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.


Tuesday, January 26, 2010

Bone Marrow Extraction

Bone Marrow Extraction

Oct 4, 2009. Our trip to Tel Aviv, Israel included Janice and Ryan, Bob and I. It is a memory to be with us forever. We spent a total of five days, visiting the Dead Sea, Mediterranean Sea, Jerusalem, and Bethlehem. Our stay at the Hotel Vital in Tel Aviv was most convenient to CTCI as it is in the same building. Our rooms being on the 5th floor were one elevator ride away from the Doctors office where the bone marrow extraction took place. We met the staff at CTCI and Benjamin Gesundheit MD PhD. He is an associate of Professor Shimon Slavin MD(the brains behind the stem cells). Dr. Gesundheit took a thorough medical history and did a physical exam. He explained the procedure, and expected outcome.

The next day was the bone marrow extraction. Janice was taken into a small room with a beautiful view of Tel Aviv, attached to monitors, sedated via IV with propofol and bone marrow was extracted from her left hip. This is done with a syringe and needle and took all of half an hour. She was awakened immediately after and we drove to a nice restaurant on the beach and enjoyed lunch. After lunch we walked along the beach, one of my favorite memories of this trip, as it was so beautiful and calming. As the four of us walked along the beach that sunny day, I am sure there was only one set of footprints left in the sand.

Janice denied any pain, but thought she might have been slightly sore for a day or two.

Professor Slavin was not in Tel Aviv at the time of our visit therefore we have not yet met him. We were given the grand tour of his office though. He has a beautiful office Top Ichilov at the Weizman Center with views of the city and sea. I found it intriguing that he writes on his windows. In the movie ‘A Beautiful Mind’ John Forbes Nash Jr., a math prodigy/ mathematical genius also wrote on his windows. Now I know it may not be anything but seriously, who writes on their window?



On Thursday March 5, 2009 Janice returned home from the gym and was complaining of numbness to her left arm and left leg. She was uncomfortable and wanted to know what to do. We went to a doctor and described her symptoms. He suggested she follow up with a neurologist. Yeah right! My daughter is the picture of perfect health! She works out daily, participates in triathlons and marathons and eats all the right things!

Saturday March 7, 2009 Janice returned home from the gym, this time complaining of numbness to her left side, and a gripping feeling. Ryan called his physician friend, who is an ER MD at St. Rose Hospital. He suggested Ryan bring Janice in and he would give her the workup. They did just that. Three hours and one MRI later Janice was on her way home with a diagnosis of Multiple Sclerosis and a referral to see a neurologist Monday morning.

Janice’s brain MRI report stated that “there are approximately fifteen T2 FLAIR hyperintense foci throughout the supratentorial white matter. That led to sleepless nights and GOOGLE MS! Well according to several resources, MS may not cause much trouble for years if ever, and people can continue on with normal lives.

Monday March 9, 2009 our first visit to the neurologist. Due to her discomfort level, and to expedite further testing, Janice was admitted to the hospital where she received 5 days of steroid treatment and further tests. It is now official. Janice is diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). After this treatment she was feeling pretty normal again and had started taking a drug for MS called Copaxone. This was to be short lived.

By the end of the month, Janice was having a relapse. Her symptoms included more numbness, fatigue, forgetful, repeating herself, drawn out speech, and with each day adding a new symptom, left foot dragging, and eventually fell into the bathtub, with no intention of even taking a bath. During this relapse Janice had uncontrolled giggles so we laughed ourselves silly, leaving us with fond memories and embarrassing moments. We laughed 'till we cried. Then I cried some more. Because of her difficulty with balance during this episode, one of our memories is all the crooked pictures hanging on the walls of our house.

April 7, 2009, Back to the hospital! This time the treatment is steroids to be followed by plasmapheresis. The brain MRI states “there are too many to count bilateral white matter lesions.” She also had a spine MRI which was normal (thank goodness for a normal one, ‘cause this mama is loosing it). In a 30 day span, her MRI’s went from 15 lesions to “too many to count”!
After this hospital stay, Janice is feeling pretty good again, and in June starts taking a different MS drug called Rebif.

July brings on another event. Janice has the numbness to her left side which we now know as the MS hug. (Isn’t that lovely) fatigue, vertigo, and now numbness to her head. Brain MRI shows more lesions. Is it possible? Spine MRI, normal (whew!). This time we did a treatment of oral steroids, but the results are not good enough so we go back to the hospital for plasmapharesis.

In September, 2009 Janice starts on another MS drug called Tysabri. This is given IV once a month. It works! Hallelujah! Since this first dose, Janice has not had a relapse. BUT, this little miracle drug has a wicked and nasty side effect called “PML” (Progressive Multifocal Leukoencephalopathy). PML is a virus that attacks the brain, is often fatal, and has no cure. To be honest the virus is fairly rare, but the outcome so bad that it is a serious consideration for those taking Tysabri. We know early on that we can only allow Janice a limited time taking this drug. So the question remains, how do we continue to fight this disease for the long haul?

Sunday, January 24, 2010

About Us

My name is Melinda and I am the mother of three kids, Cheryl, Janice and Brad. My kids are great, and I love them dearly. (I know-that's a mom speaking). Last year Janice was diagnosed with Multiple Sclerosis. God has a plan. We know that He has chosen Janice for a reason. It was so heart wrenching to have this diagnosis join us for a lifetime, but I know He is in control and will take care of our family. After the initial shock of the diagnosis, I began my search for treatment and support for my daughter. In doing so, I came across the MSWorld forum. It was there I discovered that there are many people with MS, all so very willing to share their experiences, and all wishing for a better treatment available to them. These people have become very dear to me. My daughter was diagnosed with MS in March 2009, and after several relapses, I discovered a treatment that many people were doing. Stem Cells! I remember after discovering this thread on the MS Forum in July feeling like there was some hope to slow down the progression of MS, and together (Janice and I, Ryan and Bob our S/Os) started exploring this treatment more seriously. We discovered that there are several places worldwide offering stem cell treatments, and after learning more about each, we sought out more information on the procedure done at International Center for Cell Therapy and Cancer Immunotherapy.

I feel gratitude to those who went before us, paving the way, and posting with great detail, step by step information on how to contact Professor Slavin, details of their own experiences and any information they have gained regarding this. With this information, Janice and I agreed we must give it a try. The purpose of this blog (with Janice's permission) is to keep our family, friends and fellow MSers informed of Janice's progress, and perhaps expose others to new ideas. - Melinda