Day 10 & 11 Praying to Heaven

I wish I could tell you Nick is doing just great, but the last two days have been his most difficult to date.  I'm in the room all day, helping however I can and acting as Nick's voice now, but it seems so inadequate and I can't keep from feeling completely helpless.  I find myself begging in prayer as I watch him struggle because this just isn't right.  It simply isn't acceptable to me as I watch a man of such integrity and strength, suffer in such a way.
The mucositis (ulcers) affecting his mouth and throat are causing terrible pain.  He has stopped talking completely now and barely takes a sip of water.  IV pain meds are helping the pain, but unfortunately these meds also make it difficult to feel alert when he's trying to shower, read, or walk the halls. The mucositis is expected to "get better" by the end of the week.  Friday can't come soon enough.
It's a crucial time right now, as Nick's counts have just about hit rock bottom.  This is Day 11 WBC .30, Hgb 6.9 (so he had another transfusion today), and Platelets 14.  Once they are as low as they can go, we want to see the counts climb back up.  That's how we'll know that the transplant was successful and grafting is taking place. So...

All I can ask is that you join me
In sending a prayer, perhaps take a knee.
For with every voice heard
Every wish - every call,
God will protect us, He won't let us fall.

Day 8 & 9

Just as they have Nick's stomach issues under control, in comes mucositis.  This is the time where - thanks to the chemotherapy (FluBu) prior to transplant - Nick's body begins taking the brunt of the effects.  Mucositis is a painful inflammation and ulceration of the mouth/throat/digestive tract.
Today, speaking and eating are difficult.  He is given pain meds to help him through it, which also knocks him out.  Following an afternoon nap and 11 laps (1 mile) walking the Unit, he's reading the newspaper in the recliner in the room while the nurse administers additional "fluids" per the doc.  Because mucositis makes it difficult to eat and drink, these fluids will keep him properly hydrated.  I really feel for him today and only wish there was something I could do to take away the pain.  Instead, I tidy up, make runs for ice water, do the laundry, then simply stay close and quiet so he doesn't feel the need to speak.  The mucositis is expected to last at least a week.  We certainly don't want it to become any worse, so please...(insert prayers here).
Know that although it's getting rough, Nick still finds a way to muster up a smile.

Day 6 & 7

If you ever wanted to see what bravery and strength look like, just take a look at Nick.  He's holding up well, especially considering the amount of chemo and other meds they've put into him.  He's still in a battle with stomach issues, but handling it like a champ.  His Hgb dropped below 7.0, so he had a blood transfusion yesterday and another one today, which now puts him in the BMT acceptable zone.
Nick's WBC continues to drop and is expected to "bottom out" in the next week.  This is a critical time because he is now extremely susceptible to infection. We're taking all the precautions we possibly can and have asked Moffitt to help us limit the people coming into the room.  He's dealing with a couple of other issues - sore mouth/throat and a rash on his chest and back - but he keeps the staff notified and takes whatever they can offer to keep him comfortable for now.  He did get a little behind in the required liquids, but IV fluids got him back on board.  He's eating, but not as much as he was.  Today he skipped lunch because he just "wasn't hungry".  Appetite will become more and more scarce, but he knows he'll need to eat anyway.  Walking is also "key" in this fight back to restored health, so he is walking laps as much as he can.  I believe we did 2 miles (or 22 laps) yesterday and the same today.  You should see the faces of the staff when he walks by (with his IV tower in tow) and asks, "Do you guys need anything?" as if he's just walking the restaurant dining room, checking in on his guests.
Nick did have a short visit with "Coach Nick".  He calls him "Coach" because he's about 30 days ahead of our Nick in the BMT process and he's been sharing his experience along the way.  Nick has learned a great deal from him.  He first met Coach Nick at Moffitt months ago while waiting for a doctor's appointment.  Can't say I'm surprised that our Nick made a lifelong friend after a five minute chat in the waiting area.  It seems he has the ability to draw you in, then you're close enough to feel the genuine spirit in his words, and ultimately find you're simply unable to walk by him again without sharing a smile.  Here are a couple of pics as they polish off a few laps...

  

Just as a reminder...Flowers are not permitted in the Moffitt BMT Unit.  Nick is, however enjoying every letter/card that he receives.  I deliver the mail (and his newspapers) to him every morning just before "rounds".  He really looks forward to hearing from you all and it truly puts a spark in his day.  My sincere thanks for this.  For those who need the mailing address:  3424 Cypress Landing Drive, Valrico, FL  33596

Day 4 & 5

Nick continues to battle with stomach issues.  It's really making it difficult for him to sleep.  Doc says we need to "get it under control" before the WBC bottoms out, but the meds they are giving him only seem to help slightly.  I just pray he has a decent night's rest tonight.   Staff believes the stomach issues are from the continued meds, but they've cut dairy products just in case.  Nick is still in good spirits, despite the discomfort/pain.  I'm amazed that he simply pushes forward in his usual positive attitude.  He's still doing three times the amount of expected walking "laps" each day and although he's having to force it sometimes, he's still eating/drinking as directed.  Overall, he is taking it one day at a time and pushing through with that same sweet smile.
We must thank you all again for your words of inspiration - via email and snail mail.  Each message is precious to us.  I've started "decorating" Nick's room with your messages to remind him that you're with him in the "fight".  This will be even more important for the difficult days ahead.  Thank you for keeping him in your thoughts and prayers.
 

Day 2 & 3

All is well on Day 2 and 3.  Nick has been dealing with stomach issues from chemo which has made it difficult to sleep.  He does try to nap whenever possible to make up for the loss.  Eating is tricky as the hospital food certainly isn't Little Greek (at least not until Nick gets his hands on them).  I must say that I do enjoy hearing him order his meal, politely adding comments like, "Could you add a little butter?" or "...maybe grill the bread first?" or "Do you have anything that will give it a little more flavor?" Transplant or no transplant...restaurant is still in his blood!
"Counts" are slowly dropping (which is expected).  The WBC is what we're watching (see board below).  Once those "bottom out" later this week and into next week, unfortunately Nick will be feeling much worse than he does right now.  He will be very weak and completely susceptible to any type of cold/virus/flu..  It will become much more difficult for him to eat, drink, and walk.  We will all be watching him closely to catch any sign of trouble from his weakened immune system to try and control it quickly.
Today - Day 3, Jon and Brittany (our sweet daughter-in-law) came to visit Nick.  It was great seeing them join Nick on his daily walking "laps" on the BMT floor.  Their visit absolutely made his day!

Day 1

We're on the official BMT day count now.  Transplant day is always "Day 0", so today is Nick's Day 1.  Definitely a "slow and go" type of day.  I can see that Nick is frustrated with the lack of energy.  Seems he can't catch a break and get solid sleep during the night, but for now a few short naps are getting him by.  The kids are spending the afternoon with him watching the FSU basketball game.  They are always a welcome sight!  Lauren (our artist) gave Nick's room sign an overhaul.  Great work Lauren!  Jon brought more Little Greek promo items.  The staff will be very happy!

 

Bone Marrow Transplant (BMT)

The BMT was administered this afternoon at noon and took about two hours.  There were several staff members in the room doing last minute testing, delivery of stem cells, double confirmation for identification and treatment.  Nick and I just took it all in.  It was "uneventful" for most of the staff, but to us, just seeing the donor's stem cells come through the door was an amazing moment. Once Nick was "hooked up", we taped a blessed St. Peregrine medallion to the stem cell bag after saying the prayers Mrs. Rita (Greg's mother-in-law) sent us.  Thank you Rita!  This provided a sense of calm as we watched the stem cells being transplanted.  All I could think about is how amazing it all is. How blessed we are that the stem cells were in fact donated by this courageous young woman, and how incredible that they are being transplanted to save Nick.  Thank you all for offering your prayers these last few days.  I am convinced that your prayers are being answered.  I can only beg you to keep them coming.  The next two weeks will be absolutely critical for Nick.  His white blood cells (WBC) will "bottom out" as grafting goes to work and should come back up within the next two weeks if the transplant was successful.  It now becomes a bit of a "waiting game" where we protect Nick from any outside illness because of his compromised immune system and keep him as comfortable as possible.  After that, we will be watching him (like a hawk) to ward off any possible graft vs host issues.  Love to you all.  Thank you for your unending prayers.

   

     

A Special Prayer

It was a tough night and morning for Nick today due to nausea and lack of sleep.  Looks like we'll spend most of the day trying to get him to eat.  Right now all he wants to do is catch up on sleep.  I'm thankful that he's made it through chemo and that today is a doctor scheduled "rest day".  Couldn't have come soon enough!
Tomorrow is transplant - or "Day 0" as they say in the BMT unit, but our donor is giving her blood stem cells today.  I know that many of you have been praying for Nick constantly, but I'd like to ask a favor of everyone reading this blog.  Would you say a special prayer for Nick and his donor today?  It's OK if you haven't spoken to God in some time.  Believe me, He still knows your voice and now is a perfect time to start the conversation.   Please pray that the donor receives a special blessing for having "stepped up" for a stranger.  Pray that her stem cells are healthy and graft with Nick's.  And, pray that once they are transplanted into Nick tomorrow, that he is blessed with restored health.  Thank you in advance for this.  XO

Man Bag

Tonight will be the last night of chemo.  Nick is very excited about this because he hasn't been able to sleep well.  Tomorrow is his "day of rest" and he certainly needs it.  Other than that, he is doing well.  You may have noticed his "satchel" or as he calls it "man bag" in the photo from yesterday.  Below is a pic of him (with bag) keeping track of his BMT floor laps.  The bag is going to be with him for quite some time, so I thought it was worth explaining.  It holds a unit that administers a drug called "Tacrolimus" which is used (along with other medications) to prevent his body from rejecting the transplant cells.  Although Nick inquired about possible color choices, I think the standard baby blue looks quite fashionable.  Frankly, anything that will help my Knight get through this...works for me!

Our sincere thanks for your continued prayers and well wishes!  Nick and I treasure every note, email and card.  They pick him up and keep him fighting.  Thank you so much!

.

Can't Keep A Good Man Down

Early this morning, when I arrived at the hospital, Nick was already awake, alert and energetic as always.  He had showered and was on his second cup of coffee which some may think would be responsible for the energy beaming from him, but most of you know (as I learned many years ago), coffee or no coffee...you can't keep this man down!  Probably for the best today, because it turned out to be another busy morning with the team of Moffitt professionals following all of the necessary protocols.  In addition to the typical procedures, Nick also needed a blood transfusion (1 unit) because his Hgb dropped to 6.9 (Normal male Hgb is 13.5 to 18.0.  In the last few months, the myelofibrosis has kept Nick's Hgb lingering in the +/-8.0 range, sometimes with the help of  transfusions).  At "rounds", the physician said this Hgb drop was expected and noted that it will continue to drop as we progress through the next two nights of chemo.

I can assure you that Nick is doing everything in his power to get through this battle.  He is definitely going above and beyond the "suggested daily goals" as presented by Moffitt staff to aid in the patient's successful recovery.   Basically, if they want 11 walking laps on the BMT floor...Nick gives them 44.  If they want him to drink 5 cups of water...he drinks 15.  Would we expect anything less from a man who not only accepts a challenge (of any kind), but then works as hard as he can to exceeds all expectations?

We did have a few surprise visitors today - the Moffitt Chaplain stopped in and prayed with us.  This literally brought tears to our eyes, it was so beautiful.  We also had a Musician with the Moffitt "Arts in Medicine" Program perform a "mini concert" just for us.  This was an unexpected, but truly special treat for us and brought a moment of calm to a busy (and sometimes stressful) day.  

And last, but certainly not least...Nick's brother, Dejan stopped in for a visit.  He is temporarily staying in Florida to help care for their Mother while Nick is hospitalized for transplant and makes his way through recovery.  All in all, I'd say it was a good day.

Our Greatest Gifts

My apologies for the delay in writing today.  Needless to say, it was a long night.  Nick's chemo ran from 9pm until about 2am when he was finally settled and allowed to sleep.  It was about that same time that I began to seriously consider asking if they could share any "sleep aids" with the caregiver on the mini sofa bed.  Because that didn't seem to be an appropriate question and I simply couldn't find a way to conform my 5'-9" frame on the bed provided, I quietly slipped out of the room, letting Nick sleep while I drove home in a desperate attempt to find a minute or two of real "shut eye".  I returned to the room by 9am this morning to find Nick somewhat tired, but in typically good spirits..  We waited for the Doctor's "rounds" where they confirmed that Nick is progressing well and all systems are a "go".
By lunchtime, our son Jon arrived with a tray full of Little Greek food for the staff.  Yes, he is his father's son!  His presence lifted Nick's spirits - as always!  Jon also gave me a much needed break to go back home for a nap. As the two spent a few hours together, Nick reported that the hospital staff is verifying "the existing record", but he did complete four times the required walking "laps" in the BMT unit with Jon by his side.
Our daughter, Lauren has been keeping close contact to Nick by phone every day from college.  He is so incredibly proud of her!  I know it must be difficult for her being away, but I hope her talks with him lift her spirits as much as they do Nick's!
I often wonder if I will ever be able to adequately express how much it means to me (as a parent) when my children do something so heartfelt - just as the way they are now.  It absolutely makes my heart melt and yet I find that a thank you or a hug just doesn't seem to be enough.  If I may take a moment here:  Jon and Lauren, please know that Dad and I consider you to be our greatest gifts in this life.  From the moment you were born, we simply couldn't imagine a single day without you. We know that your presence is a blessing from God, but now that we are all faced with this difficult challenge, it absolutely means the world to us that you care so much, are so engaged, and set your own lives aside to act with such love.  I know it will never be enough, but "thank you" sweet children, thank you.
We're now approaching the 9pm hour, so the second night of chemo has just begun.  Nick seems well and quite calm (probably due to the lack of sleep).  His nurse tonight is a familiar face from our first Moffitt "experience", so Nick seems confident that the night will go well.  Thank you all for your continued prayers.  We can feel them from our end.  Please, never cease.

Moffitt Admission

We arrived at Moffitt at noon today, checked in and once again quickly settled into the room.  Nick is in the BMT Unit 4 West, Room 4735.  Just as before, there are a flurry of doctors and nurses stopping in to ensure Nick is settled in and all is well in preparation for the chemotherapy (FluBu) that begins tonight at 9:00 pm.  So far, so good.  Nick is in good spirits and outwardly seems as confident as ever.  I'm sure he's a little nervous, but in typical "Nick fashion", he shows no uncertainty.  He greets everyone that stops by with his contagious smile and the kindest of words.  Regardless of the staff's demeanor when they enter, they leave Nick's room with a chuckle and smile.  Once again, and even at the toughest of times, Nick proves that kindness certainly does have a ripple effect.  The only thing more entertaining for me is to see the look on the faces of the Moffitt staff when Nick offers them a chocolate (he stashed away for exactly this reason) or a Little Greek pen or "free baklava" pass!

 The nurse just finished our "white board calendar".  Doesn't look like much right now, but this board will track of Nick's W (white blood cells), H (hemoglobin), and P (platelets).  Today we start with W 4.02, H 7.2 , P 247.  Hemoglobin is low, but they will transfuse him at 7.0.  The white blood cell count will drop to nearly 0 a day or two after transplant and should climb back up the week after. This board also records his schedule which is basically, chemo or "FluBu" today, Monday, Tuesday, and Wednesday.  Nick "rests" on Thursday and is transplanted with the donor stem cells on Friday.

Just as a reminder...Nick's immune system will be seriously compromised.  Because of this, we can only allow immediate family members for personal visits.  Also, no flowers are allowed on the BMT unit.  Please feel free to email, text, and/or reply on this blog.  Nick will receive all messages and will respond as he can.  The days ahead will be difficult so he asks for your patience if he cannot respond as quickly as usual.  If you'd like to send a card, our address is:  3424 Cypress Landing Drive, Valrico, FL  33596.  Although I will be staying at Moffitt through the BMT on Friday, I will be going home late each night to sleep/shower/grab mail and returning early each morning for the doctor's "rounds".  Most importantly, please keep Nick and his Donor in your prayers!  My sincere thanks, R.

The Blessing of Time

Our journey continues on Sunday 1/15.  Nick will be admitted into Moffitt with chemo starting immediately and transplant scheduled for 1/20.  As we look back at the five week delay, we are fully aware that we have received a most precious gift.  We have been given the gift of time. Time to prepare ourselves mentally for the transplant ahead.  Time to get our "affairs" in order.  And most importantly, we've been given the time to spend a few more precious moments with our children and extended family.  We have been truly blessed.

We will post more frequent updates starting Sunday.  Meanwhile, please know that we are so grateful for the outpouring of prayers and well wishes for Nick.  It continues to keep him optimistic and gives him strength, knowing that you are all behind him in the fight!  XO