She is in!! We briefed with Dr F today to go over all her tests. Everything looks good, except she has the beginning of cataracts in her one eye & a gallstone. Doc said since she isn’t having any symptoms to just repeat ultrasound of gallbladder in 6 months And keep an eye on her eye. Her veins are weak her legs so, they will keep a close eye on them during transplant, and possibly keep stockings on them.
I was totally amazed by Dr F today. He sat down and went over every test today and answered all our questions. He told us he believes a doctor needs to love his patients, and that it shouldn’t be a hierarchy of doctor up here ^ and patient down here. We need to work together; he will do his part as a doctor & mom needs to do her part by believing 100% that this is going to work., as well as her support system. We believe!!!
Mom has about 30 old, inactive lesions. So the atrophy that has caused cannot be totally reversed. She currently has 5 active lesions that he believes has a lot to do with the decline she has seen in the last year ( active/progressive MS). After treatment, he expects to see those completely disappear and that she will be able to throw away her cane!! ( and hopefully drive again!) He put her EDS (disability scale) at around 6/6.5. He is confident this will halt her MS and reverse some symptoms!!!!!!
She starts stem cell stimulation shots on Easter Sunday! What a great sign! On Monday she will get moved up to the 3rd floor. On the 5th day, he will take out her stem cells. Pray those little stemmies grow so we only have to do it once!! Some need to do 2 or 3 times to get enough! We are going to be Cheering them on!
Of course this is all too much good news for this family, so we had to get knocked down a peg. After being assured and reassured (again) that our bank cards would work, of course they wouldn’t. So we put as much on credit cards as possible, we were still short of today’s payment due to the complications. How embarrassing! They were okay with it, and said they will come back Monday. Nick is working is butt off at home to work all this out. Not sure what we would do without him!! They will start treatment regardless ( can you believe that?!?!). Then the credit card company, even though we told them of our trip, needed us to call to confirm. Well they wouldn’t talk to Nick & our phones even when turned off of airplane mode have NO service! I did some quick thinking and bought skype credits to make a call & thankfully it worked! I strongly suggest, if you are planning to do this do it all on credit cards or Dr F highly suggests wire transfer.
Even with the roadblocks it was a great day, with great news! Let’s celebrate!!
Dad and I trying to get acclimated. Very few people speak English. We order food by pointing and gesturing. I won’t lie, it is quite frustrating & difficult. I guess the shoe is on the other foot, and maybe from now on we will be more sympathetic when we get back home.
In order to get into the hospital, you must pass through security. We show a pass to guards dressed in army fatigues who never smile. Although, I did get a smile from the one & he flashed me the peace sign (and it was only day 2)! Haha On the other hand, we almost had to sleep in mom’s room last night. Our passes were only until 9pm and we had no idea!! We left around 930/10, and they kept telling us we couldn’t leave. I was debating hopping over the glass and making a run for it… the taxi was waiting! After a lot of gesturing and pleading, and studying our passes & us showing them the hotel card they let us go. Whew!!
We don’t have a Russian phone number and don’t speak the language so we can’t even call our own taxi. At the hotel, the concierge does it. At the hospital either dr F does it or we mime and point to the nurses, it hasn’t been easy so far. Damn Americans
We are figuring things out slowly & if this knocks out MS then it will all be worth it. It might be a long 6 weeks for these rednecks though
Quick update: Mom and Patti have been getting a litany of tests done on them the last two days. They are very thorough & are testing them from head to toe. Mom already was given some answers as to why her swelling in her legs is so bad, and been told that they noticed something on her retina that she would need to take care of as soon as we get back. I’m waiting to get more info and briefed on all her test results tomorrow by Dr F. He said he would let us know whether they will be admitted to start procedure or not on Friday.
There is definitely a language barrier. Not many of the staff speak English. Dr F does a pretty good job, and is very accommodating though. They have a girl who speaks both Russian & English that goes with Mom and Patti when they get tests to translate. They also have a sheet with symptoms in Russian and English, that you just point to and they know what is wrong. It is a pretty big change from Snow Shoe, that is for sure!!!
The hospital serves 4 meals a day- breakfast, 2nd breakfast, lunch, and dinner. Some staples we have seen multiple times – fish soup, boiled apples, liver. Needless to say a pizza would taste delicious
Dad and I took mom and Patti outside of the hospital grounds today. We pushed mom in a wheelchair that needed some maintenance (too bad Dad didn’t have his tools!). Moscow isn’t very handicap accessible. There are very high curbs and steps everywhere. But at least they got out a little. Considering none of us speak a word of Russian, it isn’t easy (we should have gotten Rosetta Stone!)
Hey all, sorry I haven’t updated yet. We were all pretty exhausted & jetlag from our journey. It was not easy. We flew out of state college to Washington – where they met us with a wheelchair at the plane for mom and took us to our next gate. That was great, but then they just dump you, and she had to walk down these big long ramps to the plane & up about 6 steep steps to get on the plane. We then flew to JFK. Once again, they met us with a wheelchair. He took us to double check that our luggage was going the whole way through to Moscow (it was, no issues other than some broken toiletries). At JFK we had to proceed to a different terminal, so the pusher took us to the train, and dumped us. She had to walk quite a distance to the next terminal, and when I requested a wheelchair, they advised we needed to be checked in before they could give us one! Come on! Back through security checkpoints we went, where they made her Take her shoes off & walk through & stand in the x-Ray machine like everyone else. At least University Park was considerate. I get security measures, but it was stressful & not easy for her. Proceed to a 10 hour flight & we were all exhausted and totally stressed out.
Dr F sent a driver to pick us up at the airport. He loaded us up , and brought us straight to the hospital. Driving in Russia is crazy! I would never want to do it! Buckle up, you are in for a ride! Dr F met us with a smile and a handshake, and off to our rooms we went. Mom and Patti got admitted, and we paid for the initial testing fees. Our bank card wouldn’t go through, even though we checked & checked before we left, so we swiped a credit card and it’s automatic. Very frustrating though to know how diligent you were and it still doesn’t work. Once we got everyone settled, Dr F called us a taxi to the hotel. We were all up for over 24 hours at that point.
Mom and Patti had no wifi at that point, so we couldn’t communicate. I’m happy to say that is fixed, and now we are connected. Their days have been full of every test imaginable. Very thorough, but very exhausting for them. If you sent them messages, they will reply soon once they get some R&R.
I will update again soon!
Every time I fly, I can’t help but picture the scene from Armageddon when they sing “I’m leaving on a jet plane, don’t know when I’ll be back again.” Well, we do know when we will be back again- in about 6 weeks!
Well, we made it through the first two flights on the puddle jumpers. We got mom through airport security ay JFK, and now waiting to board the flight to Moscow. A little advice, don’t sit in row 2 in a puddle jumper from state college to Washington, the propellors are right beside you!!We were not fans of that (maybe it was just me)!
I will update everyone once we have arrived in Moscow!
Wow! We have been so busy preparing to leave, I just can’t believe that in a few days we will be in Russia! It is just around the corner now. Monday is a big travel day, and we will be arriving in Russia on Tuesday. If this small-town, never been out of the country before family can make it to Russia, the HSCT treatment will be a piece of cake
I will do a much better job of keeping up with this blog once we start our journey on Monday.
Can’t express our gratitude for everything everyone has done to get us this far.
Thank you all for supporting my mom and our family during this journey! It really means the world to us! Thanks to all of you the thermometer is starting to rise… let’s keep it moving!
I will be holding a fundraiser on March 1, 2014 from 7-10 PM at Barnaby’s of West Chester beef n’ beer style. $30/person and $55/couple for a 3 hour open bar, buffet, raffles, and tons of fun! If you around the area, please come join us in the fight to knock out MS!
Nick and I are both selling t-shirts. They are pretty awesome, so you should pick one up! Rosie the Riveter shirts are $15; Knock out MS fists are $12.
There are Marianna Hoagies being sold starting today thanks to Dave & Deanie. A cash bingo on March 9th, & a benefit dance at the Clarence Moose (tentatively March 1). Thank you to the committee in Snow Shoe for all you are doing. It is truly heart warming & amazing.
My brother Jon held a dinner at the loading docks and raised $1,064! Thank you Jon & Sharon for all your hard work, and to all the people who attended!
I am also so thankful for all my friends and family who have donated through this blog. I cannot express my gratitude enough.
Thank you all for Raising the thermometer!!!
I know everyone is wondering why we are going all the way to Russia for the stem cell transplant. I will tell you, that it wasn’t an easy decision. We all wish that we could stay in the country to get this procedure completed. After a lot of research, we realized that unfortunately, it just wasn’t an option for my mom for a few reasons.
This treatment may be available to the public in the United States in, oh 10+ years. But, Mom, and anyone with MS, just does not have that kind of time to wait. She’s getting worse and unless we do something TODAY, the progression continues.
There are a few clinical trials available in the United States. We did check into those. Chicago was the main one. It is $150,000 dollars for a clinical trial, that Mom would not be eligible to receive. The age limit is 55 years old, and it is only for those in the relapsing-remitting phase of MS. (Mom is 56, and in secondary progressive). The thing with clinical trials is that they need good results to get funding and to get it (cross your fingers) approved and available for the public.
Russia, well from the moment we heard about it, it was almost too good to be true. I don’t know about you, but when things seem that good, I immediately distrust it. It helps that mom was able to be in contact with Brooke, not long after she came back from Russia and her HSCT adventure. We also started following the blogs of the others that were going through HSCT with Dr Fedorenko. Brooke gave Mom Dr. F’s contact info, and he immediately responded. There is something to be said when your doctor makes you feel comfortable, acts like they have time for you, and is 100% invested in making sure this works! There is also the money aspect, $40,000 is much less than it is in the USA (even with the added expenses of traveling to Russia). We are also super impressed with the lengths they go to to keep things sanitized and the importance that is placed on the isolation phase. Her immune system is being “rebooted” so it is very fragile during this time. Dr F and his team’s track record speaks for itself.
This was not a decision that was entered into lightly. We have troubled over this, researched, discussed as a family, and finally came to a decision. It is time to KNOCK OUT MS and break free in Moscow!
Hello All! I wanted to start this blog to keep everyone up to date on our journey to knock out MS! Mom isn’t much of a “blogger” so I thought it would be nice to let y’all know what is going on every step of the way. It isn’t going to be easy, and I’m sure there will be ups and downs, highs and lows throughout the entire process. This isn’t an individual journey; she is going to need the support of the community, family, friends, and even strangers to make this happen. She has been trapped in an MS prison for over 20 years now, and HSCT and Dr. F are giving her hope to break free and start living again.