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.