Help Svetlana in battle with MS
Life is a funny thing. Sometime we do not think how much we were given.
Imagine yourself at age of 26, making meal for friends, when suddenly your vision goes away in one of eyes. Imagine panic and confusion you would have when it doesnt come back. And then doctors would toss you around, and ... then they will tell you you got Multiple Sclerosis (MS). And you are ONLY 26 years old!
MS is a disease that makes you suffer in silence. It’s a slow progression, one day you can practice yoga, the next morning you can’t even get out of bed. Sometime pain is only thing around you, blinding, crippling, pushing you down. There are few forms of this disease, but they all have same end result.
And younger you are, faster it progresses. Some older folks getting diagnosed around 60-70 and pushing 90s now. People who diagnosed around 20s - rarely live past 30.
But Svetlana didnt give up. She is a born fighter, she threw herself at the researching about MS, created one of the most popular MS support sites and helped others.
9 long years battle continues. 9 long years, sometime going to wheel chair, sometime going with cane, sometime just walking slowly - she lives, she fights. Every step. Every day. We, her family, helping her as much we could, but most importantly she has amazing inner strength that keeps her moving, working and not complaining how hard it is for her, how horrible her days are.
Her life became series of visits to doctors, MRI scans, trials with various medical solutions that should help stabilize MS patient.
Alas, 9 years in, every single existing medical solution is exhausted and nothing helped. She starting to detiorate more rapidly than ever before and 10 more active lesions now show up on latest MRI. She shouldnt even be able to move. Yet - she does fight on. But ghost of wheelchair is more and more materializing in front of us through past two years.
Our youngest is 7 years old now, and , bearing with typical MS lifespan prediction she wont see him graduate.
Hematopoietic stem cell transplantation (HSCT) is a
relatively new procedure for MS patients. We started doing research, asking ,applying everywhere. Two places accepted her application - facility in Russia and facility in Chicaco. Both are not free, one is 45K USD and travelling overseas, another is 125K USD (and place where her family can come and visit her). Given recent progression of the disease doctors recommend to do HSCT as soon as possible, but money is where it all stops, as such amount is beyound our pockets for now .
If you got something to spare to help Lana to get procedure done so she can see her grandkids , please donate to this cause. If you stranded - just send Lana smile and a good thought. She can use them too.
Here are some awesome news though - we just came back from Chicago. 5 months followup (quite unexpectedly called in) - and MRI shows NO NEW LESIONS! NONE! For first time in over the decade there are no new developments.
What it means for Lana? She can plan future. And it also means that with your help, with your kind thoughts we seem to do this - HSCT worked as it was everyone hoped and MS progression stopped.
We are still a bit tired (AA flight delayed and turned from evening flight into red-eye, and three days of scary running around didn't help either), but we shot this video to talk about this (and other things) and sort of say "thank you" in person..
Again. Thank you. From the bottom of our hearts. We never could've done it without you.
Sorry, life after we came from hospital was a bit too chaotic.
Lana was (and is) going through hotflashes, a bit of infection (flu) and other things... Blood draws every week, new meds.. Over and over.
But now, we ending 2015, and we end it on good note.
Here is short video we recorded to talk and to wish you all Happy New Year.
And again - thank you for all the support and kind words. We couldn't have finished this year with Lana in such a good shape without your help and support.
Svetlana was doing ok, no white cell count movement. She got two bags of blood today, unlike usual platelets. Which was curious. So almost whole day hooked up to IV again.
We visited friend that just did her transplant today, wished her happy birthday. And then on the way back to room pain hit. She normally can manage it extremely well but she was yelping, screaming, couldn't walk..
Theory is that when you hurting like that - your white cell count starting to go up. So we hoping. But pain is terrible. I added video here, but its a bit R rated. So be warned.
Or just watch helium video to smile.
Night is coming. Hopefully tomorrow will be day when white cells go up. Till then - she is on pain management with oral morphine (which still doesn't take pain away, just shaves edge off). Fingers crossed.
BTW: we have special place for her own blogging that you can find at http://lanapiller.com/ with more videos we made about HSCT and MS, and more stories.
So Day +4 happened yesterday (i.e fourth day after stem cells went in back), first injection of neupogene happened. It allows body to start engraphment (body when body recognizes and re-absorbs infused stem cells back).
Tonight Svetlana didn't sleep too well, and her platelets counts dropped for first time since chemo. It was explained to us that this is normal and typically happens sooner after second round of chemo, but still, makes me worried. Plus she feels pretty horrible at the moment.