Welcome to our Blog. I am new at this blogging stuff, so please bear with me. I hope it is easy for you to follow. I put some links about our favorite doctor on the side bar. Also, the oldest posts are at the bottom or on the previous page, so start there and work your way up. Thanks for visiting.


Thursday, February 25, 2010

Six Weeks Post Infusion

It has been six weeks since the infusion. Janice has had no change with the numbness to her hands and feet. She says she still has the fatigue . . . . but . . . . Bob and I have noticed a difference. We both feel that her energy level has increased in the past two weeks. She has been out riding her bike more and going for a run almost daily. She is talking about her next triathlon. If there is change, it is very gradual, and she does admit there may be a slight decrease in her fatigue.

Okay, I wrote this today, Thursday which is my day off. I spent the day home enjoying the day, and searching for more information on MS. This evening when Janice came home, she was tired and it showed. She said she was tired all day. So with all that said in the previous paragraph, I am hoping today was just an off day for her.

On a different note, with all the hype about CCSVI, Chronic cerebrospinal venous insufficiency the new discovery of by Dr. Zamboni of Bologna, Italy. my ears perked up a bit and investigative skills slowly kicked in. (With much encouragement from Beth-Thanks Beth)-It's hard to coordinate the different avenues presented but I will continue on until I hear the word "Cure". Janice has an appointment for an MRV on March 4th. Hopefully this test will determine if she has inadequate venous blood flow from the brain causing the iron to build up in her brain. I am finding that the doctors that were initially willing to treat this problem are not accepting new MS patients after a short time. Again, we will stop at nothing in our quest for the cure.


Some links to more info regarding CCSVI:

http://www.ccsvi.no/?p=96 MS 'CURE' COMES TO BRITAIN

http://www.ccsvi.no/?p=109 Will drug companies censor possible MS cure?

http://liberation-treatment.com/liberation-treatment/ccsvi Information about the Liberation Treatment for Multiple Sclerosis

Sunday, February 14, 2010

Photos in Israel

1) Ryan, Janice, Melinda and Bob outside the Church of the Nativity,
2) Nativity site
3) Bob at one of the stations in Jerusalem, where Jesus fell.
4) Janice and Ryan walking on the beach after bone marrow extraction

Janice and Dr. Gesundheit and nurse after bone marrow extraction.

Bone marrow

Worried mom and Ryan in the waiting room

Camel in Israel

Janice, Ryan and Bob floating in the Dead Sea

How Will You Know If It's Working?

How will you know if it’s working? That is the question I get asked often. I wish there was an easy answer to that.

We are now 4 weeks post stem cell infusion. Janice has not felt any difference at all. She still has the same numbness and continues with daily fatigue.

Prior to Janice’s treatment I consulted with Professor Slavin via email. I asked several questions and he would respond to them. I will share this informatin with you from one of those emails.

“For your information, we are now in the process of clinical
application of innovative modalities for the treatment of neurological
disorders focusing on MS and related motor neuron diseases, based on
the use of multi-potential stem cells generated from patient’s own
bone marrow cells or from fat-derived liposuction. However, you and
the treating neurologist should be aware of the fact that we are
dealing with an experimental protocol, so although we promise to do as
much as we can, we can never promise successful outcome. “

“Please note: the treatment we can propose to patients with MS has two
major goals:

• Down-regulation of anti-self reactivity which causes the MS to start with

• Regeneration of neurological functions and enhance re-myelinization “

“The treatment we recommend is based on administration of mesenchymal
stromal cells (MSC) which can be prepared following culturing of
patient’s own bone marrow cells. Alternatively, fat-derived MSCs can
be prepared from liposuction of related [preferred] or even unrelated
donors. MSCs are a multi-potential stem cells that can suppress the
destructive autoimmune process and potentially regenerate lost

So with that in mind, I assume that down-regulation of anti-self reactivity may take some time. It may be months or even years before we know if this has occurred.

Regarding the regeneration of neurological functions and enhancing re-myelinization- Since Janice has so many lesions it is hard to know which lesions are causing the numbness and fatigue, and exactly how long it will take to repair the myelin in these areas.

Again, this is experimental, so there are plenty of unanswered questions. We base our confidence on the results that we have documented from those that have gone before us and Professor Slavin’s expertise.

A link regarding the potential use of stem cells for the treatment of MS: http://www.ncbi.nlm.nih.gov/pubmed/18325660?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed


Saturday, February 6, 2010

Three weeks post infusion

Janice is now three weeks post stem cell infusion and here is an update. She had headache, nausea and vomiting for 3-4 days post infusion, and complained of back pressure for about 2 weeks. Janice is quite flexible, and this was significantly decreased post infusion as bending over to blow dry her hair in an upside down position was impossible. Never did she have a fever.

Today, she is back to pre infusion status. Her flexibility has returned, and she has no negative effects. She has not seen or felt any improvements at all. She still has fatigue, and numbness to her left hand and to somewhat of a lesser degree to both feet. Prof. Slavin said "The effect of MSC's is not rapid. Cells must differentiate and home to target areas so no effect is expected so soon." I am thinking that since she has so many lesions this may take a while. While we are anxious to see results, it will be months, not weeks for the stem cells to do their work.

Of the four girls that received stem cells on that day, the other three all thought they saw change soon after the infusion, although one said it didn’t stay that way for long. We hope to stay in touch with them and we wish them the best possible outcome.

Janice continues working at Enterprise Car Rental, and is in her second semester of the Speech Therapy program at Nevada State College, (where she previously earned her BS). She continues with her exercise although not to the extreme she had done prior to her diagnosis of MS.


Thursday, February 4, 2010

Stem Cell Infusion, Athens Greece January, 2010

CTCI is awaiting formal approval from the Ministry of Health to infuse stem cells to non- citizens in Israel, therefore the cells must be infused out of the country. We were notified mid-December that Janice was scheduled for her stem cell infusion January 14, 2010. We were elated! We met another gal in Tel Aviv and I couldn’t wait to hear if she got the same news. She did and we were to meet her again in Athens. Then through the MS Forum we learned about another person that was scheduled for the same day and one that was scheduled for Jan. 12, two days prior to us.

We scheduled our flight on Continental Airlines. This time it is going to be Cheryl, Janice and I. Cheryl studied the subway system in Athens and learned all the stops including the one for the hotel, and the hospital. We reserved a triple room in the Airotle Alexandros, which was recommended to us by the travel agent referred by Orit at CTCI. The hotel was quite nice and included breakfast.

Our flight was from Las Vegas to Houston, then on to Paris. We had an 11.5 hour layover in Paris, so we took the subway and toured Paris for the day. It was cold but so beautiful. (Cheryl remembered the subway system from the last time she was there making transportation easy for us.) From Paris we went on Aegean Airlines to Athens Greece. Arriving late at night, the subway was closed but the buses were still running so we hopped on the bus and it took us right to our hotel. This was about a 45 minute bus ride.

Cheryl and I toured Athens the next day while Janice slept. Jan. 14 was the big event. On procedure day, Janice was allowed a light breakfast, so in the restaurant this morning we met a person whom we had talked with on the forum and on the phone. She had received her stem cells on Tuesday and was already headed home and she looked great. We arrived at the hospital, went to the 2nd floor as instructed, and told the security guard who we were. She led us through secured doors to a nurse’s station. The nurses took us to a room and told Janice to pick her bed. Samira from CTCI was there to greet us and told us that the stem cells were being thawed and would be ready in about two hours. There were a total of four people to receive stem cells on this day. We were told they infuse four people on Tuesdays and four on Thursdays. She also said a team of four come together from CTCI inTel Aviv which included Ilan CFO, Samira BSN and two PhD’s that stay with the stem cells in the lab.

Janice had an IV started in her arm, and blood was drawn from this. The neurologist explained the procedure to Janice. Pretty straight forward, the stem cells were injected intrathecally, which took about 2-3 minutes, then she also injected stem cells IV. The entire process took about five minutes. Janice received 61.23 million stem cells IT and 26.33 million IV. Now she is put into the trendelenberg position for the next 3 hours. This was easy for Janice and she was feeling great. At the four hour point she was told it was okay to get up, so she went to the bathroom. Big mistake, as she returned to bed and this was the beginning of a headache that was to stay for the next two days.

Each of the stem cell recipients had a family member stay the night. This is highly recommended, as it is difficult for them to tend to their own needs during the night. We were given a private nurse for the four to share. Her name was Georgia, and she worked hard to make the girls as comfortable as possible. I brought a thermometer, and was so glad I did, because I was able to monitor Janice with this. We also had a little pharmacy of pain and headache medicines, which Janice took liberally but to no avail. We finally decided that perhaps no medicine was best since it didn’t work anyway. I slept on two chairs and a stool all pushed together (Not comfy!) and Cheryl went back to the hotel, returning with fruit for us in the morning.

The next day, a doctor (we presume) came in and asked Janice if she had a headache. Janice had wet cloths on her head and thought this person was going to help her with these so she said yes. This person took Janice’s head and thrust it to her chest, then said “yes, you have a headache.” Apparently this is the way they check for meningitis in Greece.
For some reason Janice’s headache went away briefly and we were able to leave the hospital. Cheryl hailed us a taxi, not an easy task, and we made it back to the hotel just in time for the headache to resume. Nausea and vomiting hit as we were leaving the hospital, but we were so anxious to get out of there, we just dealt with it. This too was to stay with us for 2-3 days.
Janice spent Friday and Saturday in the hotel. Cheryl and I went out for short times, leaving Ryan to babysit – on Skype. If you haven’t discovered Skype, check it out. It is so neat. Janice and Ryan spent hours talking and Ryan even put a video on in his living room, put the computer in front of it and Janice was able to watch a movie like that. Cheryl and I walked in to find Janice sleeping, computer in bed, movie playing.

Seriously though, if you are going to Athens for stem cells, make sure you have the mobile phone number provided to you by CTCI. If you need help call them. That is what they are there for.
Sunday, Cheryl and I took Janice out for a little adventure. We decided a tram ride would be good for her. There is a tram that goes along the coast. Her headache subsided so we went out. About an hour into the trip she started feeling sick, so we got off, Janice expelled the contents of her stomach and we returned to the hotel. She and Ryan skyped that afternoon while Cheryl and I went out again.

Monday we left for home. We were to take Aegean Airlines to Heathrow in London. Upon or arrival in London we discovered our Continental flight had left us. The next flight was Tuesday. Aegean Airlines so kindly offered us 3 hotel rooms, 2 meals each and transfer passes to and from the airport. Since we arrived around noon-ish, we still had plenty of the day left, so off we go, Cheryl and I toured London. Again Cheryl’s expertise with subways shone. Janice was feeling better, but was not in the mood for sight-seeing so she stayed at the hotel, took two baths, and made a facial mask with fruit she had gathered at the buffet. (Give her lemons, she will make lemonade.)

Our book of choice for this adventure was 90 Minutes in Heaven by Don Piper. It is about a Baptist pastor that had a life after death experience and has vivid details about heaven. I also read Modoc, by Ralph Helfer, a true story about a boy and his elephant, another must read.
Janice was feeling fine on Monday. Perhaps a slight headache, but really minor, no nausea this day, but still feeling back pressure and stiffness. No fever.
Thank you to all for the support and prayers we have received. We have the best family in the world. It is so comforting to have the enormous amount of family and friends praying for Janice. Your continued thoughts and prayers are very much appreciated. Again, God has a plan and our faith remains unwavering.