A Christmas miracle ...

This is the story of a magical night. 

As some of you might remember, a few months ago a dear neighbor came and gave me the money she had gathered selling hot chocolate last Christmas. She never found a charity to give it to, and I was a deserving cause according to her.

Well, a few weeks ago she told me they would be selling hot chocolate again this year and I was the 'official' cause this time. I felt blessed. Overwhelmed. Happy. In tears. Thankful.

Every year for Christmas, our whole area puts lights on the houses, lawns, some like big blow-up figures, others flashy lights. There's a lot of lit reindeer, Santas, snowmen, candy canes, nutcrackers. Some go really all out and install spotlights that shoot way up in the sky, or screens that run movies all night. Down the road there's a very dedicated Santa that shows up every day from 7 to 9 to greet each car. Sometimes he's joined by Mrs. Claus and I think there's even an elf. Anyway. It's a big show and people love it. Tons of cars driving by, buses sometimes too. You really have to time it if you have to go somewhere, and try to get out before the craziness begins. But it's all worth it. Children love it and why not say it, adults too. I think we just use the children as an excuse to drive and see the lights.

Everyone in this household was excited about the hot chocolate sale. It's a big night.

But I'm also Chilean. And we, as Chileans, are always expecting the worst to happen. All the time. I was sure something would happen the night that the hot chocolate was going to be sold. Horrible storm. Electrical outage. Snow blizzard. Heck, we don't have earthquakes here, but that could also happen. You just never know.

But nothing happened. All my little helpers had their Santa hats on and out we went. Everything was set up to sell the hot chocolate. Table, music, big electric kettles, cups and lids. But what I saw the most was love. My neighbor's family from Quebec had come to stay with them for Christmas, they don't speak a lot of english, had never met me before, but all I found was big hugs from them. Big smiles. Other neighbors joined in too. Children, all helping for the cause. My cause. MS. It still makes me tear up a bit. There were signs 'Hot Chocolate $1 for MS'. 

Some people felt the need to park their cars, get out in the cold and come to talk to me. Give me a hug. They knew someone with MS. A sister, a brother, a parent, a daughter or a friend had MS. There was this girl that still makes me regret not having more time to talk to her and her mother. Her family thought she had a stroke, she was in the hospital for 2 weeks without being able to move. Then she started walking with difficulty. She was walking to me with a cane, all I could think of is 'I hope it's not MS'. Then her Mom tells me she had been diagnosed with MS two days before. She's 22. It broke my heart, still does. So young. I wish I could send a message to her to somehow to find me again. You never know. I kept telling her Mom 'HSCT, remember, HSCT. Read about it please !!'. I really hope she remembered.

Anyway ... all the hugs from people I don't know, all the encouraging words. Having my family there, my neighbors, people just happy to give, made me realize I'm so lucky. I don't know how else to explain it.

I'd like to share some pictures of that magical night with all of you.

This is what my neighbor's house looks like. I look at it every night from my window. Beautiful.

I even got to have the help from Santa !!

Wish I knew her name. All the best to her !!

Yes, pups wanted to help too !!

This was the hot chocolate serving station with the direct help of my 3 yr old.

Me and Julie.

Anyway ... it was a big night. Big hit. People were very generous. I feel blessed, once again, to have so much love around me.

Have a wonderful last few days of 2014 and may the new year bring you happiness, love and laughter.

:)

Ho Ho Whooot ???

Oh my, time flies !!

I've been busy the last few weeks. Attending sports and school events, organizing different activities, finishing touches for this holidays, planning our Christmas dinner, etc.

We are almost at the end of December and I haven't had much time to think about how close my trip to Moscow is. Getting very excited .. hopefully Santa will get me that adapter I still need for my electronics (hint hint).

I did finish working on my two older daughters' stockings and I think I never posted the pictures of them. Here they are ...

They look beautiful, a bit smaller than I thought, when you compare it to the humongous I made for my husband but that may be good news in the end .. lol.  They are already hanging off the fireplace waiting for Santa. Working now on the next one. :)







It's been great to read all the good wishes. It's also been great to hear how well the last transplantees of this year have done in Moscow. Nice to hear Dr. Fedorenko and staff do take it easy once a year and get to have a break. My wish is that they relax and rest to start fresh coming January... by the time March comes they will be in great shape again. Lucky me !!

My children just started Christmas break. That means they get two weeks off from school. So they are very excited, even more when they wake up every morning and realize there's only a few more days until Christmas. 

I also have a few more pictures of the 'Flip' bracelets. Here they are ...

My BFF Kay, Chile

Nancy, Sari and pups, Maryland

If you wish to get a couple please just let me know. As you may have read before I don't charge anything for them, just the cost of the shipping. My email is : xxiimmee@hotmail.com. I still would like for the bracelets to be all over the world and Flip it big time to MS. To my knowledge, there's a few in Chile, Canada, United States, England, Norway and some in Australia. Some others are making their way into Germany !! Thank you !!

Again, I appreciate all the support, words of wisdom, comfort, answers to any questions I get about the treatment or stay in Pirogov. All the success for the patients leaving the hospital in the next few days and remember to take it easy. Thanks for all the new friends I've made. From far and close. MS is still a mystery but it has brought a lot of us together, embarking the same journey. Here's to us.



I wish everyone, from the bottom of my heart, a Merry Christmas, Happy Holidays, Feliz Navidad.

:)

Me and my doctors ...

This entry was my husband's idea. Any complaints please write directly to him .. lol.

My relationship with doctors has been a very happy one. Reason ? I haven't needed them much. Up until I started having babies (back in 2005) I really didn't go much to visit doctors. The annual dental check up, the annual gyn checkup, the every-two-year eye checkup. Done. Now, as you all may know by now, I grew up in Chile, where you have to pay for health. Every drug, visit to the doctor, test, prescription, etc. You pay for everything .. so maybe that's what kept me healthy.

Then I moved to Canada in 2002. Free health .. wahooo. I got to meet my family doctor (which I kind of inherited because he is my husband's family doctor as well). Very nice person. Quite capable and even though I didn't have to see him much, he is the nicest kind doctor I've met. Always greeting me with a heartfelt hug and a smile. He'd have an answer for my questions and if he didn't, he'd look it up. Always taking the time to chat after the medical stuff. What else can you ask for. 

Then, in 2004 I got pregnant. My family doctor, Dr. S. sent me to Dr. K. He would deliver my babies. I was blessed again. Best doctor ever. Funny and relaxed like us. Busy, always had to remind him what number baby I was pregnant with .. lol. But he was very good to us. Had four natural deliveries with him. Nothing to complain. I remember every time I was at the Hospital, about to have the baby and the contractions would stop, I'd ask him 'do your magic, cause I'm ready for this'. Sure enough ... whatever he did worked perfectly. Still see him sometimes at my children's school. See ? I live in a very small community. So, it's a good thing we were very lucky with the pregnancies and him.

Then, I started with my MS symptoms. As I was seeing my family doctor more (Dr. S.), every couple of months with my children's checkups, I could ask him about my weird symptoms whenever I visited. My left arm feels numb and tingly ... 'must be a pulled nerve, stop doing what you're doing'. Checked. My leg is going funny ... 'maybe you're over exercising, give it a break', checked.

It was time for my annual check so I tell him the symptoms aren't really disappearing ... the heaviness in my left leg and the tingly sensation on my left fingertips never went away, I say ... this time he looks at me seriously, very unlike him, does a few physical tests and tells me I'll have to go see a Neurologist. Big eyes !! Oh shit ... that doesn't sound so simple anymore. So he refers me to Dr. N.

The only problem of health being free, is that appointments aren't that fast. I had to wait from November until February, to see Dr. N.  Too much time in my hands. I surfed the internet ... and quickly realized all the symptoms I had now, and some in the past, made sense with having Multiple Sclerosis. Nooo, it couldn't be .. what is MS again ? So, come February I go see gentle Dr. N. He sends me for an MRI and other tests. I go see him for the results, thinking, it has to be simple to fix, it can't be MS. Well, in the kindest, nicest way he tells me I have MS. I remember looking at him with big eyes. For the first time in many many years I had nothing to say. 'Do you have any questions ?' he asks. Well, he quickly realized that I was devastated and wanted to leave his office the fastest way possible. Little did I know that would be the last time I'd see him. If I had known I would have tried to have a more proper exit. Not running wild sobbing like. Anyway ... if you're reading this Dr. N., thank you for your kind words. If you saw me now you'd be so proud. I'm all accepting and knowledgeable about MS. Sadly, before I left his office he said he doesn't treat patients with MS, so he'd refer me to the MS Neurologist ... Dr. C. Ugh.

So now I'm in Dr. C's hands. I had to end up with the crazy one. He has smiled to me twice. Once when I told him I'm originally from Chile and he told me about his big trip down south and that he loved it. Second time, when I told him last December that I'd start my treatment with Tecfidera (MS drug). He smiled and almost did a happy dance to this one. Weird. Most of the time, when I see him, he takes about 5 minutes to read my file. I'm sitting there, across from him and he reads my file. Just think how long 5 minutes can really be. He takes all the time in the world to do this. Maybe he does it on purpose ??  He finishes, asks me if there's anything new and he writes down what I say. Very old fashion like. I mean, I don't really know him, he might be the nicest person to other people, but to me he's just not there. He's the guy that 'knows'. He should be open minded, answering my questions, guiding me a little ... I remember what he said when I asked if it would be a good idea to get a disabled parking permit. He said 'I see, we're getting desperate' ... What ? Really ? When I asked him about the Zamboni treatment he said it was a piece of garbage. Then I discovered HSCT. I asked his opinion about it and he asked me if I wanted to die. Why would I be so desperate to do a treatment with chemotherapy, he said. These are the guys that know. These are the guys that are treating patients with MS. I understand that he's a Neurologist. He doesn't know much about HSCT. That treatment is done by Hematologists (blood doctors). I get that .. but shouldn't they tell us, MSers that maybe there is a light at the end of the tunnel ? There is a possibility to look into this ... instead of quickly get you into drugs that can cause brain tumors or death as a side effect. Shouldn't they also tell you about this aggressive treatment that could stop your MS ? Food for thought.

Well Dr. C., I am desperate. My mind and my heart tell me HSCT is the right thing to do. It makes sense. I'm desperate to stop this progression. I want to continue being independent. I want to be here for my family and children and myself. Yes, I'm desperate if you want to see it that way. I think I had to see him again about now ... can't remember and really don't care. He's not going to be any support. I wish, one day I can go see him again without using my cane. Do a happy dance right in front of him perhaps. I was going to say kick his desk too, but who needs violence .. lol.

This brings me back to dear Dr. S., my family doctor. He's been my medical support. I told him about HSCT when I first heard about it. He didn't 'throw it in the garbage', like Dr. C. He only said to read all I could about it, the good and the bad. Do your research first, he said. So I did. When I saw him again this past September I told him that by the way I'm having HSCT done, in Russia. And I asked for his personal opinion. He said he understands why I'm doing it, and then he said in an apologetic tone that current medical treatments for MS are very mediocre. I couldn't agree more. He got a big hug.

There's one more doctor missing in my list. The one I'm going to meet in Russia. Dr. F. I've only heard good things about him. How caring, whole hearted, empathetic, thorough and good person he is. He is there to heal you. He smiles.  But I want to see it with my own eyes. Then I can tell you.


Here's a few pictures of this week's Flip bracelets ..

Sandy, Washington

Kisha & family, Ohio

Kris & family, Alberta-Canada

Let's flip it people !! Love this last one .. lol.  The requests for the bracelets have winded down. There's no envelopes in my 'to send' pile right now. It might be the season. If you would like me to send you some please send me an email to xxiimmee@hotmail.com with 'bracelets' on the reference. I only ask for you to donate the cost of shipping them. It's really easy, just use the Donate button in this page. 

I thank everyone that has donated already and has sent me the pictures. It is so nice to open my email and find more people helping me to flip it to MS. Also thanks to everyone that sends me comments about the blog, or that sends me messages. I feel the support, the love, the encouragement. Thank you.

Have an excellent week.

:)

Under four months to Moscow ...

Actually, 3 months and twenty two days to go ... yes people, I'm counting the days. I even have a calendar in my tablet. Like a child I open it every day and see the countdown get lower and lower.

It was nice to talk to my dear brother on the phone the other day. He will join me in this medical adventure to Moscow. We'll meet there in March. He will go all the way from Chile and I'll go all the way from Canada. It will be great.  I was saying it was a nice talk because I briefly walked him into what HSCT treatment is about. It served me as to check if I know all the steps. Believe me, there's many. Fellow HSCTsers know. Now, I'm really bad at remembering all the technical stuff. T-Cells, white cells or red cells. This is why I appreciate other members posting all these details which I'm sure I'll get to when the time comes ... to me this treatment basically kills the cells that produce your MS or whatever Autoimmune Disease you have. I only need to know that and remember the basics. 

So to any of you that are interested in what is HSCT, in a very basic way, here is what happens right after you get to the Hospital.

1) You meet Dr. Fedorenko.
2) Pay for the testing that is coming in the next four days (about U$1,000).
3) 4 days of testing. To make sure your body will take the toll.
4) Dr. F gives you the ok to continue with the treatment and I pay the remaining U$39,000.
5) 4 days of stimulation injections (at 11pm and 3am). They stimulate your stem cells from the bonemarrow to your blood stream. This way they can be collected through your blood later.
6) 1 or 2 days of stem cells collection. They need to get up to 2 million of them.

.... this is the time when my brother should be departing ..good .. I'll spare him the really ugly part .. lol .. should he give me the official mohawk shave ? opinions ?

7) 4 days of chemotherapy ... this is what kills the bad cells.
8) 1 day of rest ... I figure I'll need this by then.
9) 1 day for transplant ... my good stem cells are going back in !!
10) Up to 10 days of Isolation to give the time to your body to get its numbers right (first down and then they need to go up). Remember, your immune system will be like a newborn baby.
11) Spend remaining days in Hospital, out of Isolation getting ready to leave. They also give you a dose of steroids so you can fly home like Superman, or Superwoman. May these effects last !!

All this should take around 30 days.

I'd like to fit in the first few days some site seeing with my brother, my Bro. We are in Moscow after all. So hopefully I'll be able to fit some of this during this time. Need to get some Russian dolls for my children .. someone suggested to get them before hand on Ebay .. lol .. my extremely want-to-be organized self says yess !! ... but then my other self convinces me that they wouldn't mean the same ... me buying them there, about to have a treatment that will change my life, hopefully. That time of the year might be my favourite too. Spring. New blooms will be in the air ... it's going to be dead cold for him though .. hahhaa. And I'm sure we'll get to meet wonderful people too. I tried to explain that to him on the phone ... but I'm sure he kept wondering 'why would they care'. Well, I'm sure all the carers, spouses, parents or friends that take a month off their lives to go and accompany a patient doing HSCT, do care. I told him about the crazy Australians .. lol, haven't said anything about their vegemite ... let's leave that until the time comes. I've also told him we are all like a big family, but I understand that.  Uless you are in my shoes, it might be hard to get.

So that's the basics of the treatment. My main goal in going to Russia is to get HSCT and finally Flip the {bird} to my MS. If I can squeeze some site seeing with my Bro, even better. If not, there's always the future to go back to Russia and explore. Dance the limbo on my way to Red Square.

The return home is a bit more uncertain. I guess it depends on your level of disability. I've tried not to think about this too much and mainly wing it .. as I do with many other things. I know I need to keep away from crowds for the first while ... or sick people/children (cough cough ... stay away from Mama four children of mine) .. do not get close to any animals (I guess visiting my inlaws farm with cows is out of the question) .. clean every surface I touch and wash/sterilize hands whenever possible. Some people go back home and need to rest for a couple of weeks straight .. some others seem more mobile ... it seems you can start exercizing with a Physio after 2 months. Other than that I'm sure I'll adapt. Not even thinking about the routines in this house ... Will I be able to do the weekly grocery shopping ? ... cooking ? ... will I be able to do the laundry or will that be too much too ? Drive my little one to Nursery School twice a week ? I will try to slow down on the children's extra curricular activities in the spring, so I don't have to go out so much ... other than that, I'll adapt, we all will. Life is about adapting is how I see it.

Lots of other things happening right now. Christmas decorations are in full swing. My husband finally made it home yesterday from Newfoundland. So the outdoor lights are being installed. The indoors is done, kindish .. I'm skipping some extra little Christmas trees that I had here and there last year, then I don't have to put them away .. lol. Call me lazy .. I just see it as practical at this point. Thank Goodness I left a Christmas village on the china cabinet last Christmas ... when I saw it again in March (yes, as you guessed, we don't use that room much) and thought .. nahhh .. December is close enough !! So now that's done too !! hahahaa. I finished my two oldest daughters stockings .. and they look beautiful. They are hanging on the fireplace. Started on my son's now ... and it's going quite fast, but won't rush it. I'm hoping to bring this work to Russia to stitch my way through them there ... I'll have so much free time. Maybe I'll try to sneak it into Isolation.

So that's about it. It looks like December is going to go fast. Very busy month, lots of school, sport and family functions. Short days and long nights. But I still love it. There's something about Christmas, about the lights, listening to my daughter play Silent Night on the piano. I miss all my loved ones down in Chile roasting themselves in summer's hot weather. But there is something so powerful in having a white, dark, cold Christmas.

My wristbands are going well. I need to pick it up though .. a bit more than 3 months to go and the box doesn't seem to be any lighter ... lol. Keep the pictures coming when they arrive. There's some ladies in the US spreading the 'Flip' and I really appreciate it. Again, if you want to get some just send me a few words to my email : xxiimmee@hotmail.com with the word 'wristband' or 'bracelets' on the reference. Let me know your address and how many you want. I only ask to cover the cost of mailing them. I do my best to try to flatten them up but I'm not convincing the Mail Office ladies. At this point they laugh when I get there. I guess at the beginning they thought I was trafficking something .. lol ... so I showed them the bracelets, told one of them my story and where I'm headed. I live in such small town that one of the ladies that works there is the sister of the former owner of the house we bought last year !! Small round world we live in.

Here's some more pictures ...

My God-daughter Fran, Chile

Barb, Michigan (love the braccelet, ring and nails combo !!)

Beth, Wisconsin

Janet, Michigan

Kisha and her boyfriend, Ohio

Thanks again for all the encouraging words, advice and support. They mean the world to me. Thanks also for the constant information from patients in Pirogov Hospital, Russia, right now. All the best to you from the bottom of my heart. I'm glad some of you are really enjoying watching the snowfall. Believe me, I get it. I came to Canada from Chile. It's summer there right now and we don't really get snow in the city. I know what it feels like to see that snow fall. I'm used to it now, but it's still pretty to see ... just not so pretty when you realize you must go out and dig yourself and the car out because you need to go grocery shopping .. lol.

Have a brilliant week everyone !!

:)