We're Back!!!!

We're back in the states! Beanie is home with her hubbie and Dave and i are staying at the Highland Beach Home in Florida. It is so beautiful here and about 300 yards from the ocean! We will be coming back to Va Bch tomorrow as we are anxious to get back home. We already miss the wonderful staff at Eden Clinic but have been told we can call the doctor anytime day or night. It is like we belong to an exclusive club! Words could never explain how incredibly wonderful the staff was. We have lots of eail addresses of all the patient's families so I will be staying in touch with them. Hopefully we will see them again when we return. We will probably all be returning at different times. but it would surely be nice to all return together. Dave became close to his roommate Jerry and Bean and i became close with two of the gals- one whose bhusband has a very rare terminal disease and the other one is a model and actress whose mother has Parkinson's. She isn't a well known actress but she had a travel show on the entertainment Channel. We really enjoyed spending time with her and she invited us to LA. You wanted details so hopefully I have given you some! Dave has to be very careful to stay healthy so if you come to visit- I will probably make you wear a mask! But don't let that stop you. We want to see our family and friends!!! Love Cindy
Please continue to keep Dave in your prayers. It is such a wonderful feeling to know that you are all praying for him. He feels surrounded by your love and it is very comforting! We love you all!!!! I will ask my sister to do a slideshow and also post more pictures!

Day 15 departure day

We are all packed up and ready to get in the van. It sure was quiet around here yesterday. cindy and I stayed in Dave's room last night to keep him company. The beds are very comfortable. We are going in to get breakfast and will be leaving here in about an hour. this is the last posting form Belize. Dave needs your continued prayers and support...we need to pray that the stem cells arrest the progression of the disease and that Dave can get stronger....keep those prayers coming.

evening Day 14 Eden

Well the countdown to home coming is on. The doctors explained to us that Dave’s stem cells are like a fetus growing inside of him and maturing. It will take time for them to grow and develop and become the new neuronal stem cells that he so needs; we cannot be impatient for results. The neuronal stem cells are the most highly specialized of all stem cells and take months to function properly. He is in the process of being healed, but there is a lot of work to do, a lot of damage to reverse. He will get at least two boosters this year that will be needed to work with the platform that has been laid now. There will be a major change in what he can eat and use…..all organic foods, no gluten, no sugar, no preservatives, no red meat (except buffalo occasionally)….all organic toiletries, and household cleaners. He will need blood work monthly to monitor results. He will be in rehab to start to rebuild muscles that have died (we need to pray that the fasciculations stop first) and to improve lung function. Good thing he has Cindy to watch out for him, huh????

Day 14 Eden

The internet has been in and out all day, every time I went to publish to the blog, I would lose the connection. Today most are packing up and getting discharged for tomorrow departure. We are departing the next day (Fri). Dave seems in good spirits and was receiving a large IV of vitamins called Super Immune. He can go out as much as he wants today after the sun goes down, and I think he is anxiously awaiting a tour of the clinic property. The families will meet tonight for a talk with Dr. B about nutrition, diet and lifestyle changes. We are also hoping for a tour of the research lab.
The girls (Cindy, Miriam, Cindyloo and I), went into “town” for lunch to the Casablanca (a former brothel). It was great….Cindyloo and I had (you guessed it) conche seviche and curried shrimp…yuum. It was a hot walk in both directions but the first time we have ventured off the property for lunch. We shouldn’t have left it for the next to last day, I guess. My camera battery died on me and the spare was out of juice, too, so no new pics today.

roommate Jerry

Jerry shows off his new hairdo while getting his transplant

you asked for photos, so here they are

Keep those cards and letters coming

Dave gets an ultrasound of the pituitary, liver and heart from Dr. Nancy and Nurse Simone

Dave talks to folks at home via Yahoo Messenger

Day 12 Eden

Day 12 Eden

Dave is actually going to receive another transplant by IV today which is wonderful news…….he will be ahead of the game with this one. He started his treatments so early that there was time for another….everyone else will be getting their fourth today, when he gets his 5th. I am staying back at the hotel again today even though I feel much better…I want to be sure that I didn’t have the flu instead of food poisoning. Pretty sure it was the mayo at lunch time…no one else ate it but me. I am sending Cindy with the camera to take photos even though it will be the same as usual. Being here at Eden and being watched over so wonderfully you feel like you are being healed.

Day 11 after lunch

Dave is looking good- good color in his face. This place is fabulous if you know anyone who could use this treatment- good for cancer- neurological diseases. Not that I wish ill on anyone.
When I said Dave will be quaretined- I meant that he shouldn't go to public places but we can have family over or go to visit family. He should probably wear a mask. We can't wait to see everyone! Thank you all for your comments. Dave loves hearing from everyone.

Day 11

Dave is now receiving his massage. The first one of the day. Dave went outside for 5 minutes yesterday with a mask on. It was uplifting for him. When we get home - he will pretty much be quarentined for a month- no public places. He has to wear a mask on the plane going home. We were going to stay in Florida for a few days but we may just stay overnight because he can't be out in the sun. We will see. Will post later. Bean has food poisoning. I am fine. Cindy

A hug from Dr Vanessa after transplant number three

Day 10 Eden

The attached photo is of Dave’s stem cells; the red vials are the neuronal and the black are the immune system.

Today is Dave’s fourth and last stem cell transplant (this go around). Joe left at 11:00 for a 2:00 flight out of Belize City. Dave’s prep work was already started, so he got to be with him for that. The transplant was the same as the previous ones. He receives mannitol to open the blood brain barrier first; the stem cells are warmed and transferred to a Saline IV bag; Dave’s vitals are monitored the entire time and he is on Oxygen; when the IV bag is empty they inject a bit more Saline to make sure that no stem cells are still in the bag; Dave receives the mannitol again until it is finished. Today the transplant was neuronal (neurological) stem cells for the nervous system and hemapoetic (I think that is how it is spelled) which are the stem cells for the blood and the immune system. The transplant should be 5 vials of each, they gave Dave 10 vials of the hemapoetic as an extra boost to his system (we will try to find out what Dr. Mitchell’s idea behind that was and let you know). We are pleased to know that they pay such individual attention to each case, and David is being treated so specially and so well. Dave was meditating and visualizing the stem cells going to the right targets as he was receiving them. He was surrounded by his healing shawl and teddy bears.

Last night Dr. Mitchell invited Jake and John (Jerry’s sons), Joe, Cindy and me in to meet Denise who is here for another booster. She was first transplanted 9 months ago. She has the same form of ALS as Dave (the Limb onset which manifests in the limbs). She has had the disease for almost 3 years and uses a scooter to get around. The good news is that the disease has not progressed in 9 months; she can breathe easier and has better movement of her arms and hands; her fasciculations have stopped. She is here with her husband and they are very pleased with her lack of regression and her small improvements as they saw her deteriorate for two years previously. She is living with the disease and not getting worse. Dr. Mitchell says she is very strict about her diet and does rehab 3 times a week. We hope that she might be able to meet with Dave and Jerry before we leave. This is what we are hoping for Dave: that the disease flat lines and gets no worse. Anything better than that is icing on the cake and God’s will for David.

Love to you all; Beannie and Cindy, and Dave

Day 9 Eden

We are heading over to the clinic….the families have been waiting for the van to pick us up, it is 11:30 our time. It is hot, hot, hot and muggy this morning and the breeze calms down about 10:30 until the evening. Dave got another roommate moved into his room last night…..Will has Hepatitis C. So there is lively conversation going on with Dave, Jerry and Will….a lot of testosterone in that room. The photos I just posted are of the family members leaving the clinic last night along with Dr. Mitchell in the middle and Dr. Vanessa on the left. We then had dinner last night together along with Dr. Blyweiss and Bill and Noke who are the clinic administrators.

Day 8 Eden

Today is a day off for Dave, yet the clinic is in full gear with 7 bone marrow transplants. Dave is sitting up in a straight back chair wearing his running shirt and shorts, and we see that he is getting stronger and more able to sit up for longer times......he is getting worked out on a regular basis and does get tired from the work out, yet he is glad that he can exercise. He has a very positive attitude about his future...he is ready for rehab, nutrition and a new diet when he gets home. Dave sends his love to all. the next transplant will be on Sunday or Monday. Keep your emails and blogs coming, they are the highlight of his day.

Cindy and I might be getting addicted to Conch seviche...we have had it for every dinner since we've been here, except last night.....no conch available, oh no. So we got it for lunch today. It is absolutely great here.

Day 7 late evening

to answer additional questions. we will be here until the 27th. D, C and B return to Forida. D&C fly back on the 30th. there will be one more stem cell treatment this go round. it will also be an IV transplant. Probably done on Sunday or Monday. tomorrow the other 7 patients get their bone marrow transplant, so it is a long day for family, patients and doctors. There will not be much going on for David except the usual, exercise, 2 massages/day, eat and go to the bathroom. he will be confined to his room until later next week. He gets 20-25 million cells with each transplant...this is the same for everyone, but depending on whether it is neurological or cancer, the stem cells would be differentiated differently. I believe everyone starts out with the immune system cells for the scaffolding mechanism to get started. They then build on this with the differentiated cells. The only reason Dave got started so much earlier than the others is due to his blood work indicating that the progression of the disease was at it's highest.....his blood work indicated advanced cell death (= muscle death) and high inflamation. They wanted to get the stem cells into him at a prime time for the body to recognize where they needed to go, as well as they did not need to suppress his system near as much as the other patients. Today was day one for everyone else. we hope to be able to ask a lot of questions that we have when we tour the research lab next week.

Good night and love to all: Bean, Cindy and Joe and of course Dave

stem cells are injected into abdomen

Moving stem cells into IV bag; test on his shoulder for reaction

Dr. Nancy takes stem cells out of liquid Nitrogen; Dave's neurological stem cells after being thawed

Day 7 post transplant

This is my first blog so bear with me. I got to the clinic early this morning so I could see my dad. He said he had a good night sleep and he was in a better mood than yesterday. Jeanie and Cindy arrived at about 10:00 this morning. The doctors informed us that his third stem cell treatment was going to be in about an hour so we all got very excited. While we waited in his room for the treatment, Doctor Nancy prepped the stem cells for injection. First she removed them from the liquid nitrogen container and put them into a cup of warm water so they would thaw out. While Dr. Nancy prepped the stem cells, Simone prepped both my dad and his roommate Jerry. They both received mannitol. This drug is given to break down the blood brain barrier so the stem cells will be able to penetrate the brain and take root. Before the stem cells were given, Dr Nancy gave Simone a small dose of the stem cells (which are all neurological stem cells) to inject into his arm to determine whether he is allergic to them. He did present with a small bump that Simone circled with a pen. I grew nervous as I noticed the nurses pointing and looking at it, but Jeanie assured me that it was fine as long as it didn’t get red and spread out further, which it did not. After that, Dr. Nancy proceeded to fill the IV bag of Saline with the stem cells which are transported along with DMSO so the stem cells will pass through the body easier. Once he was ready to receive the stem cells they stopped the mannitol drip and started the stem cell drip. The stem cell drip included about 20 to 25 million cells and although that seems like a lot, he sucked it up pretty fast. Maybe he was eager to get stem cells working for him. The nurse did fill the bag back up with a little Saline and pushed it around the bag to gather any remaining stem cells. Simone also injected an additional vial of stem cells into his abdomen (see hairy chest photo). After the stem cell therapy was finished, Simone turned the mannitol drip back on so the stem cells would have a clear path to his brain. Dr. Ghen visited with each patient asked a few questions, answered a few more questions and explained what these stem cells were. Then he moved on to the next patient room. While this entire process is going on, he had been breathing pure oxygen from a tank. I am not sure why they give oxygen but they give it 2 hours before the treatment and 2 hours after (I think this might increase blood flow through out the body). After the treatment was complete, they fed him lunch and we left the room to give him some privacy and also to go eat as well. That is where we are right now. Jeanie has her head on the table (I think she is tired from all the tequila shots), I am typing and Cindy is swimming in the pool. Anyways everyone here is very nice. Dr Blyweiss said in an email, every patient is their most important patient, and I have seen first hand that is the truth. He is in good hands and we will update again later.

Love Everyone
Joe, Cindy, Beanie

Day 7 Eden

Dave is watching a DVD that Joe brought from the states yesterday. He just had a massage, and they are giving him an IV to prepare him for the stem cell transplant in about an hour (2:00 EST). we will update you shortly.

Joe got here about 7:30EST yesterday and saw Dave for about an hour...I am sure Dave was ready for some new company and news from home.....he really cheered up seeing Joe. Joe got a tour around Belize city with Reynaldo (the van driver) and Dr. Blyweiss (they had to wait for another family member to arrive on a later flight). Joe asked lots of questions and is now the resident expert on the clinic. We hope to get a tour of the research lab when Dave is up and around next week....Dave is really looking forward to that. Joe said he will post later with his take on things.
Cindy, Bean and Joe

Dave sits up in straight back chair; nurse Ellie and Sobeidy;Drs. Ghen and staff checking out blog

after lunch Day 6

Today was a day off from stem cell transplants. He will be getting an IV transplant tomorrow, and these will be neurological stem cells. Monday was all immune system and yesterday was mostly immune with some neurological. Please feel free to email Dave with news of what is going on at home, if you ar not comfortable blogging news....he would especiallly like to hear from his grand children about what they are doing. He really misses those grand kids!!!!!!! there is not alot to do when you are confined to a room, even with the great view.

Day 6 in Eden

Cloo and I just got to the clinic at almost 2 EST. Dave is up and in the shower, so standby for a blog on how he did last night. We are expecting joe to arrive at the clinic in about 2 hours.

post transplant yesterday he was feeling pretty darn chipper......walked much more than usual and sat up in a straight back chair for 15 mins or so at a time. He is feeling very positive about this whole experience and is picturing his healthy life post transplants. There is nothing bad we can say about this place........well, OK, there isn't enough room for more than 10 patients at a time...with Dave and Jerry as the next wave of alumnae spreading the good news it will be a very busy place.
Love BCD

Exercise to move stem cells around

stem cell bone marrow transplant

transplant success

Tuesday, Day 5

What an exciting day. The web had been out so we couldn’t let you know earlier what has gone on. They started prepping Dave at about 1:00 EST. A wonderful friend of Dr Nancy and Mitchell Ghen came in to pray the 118 psalm with us in Hebrew. Dave and Cindy had been reciting verse 17, “I will live and not die and declare the works of the Lord”…..we had shared this with Ayddie who is from Israel. He said he had the book of Psalms with him and would we like to hear it in Hebrew……..wow. So he came in and talked with us and shared his wisdom…he is a very spiritual man who has learned a lot of lessons from the Kabala and through his journey. He spoke with Dave about letting go and taking care of himself right now and embracing serenity, joy and love (obviously I have condensed his wisdom into a few catch phrases). Then we prayed the psalm and Ayddie spoke first in Hebrew than translated into English….such very powerful words ending with this is the Day the lord has made, we will rejoice and be glad. They moved Dave over to the clinic operating room and we were able to accompany him inside. Dr. Nancy exlained what would happen: stem cells were prepared the same way as before, they cut away a small area of skin at the hip bone and some of Dave’s bone marrow is extracted (this is for diagnostic purposes and to compare it to his bone marrow again at his next booster visit), the stem cells are then transplanted to his bone marrow, he is stitched back up and all is done. Pretty simple stuff. Dave had nitrous oxide to calm him down and other IV drugs to help him not feel anything (he said later that he heard everything and only felt a small stick).

As they were prepping Dave they let us in the room to pray and be with him. They asked what kind of music he wanted to hear and then put on an upbeat Christian rock song….praise God!!!! Cindy and I were in tears of course, it was very moving and hard not to believe that God wasn’t right there in the room with all of us. Dave was in great hands for sure. Dr. Mitchell came in to pray and do the transplant and we left. Just a few minutes later he was out telling us that Dave was getting stitched up by Dr. Vanessa and that Dave was the easiest patient he had ever had….he has great bones and bone marrow. Dr. Vanessa apparently told Dave she was stitching “Dr. V was here”!!!!! Dave said that was fine with him.

He was wheeled back to his room and walked into bed on his own….told Jerry that it was a piece of cake, that he didn’t feel a thing. We will let you know how he is feeling later and get some photos on the blog if possible.

Thanks for everyone’s love and support, it is uplifting David to hear from you all.

DCB

view from Dave's window

victory celebration with Jerry and nurses

4 hours post transplant

I will send photos later of Dave’s first get up and walk to the window since transplant. Roommate Jerry was cheering him on. He lifted his hands above his head and cheered. He doesn’t want to be too overly optimistic, but Cindy and I can already see a difference in his energy level. He was getting exhausted just walking to the toilet before. Tomorrow will be the exciting day….transplant of the neurological stem cells directly to the bone marrow. These will get the muscles refiring and rebuilding. Should be around the same time……1-2 EST on Tuesday.

Love DCB

transplant happenings

Transplant successful.

This is so exciting……..the first transplant is completed. 25 million baby stem cells are heading towards Dave’s immune system and blood. These are the scaffolding basically for the neurological stem cells that will be transplanted later. Dr. Nancy explained everything to us as she prepared the frozen stem cells into a saline solution for IV transplant…it was like watching a Discovery Channel special. The vials of stem cells are warmed in luke warm water first, then transferred by a large needle into a IV bag of saline. The cells are in a carrier solutuin of DMSO. Some of the cells are injected very superficially on his shoulder to test for an allergic reaction first. When they are good to go , Dr. Mitchell started praying with Dave. the transplant started and Dave’s BP, temp and Oxygen levels were being monitored continually. The actuall IV took about 15-20 mins only. Dave was wishing he had a video monitor of all the stem cells rushing throughout the body….maybe in the future. The whole procedure felt like a meditation instead of a medical procedure. Dave is so excited and happy, and so very very positive. He feels like a medical pioneer and knows that he was led to this place by God…..so many things have just fallen into place so well.

Love from DCB

get ready to pray with us

transplant to start at 2:45 EST yeahhhhhhhhhh

Nurse Jesus gives massage to a sore neck

Dr. David Blyweiss and Cindy loo

nurse Simone takes more blood prior to transplant

it'll be soon now, folks

Dave is getting prepped for the transplant now…….we should be getting going in about an hour to two from now, so hang in there everyone. (2;30-3:30 EST) Today is by IV and tomorrow is bone marrow transplant in the hip area. He will be sedated for that procedure. Wed is another IV transplant than a few days off
Love from all of us D,C,B

Dave taking Bio Age test by computer

Well tomorrow is the day everyone to get your prayers going for the first stem cell transplant. This will be an IV transplant of 25 million stem cells…..Dave wants us to pray that every single one of them goes right to work on his hands and arms and stomach muscles-all his muscles that have atrophied! He has had a lot of weakness in his arms and hands and is having difficulty using his hands to complete tasks. The transplant will be happening around 12-1 EST, 10-11 Belizean time. The doctor will be praying with Dave during the procedure. He likes to do this with his patients who are receptive to prayer.Dave talked to one of the nurses today who was a diabetic with neuropathy. She had the treatment 3 weeks ago and is like a new person- no more diabetes and lots of energy- neuropathy gone. She was so excited about the results and was very encouraging. There is someone here with ALS who is here for his booster. He was treated 3 months ago and can walk now and his speech is much more audible.All in all- Dave will be having about 850-100 million new stem cells.Keep on Blogging- Dave enjoys hearing from everyone!.Cindy

Removed

Day 3 Eden

news from Cindy, Dave and Bean: Dave had many IV therapies yesterday with mostly vitamins, nutrients etc. They exercised him last night and tired him out. this morning they started the immuno- suppression therapy. we were able to get to the clinic early this morning, so we suprised Dave with an early morning visit....we will spend the day here hanging out with him and the dining area and pool when he needs his time alone. We spent Sat evening with Two patients relatives,; John is Dave's roomate Jerry's son and Cindy's mother is here from Paraquay.......we spent the evening discussing the frustrations of the lack of medical treatments for this disease. All three of our loved ones has ALS but all are displaying different symptoms and all started within a month of each other. Cindy is happy to see that they are giving Dave green drinks, colloidal silver and other supplements that she had started Dave on.....she has felt like a mad scientist trying to figure out what is helping or not. Please keep all the patients here in your prayers as well....Jerry and Vic and Nymphia.

We figured out how to call home via yahoo messenger for 1 cent/min.....good deal. So if you get a call from a 777-777-7777 number it is us!!!!! I will try to post some photos if I can figure out how to download and upload.

Day 2 in Eden

We're here with Dave. He has an I.V. of nutrients in his arm. Has a cheshire grin on his face with all the attention from the pretty nurses.

Bean and I met some nice family of patients being treated for ALS. One is a young single girl from Paraguay named Cindy whose mother is being treated for ALS. Please keep Dave's roommate Jerry and his family in your prayers. Jerry's ALS has affected his speech. We know that at least 4 out of 8 patients here are ALS patients.

The ratio is 70 staff to 8 patients so he is definitely getting good care. There is at least 1 nurse in his room at all times. When we say room we mean more like a resort room with a beautiful view of the Carribean Sea. The clinic is renting the resort space- the Don Quixote Resort in Consejo, Belize.

Beanie figured out how to call from computer to phone using Yahoo Messenger. Dave has called his family for about 1 cent a minute. Pretty Cool! Tami- we will call tomorrow between 4 and 7. Your dad missed you but left a message.
Keep on blogging!! And praying! Love Cindy, Dave, and Beanie

Eden Day 2 from Cindy

We are having breakfast at our resort and will see Dave this afternoon. Just wanted to tell all who are posting to post to Dave's most recent blog( not the inaugural blog) , so Dave doesn't have to ck all the blogs. Thanks- he is REALLY feeling all your love and support. BTW we are 2 hours behind. Blessings- Cindy

Cindy's Update From Belize

We arrived safely in Belize and were met by Jerry from Eden who drove us 2 hours over potholes and through sugar cane fields to Consiejo Shores. We were met by the wonderful staff and got Dave to his room about 2:30 Belize time. He is sharing the room with another ALS patient (Jerry) who was diagnosed in Nov. Dave was tired yet so excited that he was radiating. Doc David Blyweiss oriented us to what we should expect over the next two weeks…..he is very personable and no question is too silly to be answered. We are a bit overwhelmed by all that will be going on and will try to be as clear as we can be.
The Chief Medical Officer, Dr. Mitchell Ghen is a neurologist and came to do the history and review Dave’s medical record. Dave’s tumor necrosis marker and sed rate is extremely high, which indicates high inflammation and muscle death……this is both good news and bad….the bad is that Dave has progressed quickly with the disease, the good is that the stem cells will use the high inflammation as a signal of where to target themselves….this will be the vehicle for the stem cells to work their magic.. The doctor will also be able to use this as a very clear marker of improvement. Dr. Ghen has decided to start Dave’s stem cells sooner than he expected; he would normally be immune suppressed for a few days before treatment. So what we thought of as bad news, was God’s way of getting David’s body ready to show the new stem cells the proper path to take. BTW: Dr. Ghen happens to be a Rabbi as well and prays with his patients before treatment…..we shared with him our belief in prayer and told him about the prayer bash we had to ready Dave for the trip to Eden
We left Dave surrounded by 3 doctors and 4 staff and they were ready to take EKG and muscle tests and who knows what else. There is no lack of beautiful looking and caring nurses here…Dave has his Cheshire cat grin on his face.
Visiting hours are 2-5 so we will be able to answer more questions tomorrow night. We got to Corozal Bay Inn at 6 tonight and had conch seviche and beans and rice for our first dinner….Dave was in for something a bit blander and the start of IV fluids.

Arrived in Belize

Cindy,Jeannie and I arrived in Belize safe and sound. After a 2 hour drive we finally got to the clinic which is in a beautiful location. We spent the next 3 hours getting briefed and educated! This is powerful science. Got my first IV and expect my first bone marrow transplant on Monday. I just wish i had come here a month ago. Thanks for all the prayers. Keep em coming! More tomorrow as it is late and i am exhausted.

Arrived in Delray Beach, Florida

Well, I am moved by all the love and prayers each of you have shown. God has opened my eyes to the true definition of love through each of you. I cannot express what each of you mean to me as I go through this journey. Your support and prayers are felt deeply in my heart. We are in Delray Beach, Florida today at Cindy's sister's home. She will be travelling with us to Belize tomorrow. We are leaving for Belize tomorrow a.m. Love to all , Dave

Inaugural Blog ! ! !

Here is the inaugural BLOG . . . I set it up . . . Haven't figured out how to post a photo yet but that will come. Enjoy your very own BLOG ! ! !