payment has been made to Xcell Center. The bank suggested a wire transfer (duh - didn't even think of that). The cost is only $40.00, compared to $130 to convert American cash and make a cash payment in German currency, 3% fee to pay by Visa or Mastercard, or 5% fee to pay by American Express. Over a hundred dollar savings. YAY!! Sandy received her passport. Skeeter still thinks she will back out. I am sure she won't. Mom has been feeding some coconut paste concoction to Skeet. Looks gross and Skeet says it is gross. Caused him some intestinal distress (in my opinion) but both mom and dad think his speech is improved. I don't believe the concoction has made a difference, because I noticed his strength and outlook was improved in the last two weeks. And that was even during and after getting his flu shot. The doctor said yes to getting a flu shot and stressed that Skeet's disease does not compromise his immunity. Skeet's doctor seems excited about the treatment and wants to cooperate with Germany and be active in the recovery. Gonna go now Love peg
In case anyone is interested, here is a link to the treatment center in Germany: http://www.xcell-center.com/ . It really is fascinating and the case studies are so encouraging. Perhaps someday Skeet's testimonial will be there also.
And, now I'm off to read about this "coconut concoction". I've asked them to follow the diet regimen that Fran started for Steve prior to his treatment (you can read about his journey by following the link in yesterday's post), but what does the big sister know??!?? Especially one that lives 3,000 miles away.
Will try to keep you updated . . .
Saturday, October 17, 2009
October 17, 2009
Skeet is going to Germany! I'm excited for him, scared for him and very, very proud of him. Here is an e-mail that I received recently:
"Hi Sis. Wanted to fill you in on our plans. On October 30 we will fly from **** to ****. Catch a flight on United (UA** if you care, you can follow the flight partway on the internet) straight to Frankfurt Germany. On Nov 2 the clinic will take out bone marrow from the hip area. On Nov 4, they will re-inject me with my own cultivated stem cells. I don't look forward to that at all. We fly home on Nov 6 and get this, we leave Germany at 1400 and arrive in **** at 1600. Pretty quick trip home huh?
Still waiting for ***'s passport, but she applied for it September 13 so it should be here this week or next.
We are going to take the high speed train from Frankfurt to Cologne. Really looking forward to that. It will take us approximately 140 miles in about half an hour.
Saw your comment on Steve's blog.
Love from Skeet and Peg"
So, yes, thanks to the very many generous donations and prayers for my baby brother, he will be getting a stem cell treatment to try to alleviate the symptoms caused by the MSA-C. Please continue to pray for his recovery.
Above is a picture that I took almost one year ago before we knew what was causing Skeet's imbalance and slurred speech. I'm sure that the words on the wall were prophetic and hopeful that they will aid in the outcome.
As a family, we have been following Steve's journey, which helped to make the decision to travel to Germany for the stem cell treatment. Please read about Steve here: http://www.msajourney.blogspot.com/ to learn a little more about the disease and the treatment.
I hope to be able to document Skeet's journey here for all of you that would like to follow his progress.
Again, "thank you" just does not seem adequate to express how much we appreciate the donations made for Skeeter's treatment; please know that a day does not go by that one of us/all of us is not saying thank you from the bottom of our hearts.
Sunday, September 20, 2009
How Do You Say Good-Bye to Your Baby Brother
. . . I'm praying that I don't have to.
My brother, Skeet, has been diagnosed with MSA-C. One year ago he walked with a wide stance and had some minor slurring of speech. Today he is in a wheelchair and can barely take care of himself. His diagnosis is death, which is almost a certainty within 2 to 3 years. Skeet is only 47 years old . . . how do you say good-bye to your baby brother?
Our sister, Peggy, has been diligent in trying to find a treatment which will ease the devastating symptoms of this disease and keep him with us for a few more years. They have learned that there is a research center in Germany that will do the stem cell treatment, giving him a chance to regain some of his motor skills and, hopefully, allow him to drive again. The cost of the treatment alone is approximately $10,000, which does not include airfare, hotel, and food expenses. My family simply does not have this amount of money. We are trying desperately to raise the money to pay for the trip and travel expenses. If anyone out there can help, please contribute whatever you can - even $1.00 will help tremendously. Please, any contributions to:
And, in case you think that this is just a request for money, which it quite blatantly is, I am also going to try to document my brother's journey (with the help of my sister). I hope to be able to learn more about this disease and to share with you his progress. If anyone has any first-hand knowledge of MSA-C, please share what you know with us.
My brother, Skeet, has been diagnosed with MSA-C. One year ago he walked with a wide stance and had some minor slurring of speech. Today he is in a wheelchair and can barely take care of himself. His diagnosis is death, which is almost a certainty within 2 to 3 years. Skeet is only 47 years old . . . how do you say good-bye to your baby brother?
Our sister, Peggy, has been diligent in trying to find a treatment which will ease the devastating symptoms of this disease and keep him with us for a few more years. They have learned that there is a research center in Germany that will do the stem cell treatment, giving him a chance to regain some of his motor skills and, hopefully, allow him to drive again. The cost of the treatment alone is approximately $10,000, which does not include airfare, hotel, and food expenses. My family simply does not have this amount of money. We are trying desperately to raise the money to pay for the trip and travel expenses. If anyone out there can help, please contribute whatever you can - even $1.00 will help tremendously. Please, any contributions to:
And, in case you think that this is just a request for money, which it quite blatantly is, I am also going to try to document my brother's journey (with the help of my sister). I hope to be able to learn more about this disease and to share with you his progress. If anyone has any first-hand knowledge of MSA-C, please share what you know with us.
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