We're Going Home!!!

Today, I'm at a loss words.  I feel like jumping, screaming, crying, all because we are going home!  

This journey to healing has been hard.  It has tested me in so many ways.  Would I do it again to get rid of CIDP, in a heartbeat.  

This morning at the hotel, a fellow CIDPer & HSCTer, came up to Jesse and I and introduced himself.  He told us he'd been following the blog and when he recognized me this morning, he couldn't help but watch me walk.  The ease I had.  The confidence in the next step.  When CIDP is a part of your life, you never know if your next step is going to keep you up or send you tumbling to the floor...there is no trust in your legs, there is no trust in your body.  This gentlemen told us his story and how he starts mobilization tomorrow. :)  

HSCT & Dr. Burt are giving people their lives back.  We are getting second chances.  It is also bringing a community of complete strangers together in crazy ways.  We are able to encourage each other and help the next person be healed from this disease.

As we headed home, I was thinking of the team at NorthWestern.  They are constantly going.  The stream of patients is never ending as they heal us one at a time.  Thank you Dr. Burt.  Thank you team.  We are forever thankful.

Now I sit in the quiet and safety of my home.  I hear the birds chirping, the wind rustling the leaves, I feel the cool breeze on my head and I am thankful.  

And so continues my journey to healing...my journey to living again. :)

What's Next?

This question keeps popping up so I thought I'd do one post just about that, what's next.

Recovery takes a full year.  The body must rebuild immunity to everything.  I won't be going anywhere public for several months.  The longer I can stay in and healthy, the more we will be able to prevent sickness.  If you are sick or if you've been around anyone sick, then it's best to stay away.  

If you are invited to our home in the next year, certain precautions will have to be taken.  

-if you've been around anyone sick, we need to know (preferably before you come, so we can determine if we need to reschedule).

-come your cleanest!  Showered, clean clothes, etc.

-shoes will be left at the front door, in the closet to prevent tracking anything into the house.

-no flowers or new plants can come into our home for a full year.

-no animals can come into our home for a full year.

I will be avoiding large crowds as much as possible.  When we fly home on Sunday, I'll be wearing a mask and gloves to prevent exposure to anything.

I will be starting PT over the next few weeks to help me get my strength back.  My time in the hospital had me in bed almost everyday, so I lost a lot of muscle mass.  

Things that I was told to expect over the next year:

-exhaustion-as my immune system tries to come back on line, it takes a lot of energy.

-pain-the nerves that were damaged during my years with CIDP are still there. The disease has been stopped but damage has been done and as the nerves regenerate, pain will accompany.

-I will be taking anti viral and anti biotics over the next year to prevent infection.

-IVIG-that is officially over!  No more IVIG!!!

Things I've already gained back:

-I can feel my fingers and fingertips. I can feel soft, smooth, hard, bumpy...etc.  Prior to HSCT, I couldn't feel anything, I could sense pressure but no feeling.

-the electrifying, pins and needles, burning pain I had in my legs, is gone!

-muscle cramps that I used to get throughout my entire body, are gone!

-eye spasms that would last for days at a time, are gone!

-muscle weakness that prevented me from walking any sort of distance or up and down stairs, is getting better but will take time.

This year is going to have ups and downs.  I'm sure there will be some visits to the ER for me since we can only do so much to protect me from germs.  But, we will get through it.  This time next year, my immune system will be back on full swing, my CIDP will still be gone, and I'll be ready to take on what's next.  

Excited is an understatement! :)

Day +9

Last night was strange.  We've been in here for over 2 weeks.  During that time, the noise has been constant.  The pumps going all the time, beeping, vitals being taken every 4 hours, middle of the night blood draws, non stop questions...last night, it all stopped.  It was quiet in our room from 9:30 - 2:00. One final lab draw, then back to sleep we went.

Upon waking up this morning, I checked my "score card".  White Blood Cells = 4.2!!!!!

We are getting outta here!!!  We met with Dr. Burt and the team this morning.  Grinning from ear to ear, I got a photo with the team (minus Kaitlyn), that has given me my life back.

Once they left, we started packing and Jesse had begun the journey to get all of our stuff back to the hotel.

While he was doing that, I was having my PICC line removed.  

This thing has been in my body for the past 2 1/2 weeks.  All of my medicine came in that tiny little tube.  I'm still in shock.  Grateful and in shock. 

Now, I am laying on our king size bed at the hotel...realizing how good it feels to lay on something soft and comfortable.

I will always be thankful for my hospital room #1665...it is where we were given new life, new hope, a new lease at life.

Day +8

Painful is an understatement.  In the evening of Day +7, my bone pain reached new levels...my body felt like I was giving birth to a third child.

We tried to get the pain controlled with the norco.  It didn't even kind of help.  I asked for something stronger as I was sobbing and shaking from the pain.  Dilaudid was ordered for every 6 hours.  This worked great for the first 2 hours, but my pain was so severe. I was burning through the pain meds faster than they were prescribed.

Finally, around 1:30 AM, we broke through.  The Dr.'s increased the dilaudid to every 2 hours on top of of my norco every 6.  The pain was finally manageable again.  

Yesterday, that's all I did, pain meds, and laid as still as possible.  Any movement, sent the bone pain back up into unmanageable categories.  

One bad side effect of pain meds and I, I get extremely nauseous.  Yesterday, I ate nothing, threw up what I had eaten for dinner the night before.  Thankfully, by dinner time, I was able to get down some fries (potatoes, still my go to food when I feel like crap). :)

Mary has been my nurse most evenings. She's been wonderful and I'm so greatful for her.  She's helped me through the worst days here.

There was some amazing news yesterday! All that pain was paying off.  My immune system came back on line!!!!!  My white blood cell count went from .03 in the morning, to 1.9 by the afternoon!  

We would have gone to the hotel last night except I was still taking the IV pain meds and needed to be weaned off of them.  We stayed so I could do that and not be in fear of the horrible pain returning.

Day +7

Last night was pretty uneventful (considering the previous weeks).  My body is still adjusting and so I'm sweating like crazy...kind of gross, but it's keeping my temperature in check.

Today, I woke up and felt good.  Had a donut and some coffee.

Thank you Dunkin Donuts for being right in the hospital!

Around 10:00 AM, I started my first of two units of blood.  My hemoglobin was 8.1, when it goes below 8.0, blood is given.  So as they say, "we are giving it all she's got" (Star Trek reference for the fans).

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Kid Update:

For those of you on the fence about HSCT because you're concerned about how it will negatively impact your kids, this is for you.

I too was scared.  I too was afraid of what my long term absence would do to them.  I realize that not everyone has the same support going into this like I have.  My family has literally been amazing and I know that I am blessed.

Here is what I've learned.  Children are resilient.  If they know they are loved and cared for, their worries are small.  

I talked to my mom last night.  She told me that the day before, she saw our oldest, he's 4, sitting on the floor of his room (at their house) holding our photo.  She went in picked him up, sat with him and they talked.  He said, "I miss mommy." He continued that he really missed me and wanted me to come home.  She reminded him that she missed me too, and that it was just 7 more sleeps and then we would all be home again.  This was the first time he's expressed any feelings about missing me.  

A few things to note:

-he's 4, and is expressing his emotions!  That's huge!!!  He can name them and say how he's feeling (proud momma over here).  

-difficult times, circumstances or situations don't break kids, it makes them stronger.  They are able to process and handle hard situations as they grow because they've already learned that even though it's hard, it will eventually get better.

-if they know they are loved, no matter what they do or say to try press your buttons (and trust me, our oldest pushes), they are confident that what you say is true...they are loved.

As much as it breaks my heart that my absence is hurting his little heart, I'm also incredibly proud of him.  His emotional growth excites me!

Our 1 year old, he's also doing great.  We decided early on, that he was going to stay with my parents the entire time so that he could attach and bond with them like he does with us.  He has security and familiarity in knowing that my parents will be there everyday.  

I keep getting told how strong I am, but my kids are strong.  They are fighters too.  I'm not the only one who has beat CIDP, my entire family has!

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On with the day...

Kaitlyn went over discharge instructions with us this afternoon!  No, I'm not out of lockup yet, but she said it's either tomorrow or Friday!!!  SO EXCITED!!!!!

On the discharge paperwork, there is a section that says current medications.  It listed everything I've been on for IVIG.  The best part, next to IVIG, it said DISCONTINUE!!!  That's right!  

NO.

MORE.

IVIG!!!!!!!!!!!!!!!!!!!!!!

Soon after this wonderful news, my bone pain started.  For those who don't know what this feels like, there are few similar pains I can relate it to.  

Pain 1: back labor, like the baby is coming and you've been in labor for 12+ hours already.  

Pain 2: kidney punch or injury, if you've ever fallen on your kidney, bruised your kidney etc., imagine this and then imagine someone repeatedly punching you.

Pain 3: growing pains. If ever as a child you experienced growing pains, this is that feeling times 20.

This, this is my face on bone pain:

Any questions?

The nurse was called, more pain meds were given, heating packs were put on.

Despite the horribleness of this pain, this is amazing news!  It means my stem cells are in the engraftment phase.  They are moving back into my bone marrow.  Once this process starts, discharge is on the horizon!  

While we were waiting for the pain meds to work, Jesse rubbed my neck and said, "Rachelle, you birthed two babies!  I know it hurts, but you can handle this!"  He was right.  It hurts.  And I can handle it.  

Now we anticipate my blood draw tonight and what my numbers say in the morning!  Numbers are how I make a living...I've never been so excited for a set of numbers in all my life!

Day +6

Fever. This thing. Didn't want to give up.  Even yesterday, with Tylenol and solumedrol, I climbed up to the 100's.  At bedtime, I was down to 99 again.  Then through the night, I noticed I was sweating (A LOT), so at 4:00 when my pump started beeping, I asked the nurse to check my temp.  It was back down to my cool and comfy 97.8!!!  My fever had broken and my body was getting rid of all the junk!  I (we) did not sleep last night, but if the fever is gone, the sleepless night was worth something.

Today, my platelet count was low (15) and I received a bag that some kind, healthy, stranger donated.  My platelet count went up to 39!  

This has been an emotional part of my disease for the past 4 years.  In order for me to have been able to survive, 100,000's of individuals had to donate plasma so my IVIG could be made.  

While here, I've already received a bag of blood that rescued me and today I receivied a bag of platelets.  This is yet another debt, I will never be able to repay or participate in.  You see, once you receive any blood products like plasma, blood or platelets, you are not permitted to donate.  So I urge you healthy friends, if you can, find the time, donate.  It may not be your blood that saved me, but you're filling up the reserve as if it did.

Dr. Burt and the team came in around 8:45 this morning.  I've been on round the clock fluids and anti nausea meds since I can remember.  Today, I got to come off it all!!!  My last dose of anti nausea meds was yesterday afternoon!  My scopolamine patch came off yesterday too (I have had one on since day -6).  Slowly but surely, the drugs are starting to be tapered away.  

This morning, I got to sit by the window, feel the sun on my skin, and enjoy this beautiful view of the lake.

This evening, history was made at Prentice as us fellow transplant warriors met outside our units, by the elevators, for a group photo!  We asked Dr. Burt this morning if we could, he smiled and said yes!  It was so great!  

We've all been together through pretesting, mobilization, transplant, and all the ups and downs in between.  For us girls, we've been chatting for months about our concerns, the heartaches of leaving the babies, encouraging and listening as we each processed what was about to take place.  These women, are forever linked to me and I to them.  We are HSCT sisters.  We are warriors.  We are new women, wives and mothers...preparing and anticipating each day to go home to our families so we can start living our new lives!

Dinner tonight was so good.  Cheesecake Factory Bang Bang Chicken and Shrimp.  

Thankful, so very thankful.  

A new chance at life.  

The old is gone, the new, has FINALLY COME!!!

Day +5

Yesterday, was by far the worst day.  We had tried everything to get me feeling well, nothing seemed to be working (hydration, blood, ice packs all over, anti virals, antibiotics...). The fever kept climbing.  Around 8 last night, my fever spiked to over 103.  I was shivering and crying, the pain was extreme.  Dr. Burt was paged. He called within 2 minutes (that's how awesome he is).  He told the nurse to give me 120 of Solumedrol (a steroid).  Once that started, relief was soon behind and I was able to get my temp down to the 99 range.

On this mornings rounds, Dr. Burt told me that for lots of CIDP patients, the fevers come as the bodies last ditch effort to hold onto the CIDP.  The CIDP is gone, (happy dance), but the rest of my body is still figuring that out.  To prevent anymore possibilities of fever, I'll be given Solumedrol tonight and tomorrow night.

He also told me the blood cultures they've been taking, almost every day, have all come back negative.  So I have no sign of infection anywhere.

My goals for today were simple: eat, shower and walk.  Being bed ridden for the past several days, I was antsy to get up and use my "new" legs.  So I met with some of my HSCT sisters in the hall.

Yesterday, we also started the neupogen shots (these are the same shots I had during mobilization that got my stem cells from my bone marrow to my blood).  These shots do cause some pretty severe bone pain.  These shots are given to help my white blood cell counts to come back faster.  Science is AMAZING!!!

Thank you everyone for the prayers last night.  It was scary and not at the same time.  Jesse wasn't worried, so that helped me stay calm.  

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Today was a great day!  Childhood friends (who are life long friends) drove 3 hours to visit with us.  A friendship that I love where we can pick up right where we left off every time.  So we chatted and caught each other up on our lives.

Another pleasantry of the day, a gift from one of my HSCT, CIDP mentors Stacey.  Thank you so much!!!

We are in our final week here in Chicago. Our flights home are booked for next Monday.  We are down to 7 days, 7 DAYS, until we hold our boys again!  We are in the home stretch.  

I'm feeling good, tired, but it's a good tired instead of the constant fatigue I experienced with CIDP.  

The Benadryl still makes me sleep. 

I'm continuously thankful that I was given this opportunity to be well.  To get my life back!  

Day +4

Worst day yet.

Fever reached over 103.

Ice packs were used.

Blood was given.

Now steroids to help fight the fever.

Been in bed all day.

Praying tomorrow is better.

Day +3

We had an early morning.  Dr. Burt had some Dr's. visiting from Europe to check out HSCT.  It was 6:00 AM, I was groggy, and the people just kept coming!  I saw Dr. Burt and my nurse Kaitlyn, everyone else was a blur of dark suits.  These Dr.'s are hoping to start doing HSCT in their countries too!  More people to bring this life giving and saving treatment!!!

As quick as they came, they left, and we went back to sleep.  My nurses let us sleep until 10!!!  We were so thankful and really needed the extra rest.  

I have no appetite for anything on the hospital menu.  I look at it, and I get nauseas.  

Around 12, I noticed I was really warm.  I called the nurse in and sure enough, I had a 101.4 fever.  Blood was drawn and medicine has been taken.  A fever with this new immune system, feels way worse than any fever I can ever remember before.  My energy is gone, no appetite, no desire to do anything but lay down.  I've been fighting a low grade fever all day.  The nurses aren't super concerned as this is a normal part of the engraftment process.  My body is working super hard to get back to normal.

I've been in bed all day.  Resting is helping a lot.

A confession: I haven't really cried or been upset at any point of this transplant trip.  I truly felt prepared coming into this from the veterans who went before me.  My monthly infusions also prepared me.  Being sick for a week and having to send the boys to our parents, helped my heart prepare for leaving them for these 3 weeks.  But for a moment tonight, I lost it.

Jesse and I were watching Deep Impact. If you've not seen it, spoiler alert, it was at the part in the movie where the asteroid was coming, the mother gives her daughter the baby and tells her to go with her new husband on the motorcycle up the mountain.  That feeling, that's how I've felt every trip out here.  Saying goodbye to my boys is the hardest thing about this.  You'd think the physical pain, nausea would be it, it's not.

At the same time, I haven't been worried about our boys at all!  Our parents have been taking care of them.  I literally have no worries.  I just miss them.

Everyday, we are closer and closer to home, closer to hugs and cuddles, closer to figuring out our "new" normal without IVIG treatments and red weeks.

Even though today has been hard, it's ok, tomorrow is a new day.

Day +2

I feel good!!!  It's a beautiful day!!!

Last night, after my 2:00 AM vitals, I realized my legs aren't burning, on fire, restless, cramping....etc.  I can feel the CIDP gone.  It's so strange.  A feeling that I've grown so used to, a feeling that constantly reminded me that I could only take so many steps in a day, a feeling that hurt and ached and always had my attention...

IT'S GONE!!!

HSCT veterans told me it could happen, I didn't want to get my hopes up though and have remained pessimistic.  Now I am optimistic!

My recovery is still far from over and I'll still have bad days and will likely get those shooting, burning pains every now and then as my nerves try to repair.  

Today, I was able to get up, shower, and go for a walk around the floor.  First time walking in over a week.  I started with one lap as I didn't want to push myself too hard right out of the gate.  A fellow HSCTer walked with me. :). There's a group of us here that have been pretty much together for the past 3 months (pretesting, mobilization, transplant).  It's been so encouraging having others going through the exact same thing.  They literally have felt what I've felt during the chemo, the needles, the bone pain, the nausea...etc.  These women and men, are my warriors.  We are forever linked.

My Physical Therapist came by to see how I was doing.  We went on a 5 lap walk around the floor!  My gait looks great, my speed was good too.  Slowly building back the muscle I lost last week in bed.  

I am taking IV anti viral and anti bacterial meds every day to prevent anything.  We figured out I'm allergic to it.  Last night when they gave it, my head itched so badly.  Today, the same thing happened. So, we will pretreat with Benadryl tonight, which just means extra sleep for me.

I started a new game today, medicine cup basketball.  So far I'm 3 for 3. :)

Tonight, I've had a low grade fever (99.1) so I feel a little crummy.  This is a good reminder of how this next year will be.  Any little cold, fever, cough, is going to take me out.  I've been so used to having an immune system of steal, getting used to this baby immune system is going to be a crazy ride.

And to end the day with a little joy, these are my socks with slip grip traction.  Comfy and cute.

Day +1

I woke up this morning feeling like death.  It felt a lot like the flu times 100.  My resting heart rate was 130, my blood pressure was up and down, I was extremely dizzy, I had a fever, I am officially neutropenic (my numbers are too low to count).  Dr. Burt and the team came in to check on me, he told me to stay in bed today and rest.  

So that's what I did most of the day.  Slept on and off, was in and out of consciousness.

The transplant part is officially over.  I had my last bag of Rituxan today!  CIDP patients have more chemo than other AI diseases.  Our immune systems are super strong and take a little bit more to knock out the bad/confused parts.

Now we wait.  It usually takes 8 days for white blood cell counts to start climbing again.  Over the next few days I could need a blood transfusion or platelets.  Each day, I will get stronger and stronger.  My legs that once always burned and ached and felt like electricity, are beginning to feel calm once again.  A miracle is all I can say, this is a miracle.

By no means are we in the clear.  I have a year of rebuilding that will be challenging in new and different ways.  

We are excited to start dreaming again! 

Fireworks

This morning (yesterday), Rachelle was reintroduced to her stem cells. The process was very quick. A tiny bag resembling an individually wrapped frozen chicken breast was pulled out of a cooler filled with dry ice. 

The nurse massaged the bag in warm water. 

Another nurse confirmed that Rachelle’s name was on the bag and hooked it up to an IV pump. 

Less than an hour later, Rachelle began day zero, her new birthday.

The last few years have felt like a dark, slow, downhill fall. I had forgotten how much it hurt to be slowly losing my wife. The disease progressed at such a dragging pace that we just gradually got used to the new normal of lack of energy and increasing pain.

It was too much for me to watch her suffer and struggle. So, most of the time, I simply had to turn off my feelings. I didn’t even realize I had done it. When people ask me how we're doing I half-jokingly respond: “not dead yet”. It’s kind of funny (if you get the Monty Python reference) but it’s not very aspirational. If someone probes a little further, I say: “It could be worse”. Truth be told, I was having trouble imagining how.

But today I felt excited: eight-year-old, got-what-I-wanted-for-Christmas excited. I haven’t felt excited, even happy, in such a long time. This treatment means enjoyment and fun are possible. It means time and energy to have great days with our children. It means we get to shift gears from "survive" to "thrive"!

Thank you. Thank you! For giving, praying, researching, listening, babysitting, cooking, believing. We are so incredibly blessed to have such a swarm of supportive friends and family. I just can’t imagine making it to this day without you!

On Wednesday nights, in Chicago, there are fireworks over Lake Michigan. Rachelle and I sat at the hospital room window and watched them light up the city and felt them boom in our chests. Tonight, they celebrated for us! The journey is uphill now! We’re no longer falling! Now, we climb, stronger and more hopeful by the day!

Day 0 - The End of the Beginning

June 17th, 2015 at 10:00 AM

Four years of losing feeling, numbness, tingling, energy, muscles not working, cramps, Dr. appointments, MRI's, EMG's, NCV's, Steroids, IVIG, Zofran, Migraines, vomiting, diarrhea, constipation, Aseptic Menengitis, all the tears, missed memories with friends and family, pain, needle sticks, blood pressures, temperatures, life revolving around a 4 week window...the red weeks.  One entire year lost!

I had no idea that it was the beginning of the end when I started researching HSCT.  All I knew at the time, I had to keep pursuing an answer until a door got slammed in my face.  An email, an evalution form,  a very large packet of paperwork sent to Paula, a trip to Chicago to meet Dr. Burt, many more tests.  Friends and family supporting us financially, physically, emotionally, the doors kept opening.  

These many years of struggle (emotionally, spiritually, physically, mentally and financially) have all come to this, this moment.  TODAY!!!!  A new chance at life with the love of my life and my boys.  

There have been some very dark moments.  Times when I thought I wouldn't be able to make it back to me again.  Times when it would have been easier to give up.

Every. Single.Time.  I made it back.  

Every time, God gave me the strength to keep breathing, to keep pushing through the pain, to keep pushing through the sorrow and the tears.

People often tell me, "you are so strong", I think that when we are faced with what seems to be insurmountable circumstances, we are given a choice, cave into the circumstances and wallow there, or, visit, for as long as you need to.  Feel the grief, feel the sadness but then, get back to living what life you can while you can.  

I have been given a second chance at life!  I will not take it for granted.  Just as I said in my wedding vows almost 10 years ago, "I will strive every day to find a new way to love you as the gift I've been given."  Jesse, we have stood by each other through thick and thin (lots of thin moments). ;)  

Here's to another 40 or more of "whatever the weather, we will always be together."

GOODBYE RED WEEKS!!!!

http://youtu.be/mxTq3tz1yeY

Day -1

Exciting News!

Prior to going to bed last night, I noticed something new.  I could feel the tips of my fingers!  Not fully, but more than I have in years!!!  Amazing is all I have to say, absolutely amazing.  The softness of my favorite blanket from home, the smoothness on my phone screen, the roughness of my water cup, the softness of Jesse's hair, I could feel it!!!  I can't wait to touch my boys sweet faces in two weeks and really feel their faces for the first time!

2:30 AM - woke up with horrible cramps. Called the nurse for some pain medicine. While awake we did my blood draw for the day.  Morning will tell where my levels are.  

3:30 AM - nausea started again. My nurse, Sophie, gave me a tums and another dose of Ativan.  I love Ativan, it's my favorite anti nausea med.  Sleep is coming again now. 

Nope. Tossed and turned, I'm guessing the 1,000 mg of prednisone I've had are finally kicking in.  

Medicines that stop today:

Mesna (finishing right now)

Lasix (taking it right now)

rATG with Benadryl (one more dose)

Poor Jesse, so tired.  If I'm up, he's up.  So he's gonna need some liquid gold (coffee) stat.

7:30 - Blood Tests are back.  My numbers are dropping like they're supposed to.

8:30 - "Tushy Tuesday" they have to do a swab on my tushy to make sure I don't carry a certain bacteria.  So far, I'm not a carrier.  :)

Ate some breakfast.  Only a half bagel would do. Then was lots of pills.  

I wound up getting sick and needed some anti nausea meds very quickly. Then it was time to pre-treat the rATG with Benadryl.  So I missed lunch (which is fine when you aren't keeping food down).

1:00 - rATG was started! The last one!!!

I woke up around 3:30, hungry!  Ate some moo goo gai pain.

Jesse went and got me a very sought after chocolate milkshake!  And then a chicken sandwich from Au Bon Pain.  Evenings are when I keep food down. So I have to eat what I can. :)

Our fundraising campaign is being featured on HelpHOPELive's website!  Spreading the word about HSCT!!!

Tomorrow at 10:00, I get my stem cells back!!!  :). System Reboot is in full effect. 

Texts for the day:

About our son David

"I know. It's been a tough season no doubt but I see it making him a better big kid! And you're doing just what you need to to take care of him. He may not get it now but someday he'll know just what a superhero his mom is!"

"Always remember that your present situation, is not your final destination.  The best is yet to come."