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HSCT for MS from Russia with Love – Julia’s tale

on April 28, 2016

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This is the story of Julia Summers, Facebook regular and now HSCT veteran

 

Something struck me, when reading Julia’s posts on Facebook that this was a determined woman, a loving wife, mother and a devoted dog lover.  Julia has Relapsing Remitting multiple sclerosis and had been keen on HSCT since first hearing about it in 2011 but her then British neurologist had talked her out of it saying that it was still unproven.

Julia’s name went onto the Russian waiting list and she was given a 2017 date for treatment.  After Dr Fedorenko studied her latest MRI she was pushed forward to March 2016.  She had since embraced HSCT and was about to head off to Moscow from her home in the Bahamas.

Let’s follow Julia’s experiences as, first of all, she prepares to start her journey of life in her fight with MS.

It is March 14 2016:

OMG, Josh sat on his bed and cried tonight. He told me how he was going to miss me and asked me what I would like him to do with his life if I don’t make it through this treatment! The stress is starting to show in both the boys now. I hate having to leave them!

Just took Baxter to the beach in search of his buddies for a rough play before I leave and there was no one around. Now to start packing. I leave here in one hour.

At the airport waiting to board. Sad goodbye to Baxter, who seemed to know, and then horrible saying goodbye to the family! Now my mission to heal starts!

Having said her goodbyes, she flew to London where she needed to appear in person to obtain a visa to visit Russia. Two days have passed:

Just back in from the visa office. Tomorrow I need to get my fingerprints taken and back again on Friday at 5:00pm to (hopefully) collect the visa and pay the fees. I was collected from my hotel and taken to the visa company by a young taxi driver. On the way we were chatting and because of my head shave we got onto the subject of cancer. It turns out his four-year-old niece had cancer and had chemo and is now strong again. He wouldn’t let me pay my fare!

Fingerprints were taken the following day and Julia was able to collect the visa on Friday 18th, as planned. She then enjoyed a couple of days in London seeing family, friends and her breeder’s dog group who met especially to wish her well, before flying on to Moscow, arriving late at night on March 21.

I met Anastasia this morning. She came in at 6:00am to welcome me. She is everything I was told. So sweet and helpful. I have now just met Dr. Fedorenko. These people are so caring!

I have arrived to a beautiful full moon and -7C. Kristina, you are correct, it is a different type of cold here.  Didn’t get any sleep on the plane, so have been given today to rest. They start testing tomorrow … three days of testing, not like the other joke I went through. This is real, I am going to heal.

Not all was peaceful, though, as was explained the following day:

I have a couch outside my door that the Russian people seem to love sitting on and chatting on their phones. Think I will sneak out in the middle of the night and move it! The constant drone is driving me crazy.

A testing time

Had to drop everything and go for my MRI during lunch. I cannot get over what a clean hospital this is … and so big. One more test and then I wait to hear whether I will be treated or not. Fingers crossed!

The waiting was a time of hope and tension that was partially relieved on March 24:

Anastasia told me she had seen my MRI and that I have active lesions on the brain and spinal canal. Apparently that works well for the treatment! Here’s hoping.

Just back from test. Another one later today and then my results tomorrow. I am also moving to the 4th floor, along with my neighbour Chris, to join the other MS patients. It was only -8C last night

fedorenkoResults arrived the next day:

Dr Fedorenko (pictured left) came to my room early. We went through all my tests and my MRI. I am very healthy, except for the MS. I have a 90% chance that this treatment will work for me. He says with my strong, positive mind and heart that I will heal myself and he says with his team’s 90% and my 90% we’ll make it 180% chance that I will heal. He held me while I cried … relief!  I start tomorrow.

 

The treatment begins

An important date, March 26, the time had arrived for the most serious business.

The nurse who gave me my steroid infusion is so sweet. She chatted away to me in Russian, even though she knew I had no clue what she was saying. Everyone here is just so kind and caring! And so today my journey to being MS free has started.

The following morning, Julia was given instructions to take her last walk outside for a while.

Cannot go out after tomorrow. Going to explore the underground section of the hospital now.  I have never seen anything like it before.

I heard last night that three people have arrived, had testing and been turned down in the last month. Thank goodness I didn’t hear that before Dr. Fedorenko came to speak to me.  As it was, I was a bundle of nerves.

steroid infusionSecond steroid infusion done. This stimulates the stem cells. The injections we have at 11:00pm and 3:00am are to start breaking down the bone marrow. Two more like this and then the neck gear will be installed for the final steroids and then the stem cell collection will take place. Here’s to many millions being collected.

Understandably, despite the warrior-like determination, Julia experienced apprehension at some of the stages – but never doubted HSCT.

So scared about tomorrow morning’s procedure. Trying to relax and breathe! This has been my biggest fear all along. I hope it turns out to be minor in the whole process.

Had a lovely walk this afternoon. Managed to leave the hospital grounds and found a supermarket where I bought some butter, a big chunk of cheese, a jar of jam, a sesame seed snack, a Snickers (because I need some comfort food) and a bar of hand soap. It all cost me a whopping $4.49. I then took a stroll and found a beautiful park but didn’t have the right shoes to walk there. Saw my @$$ a couple of times. Met a gorgeous German Pointer named Nora. We had a few hugs and kisses while her Mum was trying to get her to walk, but she (Nora) was happy for my attention. A kind Russian man stopped his car and held the traffic up to let me cross the road. Made it back to the entrance gate where the guard pretended he was considering letting me back into the grounds. My last walk of freedom for a while! Thoroughly enjoyed it but now my legs are wobbly from walking too far.

The following day, March 29, and the medical team made an early start.

PICC line is in … not too comfortable going in and not great to have in my neck, but eyes on the prize! Have had my x-ray and all looks good. Severe bone pain but that means that the neupogen shots are doing their work and loosening the bone marrow. Tomorrow we start the stem cell collection from the bone marrow. A five-hour procedure. If all goes well, it will just be one day, but could last up to three days.

Not all the stem cells needed were collected on the first day, so a second session was required but Julia also had something else on her mind…

Sat here this morning and realised that it is our wedding anniversary today. Seems like a lifetime ago. Sure Richard won’t remember either.

It turned out that the second day of stem cell collection was enough and that line was removed. The chemo line was inserted and the chemotherapy itself began on April 2.

Three days later, Julia had been understandably emotional.

My emotions have been running havoc since being accepted for this treatment. I am strong in myself but am just so thankful to be getting this HSCT that I can’t stop bursting into tears for no reason. (I was warned by a good friend that it would happen). When Dr. Fedorenko took my hand and told me I would leave Moscow MS-free, that just blew my mind. I will be forever grateful.

Another chat with Dr Fedorenko followed, about a most important subject.

julia ahd baxterI had a sit down discussion with Dr. Fedorenko today about Baxter. I explained that Baxter is my life and I cannot exclude him and will want to be with him once I returned home. He told me there would be no exclusions and that I would just have to be careful about him licking me or scratching me. Then he asked me what type of dog Baxter was …. um, I shall show him a photo tomorrow!  Boerboel think they are lapdogs, especially my boy.

On April 9, she found a new sign of the next stage of the treatment:

Just went to the water fountain and on the way back saw a green sign on my door stating that I am now in lock-down. Welcome to the isolation club. See you ladies and gents on the other side!

Being in isolation is one thing but keeping Julia from posting on Facebook is another.

Today (April 15) is my beautiful Baxter’s 6th birthday. Oh how I miss him and can’t wait to see him soon. xxx

Starting to finally lose my hair (April 16) …. but sadly another whole day in isolation for me!

Being shut away was coming to an end, however. April 17 brought good news.

juliaShouting this from the roof tops, Dr Fedorenko has just been in to see me …. And I am released from isolation today! I woke up telling myself that today was the day …. And now I can’t stop crying! He had to hug me to calm me down. My numbers are up from .026 to 2.35. My immune system is starting to rebuild. He says he can see my hair is still falling out, but I think it is just as stubborn as I am.  It is hanging in there!

Then, on April 18, it was time for the next step.

Dr Fedorenko came in to tell me that my blood work is looking good so they have decided to give me my Rituximab shot today. I will be tied up to this machine for about 5 hours. Tomorrow I finally get to have my line out and one more shot of steroids …. then I am ready to go. I can’t wait to get home but I am definitely going to miss everyone I have met along the way! What a life-changing experience.

julia sc birthdayAnd, finally, the treatment comes to an end on April 19.

No warning …. in early, blood tests taken, PICC line removed and steroid shot administered. These people are so on the ball, I didn’t even get time to think about it. It is all over!!! The start of my new life has now begun and it is up to me to take good care of my new body CAREFULLY.

HSCT veteran now!

Leaving on a jet plane

My bags are packed, I’m ready to go. Just writing Thank you cards and working through my paperwork at the moment. I have one final request and that is to have a photo with the dream team who have made this treatment possible for me.  Hope to sleep well tonight and have a good trip home.

Exactly one month from arriving, April 21 is the day to go home.

Had to leave in rather a hurry this afternoon. Was held up at the Russian airport for quite a while and just made my plane. Had to pay a fine for being one day over the visa limit, even with official papers from the hospital.  Now crashing at Sofitel Heathrow and then catching an early flight home. Will catch up once I am home. Thank you to everyone for your support through my incredible journey. It has been the most amazing experience for me!

Leaving UK early the next day, Julia completed her long journey home.

World traveller returns

Been home about two hours. The staff onboard BA were absolutely fantastic, as were the staff at Lynden Pindling International Airport. So lovely seeing my family again. Can’t believe how the boys have grown! My shadow is once again at my feet.

 

In the future, there will be more news of Julia’s progress after HSCT.

 

 


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