Locked up with a new haircut

The morning after mom got her stem cells back dad and Jon were switching places.  We had it set up that the hotel would have a taxi there at 5 am to take dad and I to the airport to pick up Jon & get dad on his flight, and another taxi would pick Jon and I up at the airport for transport back to the hotel.  We worked with someone for a week, checking daily to ensure this was all in place.  Well, it didn’t work out (go figure).  So at 5:15am I ended up yelling and crying in the hotel lobby trying to make the nice man who spoke a little English to comprehend why I was so upset.  I give him so much credit, he didn’t get worked up at all,  he got us a taxi, and gave me his personal phone so they could make sure a taxi was coming for us & even spoke with the taxi driver who picked us up.  The whole morning was a fiasco, but it worked out in the end.  Dad was off to the good ole USA, and Jon and I got back to the hotel eventually.  The girl we worked with to set everything up met us in the lobby as soon as we walked in the door.  She got us checked into our new room, and had our immigration cards stamped and brought directly to our rooms, and had someone switch my stuff to the new room.  She was very helpful, and very upset that we had to deal with that.  No reason to be upset since it ended up working out.

Once we got settled, off to the hospital we went.  Mom was doing much better.  Very happy to see Jon, and that he made it safely.  She was back to her self just totally wore out.  Doc said numbers are good, and she would enter isolation the following afternoon.  We spent the day with her, and worried about Dad making it home okay. Lol

Early Wednesday morning, we got to the hospital so we could see mom one last time before isolation started.  Doc F came in and went over her numbers, said he was happy, and she would enter isolation around 3pm.  So pretty soon in comes a nurse with hair clippers, and points the chair. Guess it’s haircut time! Lol she giggles a little, and gives mom a Mohawk so we can take a pic then off it all comes.  Jon told the nurse it was her turn, she giggled shook her head no and out the door she went.  We tested out some hats and scarves, there were a couple tears.  Even bald, mom is beautiful.  I think she looks adorable, even if she doesn’t want to hear it.  She got a kick out of all the different colors of hair.  It went from blonde to black and every shade in between! Haha

A little rest, and some more fluids.  They give a lot of isolation directions at once, and it can be a little overwhelming.  Pretty soon they came in, and kicked Jon and I out.  I didn’t want to leave, may have been a little misty-eyed.  It isn’t easy leaving your mother in a foreign hospital that isn’t very handicap accessible, especially when there is a certain degree of self-sufficiency that they require.  A piece of advice – if possible, come before you progress & if that isn’t possible, and you do have a certain extent of disability, bring a companion – you will need it (more on this in a future post). All the things your body is going through, the MS symptoms become exacerbated while here.  I’m told this is “normal” and temporary.  You may get worse before you get better – but that still doesn’t make it easy.

It has been a tough few days, but the next 10-12 are spent in isolation for mom.  She is in good spirits.  I was talking to her last night, and she said well I think I’m in for the night. Haha I got a kick out of that, cuz well she’s locked in tight. Through all this she still has her sense of humor, and is one strong woman.  Isolation is just blood and urine tests to monitor her numbers while they wait for her new stemmies to take hold & build her new immune system.   The posts may not be so often now, as there isn’t much to report.

A new birthday

Time to catch up from the last few days.  A lot has happened, and I just haven’t had a chance to update yet.

Monday (5/5) is mom’s stem cell “birthday.”  She got her stem cells back.  It was an eventful and emotional day.  Things didn’t go as smoothly as expected, and for me it was quite scary – I won’t lie.  The very skilled team comes in like a tornado and are gone just as quickly.  They came in and hooked mom up to IVs while they were performing Patti’s transplantation.  Then it was mom’s turn.  I got put back in the corner and somehow Dad got kicked out.  They brought in her stemmies, warm them up a bit – and it’s off to the races.  Once the stem cells are warmed they only have about 5 minutes to get them into you before they begin to die.  One nurse is taking the stemmies out of the bag into syringes while another is inserting her stemmies through the octopus into her body (all the while Dr F is monitoring her and communicating with everyone.

Getting stemmies into syringe

Getting stemmies into syringe

Inserting stemmies into octopus

Inserting stemmies into octopus

There was a complication.  Her blood pressure plummeted, and she started to pass out.  She told the doc, “I’m just going to sleep.” He began shaking her arm, and yelling “wake up Diana.” She then got a shot in the arm & another in her octopus to bring up her blood pressure.  Once they were done with that bag, they gave her a short rest while her BP came up, then started the second bag.  It was the same thing, and I will tell you I was panicking.  Then it was all done, and they run out of the room.  Doc must have seen my face, because he told me – you are worried, don’t worry.  It is fine. He told me that BP complication was due to the chemical used to freeze stem cells.  It reacts in a certain percentage of patients.  I will say, they were prepared for it & handled it.

After they cleared out seconds after transplant, dad and I sat staring at mom and the machine monitoring her BP.  She was totally out of it, and couldn’t keep her eyes open, and freezing cold.  Well her BP kept going up, and up, and up.  Then the machine started dinging – I might have panicked (yet again).  I rang the buzzer, nobody came running so I went into the hall searching for someone.  They came, gave her a pill and a few shots of something in her octopus.  It eventually normalized.  It wasn’t easy, and was quite scary.  They unhooked her machines shortly after transplant and away they went. I would have felt better keeping her hooked to the vitals machine the rest of the night, to be honest.  After complications of such extremes both ways a little extra monitoring would be nice.

Then it was time for the tradition of throwing away the the excess (I think dry ice type stuff) they use to freeze the stemmies.  It signifies throwing out the bad, and beginning a new life with your new immune system.  Doc F was so excited, and it was nice.

Then it was back to bed for mom, while dad and I kept watch.  She was totally out of it.  We got her up and had her eat something before we had to go for the evening.  It wasn’t easy to leave that night, especially for Dad since it was his last day here.  Jon and him (my bodyguards) were switching the next morning.

Out with the old, in with the new

Out with the old, in with the new

Happy anniversary

The past 4 days have been filled with bottles, bottles, & more bottles… of fluids. Mom starts the day off with 7 bottles of stuff ( this is the chemo).  It generally takes about 5 hours to get through all that.  Whew… That means a lot of trips to the potty! ( For any future HSCTers – hoard some toilet paper! It is like gold.  Dad & I bought some, because when we asked for it they brought napkins & said Russian holiday! What?! Lol) Then, around 5pm, she gets two more bottles of fluid (steroids).  Around 9pm, she gets two more bottles of an anti-viral.  This is supplemented by a handful of pills 3 times a day.  She is doing quite well, considering.  She is exhausted, and is a little glassy eyed & fuzzy for a bit after the morning infusion.  But overall, she is doing well & still in good spirits.

In the midst of all these fluid-filled days is a Russian holiday, as well as mom & dad’s 38th  wedding anniversary on May 1st.   Dad did a little card shopping in Moscow, and got mom a very beautiful card – with lots of writing inside. He wrote in it, “I don’t know what this means, but it’s the thought that counts.”  Well it made mom’s day, and they got to spend the whole day together trapped in a hospital room (with me, too :) ).   Next year, maybe they will be able to do something a lot more fun, but at least they were together.

Speaking of Dad his allergies have been killing him.  I mean it is just non-stop.  The good daughter that I am, googled Zyrtec in Russian & we stopped at the Anteka  (pharmacy).  So he tried Zyrtec, Claritin, and a generic allergy med too.  Nothing has been working.  Well, Dr F is a wonderful man, and noticed.  He said he would fix it.  So in comes a nurse, off Dad goes to another room for a shot in the butt of allergy medicine! Haha he came back holding his a$$ & we all got a good laugh!

Tomorrow is a day of rest for Mom, and Monday she is getting her stem cells back! Yayyy! We will never forget her second birthday :)

image

Let’s get it started!!

Yesterday Mom got the next neck catheter inserted.  This one is smaller, and used for chemo & to get her stem cells back.  It is in the same spot as the last one, but this one went much smoother.  She had a wonderful red-haired nurse (for the life of me I can’t remember her name) who held her hand and rubbed her shoulder while they inserted it.  How sweet! It is nice to finally get started after a 3 day break! :)

Smaller "octopus" aka neck catheter

Smaller “octopus” aka neck catheter

Today, she started her first of four days of chemo.  She is doing well so far. She also started a new regimen of meds today.  The box is clearly marked morning, midday, and evening in Russian & English. How did we miss that all this time ;) hehe duhhhh

She is in good spirits, and doing well.  Dad and I have been regaling mom with stories of tram rides, and adventures trying to order dinner.  I have mastered the point, and smile emphatically at the server (for both Dad and myself)! Lol sometimes we luck into a place that has an English menu (even if they only have 1 it is a relief). Dad entertains mom and myself with flushing the leftover food down the toilet. I think it blows our mind, because we can’t put ANYTHING down the toilet at home.  (Trust me, we are supposed to do it).

image I will update again tomorrow on how chemo is going.

Yay stemmies!!

image

Sorry this post is a little late – but day 2 of stem cell collection was a success.  Mom got all the little stemmies she needed! It was two long days of laying still, and not being able to get up even to use the bathroom – but totally worth it! It isn’t painful.  I asked mom to explain what it felt like, just to give you an idea.  There is just the occasional lips quivering and getting numb, just a few odd sensations once in awhile, and hands going numb from time to time.  The worst part is worrying about having to use the restroom! Two successful days gave mom all the stem cells she will need, and got to have her neck catheter removed by a very skilled nurse.  Woohoo, now she has a cute vampire bite ;)

She will have a few days rest, then have the new neck catheter (smaller one for chemo) placed (prob. On Tuesday) then begin chemo (Wednesday, we think).  Moving right along, and doing our part by 110% believing this will knock out her MS!

It’s all about the stemmies

 

 

Today was day 1 of stem cell collection.  It was a much better day than yesterday! About 5 hours hooked up to the apheresis machine, followed by the steroid infusion ( thankfully just put through the octopus now).   It was a long, exhausting process but it went well.  Mom will have to complete this process again tomorrow as not enough were collected today.  She needs between 1.5-2.0, she is a little disappointed that she got .71 today.  We are determined to get the rest of those stemmies out tomorrow :) Instead of putting our big girl panties on, maybe we need to put our superhero panties on. Lol

All smiles collecting stem cells

She is doing well.  Exhausted from not sleeping, but that is a result of the steroid, probably combined with the time difference as well. Well, let’s be honest her not sleeping is nothing new.  Still representing PSU with her blanket even in Moscow :)  As you can see, smiles all around this morning.

Praying for lots of stemmies tomorrow :)

Hear me roar

Hear me roar

Mom’s theme song for the trip is Katy Perry’s hear me roar.  I will tell you she is definitely a champion.  It has not been an easy couple days, but she is one tough cookie.  Yesterday it was very hot and the heat exacerbates the MS symptoms, and makes her swell a lot.  Thankfully last night they came in and turned off the heat for her.

She got the neck catheter (octopus) inserted today, and finished up her last day of solumdrol & stimulation shots.  She is a hell of a woman, I will tell you that.  The octopus looks pretty intimidating and is not comfortable at all.  Mom has a herniated disk in her neck, and it made it even more painful.  I asked the nurses for pain meds for her, they told me 5 minutes but never showed up.  Mom wouldn’t let me ask again, she didn’t really want to take it anyway and said it must be a sign she shouldn’t take any pain meds.  What a woman! I tied a scarf around her neck to keep it tight to her neck and not pulling as much since it is quite heavy.

Tomorrow morning at 8:30am they will be performing Apheresis (Collection of Stem Cells).  Apheresis is normally a painless procedure, however, back and hip pain have been reported. The collection of stem cells takes approximately two to five hours for the procedure. Her blood will be withdrawn through a catheter (the octopus) and circulated through a cell-separating machine. This machine separates and collects white blood cells, including the stem cells, along with a few red blood cells and platelets. The remaining blood cells will be returned to her body. There is only a small amount (several cups) of your blood in the separator machine at any one time. Your blood is returned to you at the same rate it is removed. After the cells are collected, they are frozen and stored under special conditions until they are needed for my transplant.  So tomorrow will be a long day.  It will be around five hours of not being able to move, while her blood is circulated 2 – 2.5 times.  Keep her in your prayers, and we hope she can get all the stemmies in one collection (approx. 2 million).  If they don’t get them all tomorrow, there will be another collection on Friday.

Funny story to end, the “sisters” we’re going for their eye exams last week together, as with all their tests.  The lady doing the exams could not believe they were sisters! She kept asking if they had different parents!!!! Haha apparently salt and pepper really threw her off, because she didn’t think they looked alike at all.

Cheering on those stemmies!!! Grow, grow, grow! Fingers crossed for a one day collection!

The dreaded "octopus" - still smiling though

The dreaded “octopus” – still smiling though

 

 

 

Movin’ on up

Moving on up… To the 3rd floor. Yay! That just means we are progressing in treatment.  Since Sunday Mom has been taking a pill at 8am & 7pm to protect the gastro-intestinal system during treatment.  At 11am, she receives an IV of solumdrol (steroid). Then, at 11pm & 3am she gets a shot to stimulate the growth of her stem cells.

She will continue this through Wednesday. On Wednesday they will also be inserting the neck catheter (the octopus- as it’s been nicknamed) to collect stem cells through on Thursday and Friday. Pray that we only need 1 day for the stemmies to be collected. She will need approximately 2 million stemmies. On Saturday, she will start chemo and there will be 4 days of that.

There was a bit of confusion due to the pills when we moved up to the 3rd floor.  Downstairs they came by with a pill at the time she was to take it. Up here, they left a pill box but never said anything. It had Patti’s room number, but as the nurse pointed out it had mom’s name in Russian.  It is also soooo hot in the rooms, which isn’t good for someone with MS, but Dr F turned it down for us.

There is a huge step to get into the shower, which makes it very difficult for Mom. Dr F got her a step stool to see if that helps. Dad & I got yelled at today because we weren’t properly “dressed.”  Dr F to the rescue again (I swear he just shows up when you need him). We have to wear gowns, booties, I have to wear a hairnet ( dad got out of this since he is a baldie).

More updates on Mom soon :)

 

Happy Good Friday!

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!!

Russian tales, part 2

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 ;)

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