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

Incredible News from BeTheMatch

We'd like to share some incredible news with all of you. Our son, Jon encouraged as many people as he knew to sign up on the BeTheMatch National Bone Marrow Registry in an attempt to help find Nick a match.  In doing so, one of his closest friends, Andy Lindberg enrolled.  Although he is not a match for Nick, we just learned that Andy IS a match for a 39 year old woman who has Multiple Myeloma (a cancer that forms in plasma cells/white blood cells).  He is currently undergoing the further blood testing to potentially donate blood stem cells.  Nick and I are in awe of Andy and all of the "20something" young people who have registered and are willing to save a life.  Just one month after enrolling on the registry, Andy has been matched and has agreed to step up.  I can assure you that he will make an incredible difference in the life of this recipient.  Thank you Andy!  We will be praying for you and the recipient as well.
BeTheMatch has reported that approximately 700 people have signed up on the registry due to our efforts for Nick.  It is so moving and we are truly grateful to all of you who continue to share Nick's story and add to the registry.
Update:  Nick is doing well.  Lauren & I are caring for his catheter and he visits Moffitt weekly for dressing changes and blood counts.  So far, so good.  No additional transfusions have been necessary to date.  We are in prep mode for the Jan 15th admission back into Moffitt for the transplant.
Nick wants to express his thanks for all of the cards, letters, and emails of support.  He says "it gives me strength to know that everyone is behind me on this journey.  Thank you so much for this."