A Very Merry Christmas

Nick passed "Day 300" like its nobody's business.  Seems I'm the only one who continues to count his days post transplant.  I just find it amazing that even with tiny "hiccups" along the way, he is doing so well!  I still reflect back to the miracle that took place and I still thank God every single day.
Today is officially Day 333 and with the holidays upon us, we feeling nothing short of completely blessed!  Nick received the "OK to travel" as Day 300 approached.  To date, he has taken one trip with Jon to Chicago for Little Greek business and one with Lauren to San Francisco (1/2 work and 1/2 "Father/Daughter time"). Nick really missed not traveling this year because of his illness, so its an important milestone that he's "on the go" again!

For Thanksgiving, we were all together in our St. Pete place.  Just before dinner, we all went down the street and watched the sunset (one of Nick's new favorite things to do).  It was beautiful, but not nearly as beautiful and precious as the time we were able to share with all of our children.

Nick's blood counts are all slowly heading in the right direction.  Moffitt continues to reduce his meds, but very slowly to avoid any issues.  He's feeling well and sleeping better at night.  He still wonders if his full head of jet black hair will ever return, but I simply reply, "Honey, don't worry, you've got a great Sean Connery look go'in on!"  The truth is, none of us will ever really be the same after what we've experienced.  At least I hope not.  I hope that we all went on this journey with Nick and that it changed us for the better.  Hopefully we've all learned to appreciate every day as if it REALLY is our last one on earth. 

I wish you all a very Merry Christmas!  Please know that I will never forget your love, care, concern, and prayers during this difficult year.  I keep you in my heart and prayers.  May you be blessed this Christmas in every way.

God's Perfect Peace,

Day 200 A Living Miracle

We have officially passed Day 200 (August 8th) and I believe my husband is a living, breathing, walking, talking MIRACLE!  Here we are with our son, Jon at the Premiere of HBO's Hard Knocks at the Tampa Theater.  I suppose its true, "a picture speaks a thousand words" and our smiles tell the entire story, but I'll do a quick update as well. 

Nick has continued appointments at Moffitt, but he is currently on a bi-weekly blood test only and monthly doctor check-in.  They tried reducing some of his meds, but he ran into slight GVHD rash- type symptoms, so they went back to the levels his body would agree with.  They will begin reducing them again, but at a much slower rate to avoid any complications.  He feels well enough to work each day and we've been able to relax in public without the fear of catching colds/germs.  Nick's hair is quickly growing back, although he seems puzzled with what was once jet black hair, now seems mostly gray.  To me this isn't a surprise.  If they ever stopped selling L'Oreal Preference, I'd be in the same boat!  For now, Nick seems satisfied to HAVE hair and to me he's as handsome as ever!  I have absolutely no objection to his "Sean Connery look"!  Basically, we've been taking it one day at a time.  We're also "downsizing" to a smaller place in St. Pete, but this transition won't be complete for some time. If Nick could have gotten any better from the experience of BMT, it was only to have learned to slow down.  He makes an effort to watch the sunset every weekend which brings a sense of peace to the fast-paced life in the restaurants.  All of the kids are doing well.  Lauren is starting her second year at FGCU in Fort Meyers and Jon is doing an incredible job in his work for Little Greek.  Jon and Brittany work hard and make quality time together.  I'm so happy that they learned to do this early in their lives.  We are all incredibly blessed.  We look at Nick as our confirmation, that what we believe is actually true...miracles DO happen and God IS most certainly on our side.

Day 121

Nick is now at Day 121.  He has lab "check-ups" every other week at Moffitt and meets with Dr. Perez monthly.  Nick has been a little frustrated that his white blood counts (WBC) have not been going up as quickly as all of the other counts, but Dr. Perez explains that this is nothing to worry about.  He's feeling fairly well although he does have soreness in his arms and legs.  Again, Dr. Perez told us that this is not uncommon and probably due to Nick's walking and hand weights, however he says it feels more like additional after-effects of the chemo.  Nick has been released to do more activities, including riding his bike, however I insist that he have someone with him whenever possible.  He has been going to work every day, but to the office only and he has not been "green-lighted" to travel just yet.  Nick has started visiting his Mother again, but still remains diligent in his routine to stay germ-free.  He spent Mother's Day with Lisa by picking her up and bringing her to our house.  They sat and watched a little TV and he fed her a piece of cake after helping her read her Mother's Day cards.

On Tuesday, Nick and I have been invited to join a meeting with the BMT Physician's at Moffitt.  Through Marc Silver at BeTheMatch, we were introduced to Jeff Haertling who is a BMT donor and advocate who is working on a mentoring program for future BMT patients and caregivers.  We will be there to share our experience and the affect that Nick's "coaches" had on him as he navigated through the process.  We hope to offer assistance if they say "yes" to Jeff's proposed pilot program.  We also hope to share our personal journey with our new book, "My Knight Notes, A Caregiver's Journey through BMT".  It is now available on Amazon.com, however we would like to make the books readily available to all BMT patients and caregivers that frequent Moffitt.  Basically, anything we can do to make the journey easier for future cancer patients, we're up absolutely for it!

DAY 100

What a journey this has been.  I remain completely grateful that you have followed us and prayed for us throughout these 100 days.  I know, in my heart, that we couldn’t have done it without you.  I am forever indebted to you for your kindness, love, encouragement, and prayers. 

It’s a surreal feeling, being at Day 100.  Nick is doing remarkably well and slowly spends more time working and exercising.  It’s funny hearing Nick’s response, as we greet family, friends, and neighbors.  They say, “Nick, it’s good to see you.”  Nick replies, “It’s even BETTER to SEE YOU!”  Seems he has a sense of relief, knowing that the most critical “100 days” have passed.  My hope now, as we return to our “new normal” routine, is that we are mindful of the precious gifts around us – our family and friends.  After the threat of losing one, we realize that they truly are the jewels of life.  Not only are they precious, but they add sparkle to an otherwise tedious life.  May we always see their value and respect them as God’s gift to us.  I further hope that a day never passes without us thanking God for each and every one of these gifts.  I have absolutely no doubt that God’s intervention, through your unending prayers, brought Nick to restored health.  HE has truly blessed us with Nick’s presence for many years to come.  Life is most certainly good.

Biopsy Results

My apologies for the delay in posting.  On Wednesday this week, Nick anxiously pulled up his biopsy results on the Moffitt Patient Portal.  He scaned the results and a smile emerged.  Nick's bone marrow biopsy shows that he has 100% donor blood - even in the marrow!  I could see that he wanted to shout for joy, but his instinct was to instead wait and confirm what he sees on the results with Dr. Perez personally.  He did make contact with the doctor's office and at his appointment next week, they will confirm the results with him.  At this point, everything looks great and Nick is feeling well.  We'll watch for the blood counts to continue climbing so that his immune system will be stronger.  For now, we're just enjoying life!

Day 89 "Graduation Day"

It was a very full, but good day at Moffitt yesterday.  First labs, then the meeting with Dr. Perez, and finally, a bone marrow biopsy.  Based on the lab results, Dr. Perez reduced some of Nick's medications and eliminated others.  Nick has gone from 40 tablets/day to 10.  The doc also said that Nick is in the top 10% of her patients' success in recovery after BMT.  You know he was happy to hear that!  We're now scheduled to see Dr Perez only once each MONTH with bi-weekly visits for labs only!  This is incredible news and marks a sort of "graduation" for Nick.  Since we won't see the doc and PA's as often as we have been, there were "hugs" and "congratulations" all around.  We even paused for a pic with Dr. Perez marking this important milestone day.
The biopsy after our meeting went well.  Learning our lesson from the last one, Nick went with the IV sedation which proved to be a smart move.  He felt fine waking up, but was famished from the fasting.  Our 10:45 biopsy appointment put the actual procedure finish at 2:00, so I had a half of a cheeseburger waiting for him in recovery.  Needless to say, it didn't last long!  Nick hasn't had a huge appetite in the last few months, but no food or water for 13+ hours was a bit more than even he could take.  Results of the biopsy will be given to us in about a week, which will be close to Nick's Day 100.  THAT will be another milestone for us and we're excited to mark the day with a little celebration of sorts. As blood counts continue to climb, we are reassured of the success of the transplant.  Once counts get closer to "normal", Nick can go on to do many of the things he did pre-transplant (like traveling, biking, etc.).  He will always live with a "new normal" in his steps to avoid GVHD or infections, but our hope and prayer is that blood counts continue to trend in the right direction so that Nick can gain his full strength back and continue to live his precious life for many, many, more years to come.
There isn't a single day that passes when we don't think about the prayers you all offered in Nick's name and we are truly grateful.  We simply couldn't have made it through this journey without your outpouring of love and kindness.  We will check in again on day 100, hopefully with the biopsy results.  After that, I will post Nick's status on our monthly doctor visits to Moffitt.

Day 88

Yesterday we spent the day with our daughter, Lauren and her sweet beau, Zach in Fort Meyers.  Lauren is a student at FGCU (Florida Gulf Coast University).  She was unable to come home for Easter because of classes and work, so we drove over.  We were especially glad to meet Zach.  Seems Lauren is attracted to a young man who is much like her Father.  Zach just graduated culinary school, loves to travel, and says he "just wants to see Lauren happy".  Sound familiar?  In turn, Nick took on a Zach trait and wore his baseball cap in "fashion".  It was a beautiful day spending time with these precious kids!  At this point, we are scheduled for the bone marrow biopsy early tomorrow morning.  Results will be important and we'll report as soon as we have them in hand.

Day 86

Happy Easter!  Buona Pasqua!  Christos Anesti!  Hristos Vokrese!
No matter how you say it, we hope you had a beautiful Easter.  Nick is doing very well.  Counts are progressing, but still low, keeping him in the "immune compromised" zone.  He takes his temperature twice a day (as he has since we were released from the hospital) and his meds as directed.  He is also extremely careful about protecting himself from the sun since it is known to activate GVHD (Graft vs Host Disease).  We keep the house disinfected and are constantly "swimming" in GermX.  So far, all of the precautions are paying off.  We will see the doctor on Wednesday and Nick will have another bone marrow biopsy - this time with IV sedation.  The results will take a few days, but we are anxious to know if all of the "bad blood stem cells" are gone.  As we approach day 90, which is a milestone for us, we thank God for the incredible blessings we have been given.  We see each day, especially those spent with family and friends, as a true gift.  Peace and blessings to all of you who continue to pray for Nick.  We spent the late afternoon/evening on Treasure Island, visiting with Jon and Brittany and watching the sunset.  This photo "took my breath away"...

Day 77

This week we found ourselves just sitting quietly and thinking about how lucky we are.  Lucky, and completely blessed!  Nick is doing very well.  He has driven himself to the office each day.  He does keep the work day shorter than usual as he becomes a bit tired in the late afternoon/early evening.  His last counts were good and although some numbers seem to be bouncing around a bit, the doctors report that they are happy with his progress.  Moffitt appointments are only one day per week right now.  Nick remains diligent to avoid infection/illness as his immune system is not yet back to normal.  His coloring is good and he's as "up beat" as ever.
I'd like to take a moment to thank you all again - from the bottom of my heart - for all of the prayers for Nick.  I am completely convinced that your prayers were directly responsible for Nick's recovery from the BMT and continue to aid him in his fight with Myelofibrosis. So...

"My prayer tonight is for each earthly soul,

those who prayed for Nick's healing to heaven above.    

May they know that God heard and answered their call,

and may they be the blessed ones for their kindness and love."  

Day 70...Yes

This week we had appointments at Moffitt on Monday, Wednesday, and Friday.  They have definitely been keeping a close eye on Nick's counts.  They watch the trend to make sure all levels are moving in the right direction and adjusting meds based these numbers as well.  Today proved to be an exciting day as Dr. Perez not only gave Nick another A+ rating, she also "released" him to drive AND to go back to work in his office!  I observed a sense of relief in Nick's demeanor, in fact this news put a new "pep in his step" that I haven't seen up until now.  I'm sure the newfound excitement has nothing to do with the fact that he has experienced just about all he can take, living in what he refers to as "Rene's World".  Basically this "world" consists of an influx of political news and/or news radio accompanied by constant movement in the house or yard which looks more like a game of "beat the clock", and 24/7 doting over the puppies which I'm sure to him looks like some type of behavior brought on by "empty nest syndrome".  Either way, I can assure you that the thought of waking up Monday morning and driving himself to his Little Greek office is an absolute comfort for him.  I believe I've prepared him - after 70 days of sounding more like a Mother than a Wife - to perform serious hand hygiene at every turn, to walk away from anyone coughing or sneezing, and to wipe surfaces even if they look clean.  His immune system won't be normal for a while longer, but we're both fully aware of the consequences and our goal is to stay on the current path.  I will admit that as a caregiver, most days I felt confident that Nick would make it through.  What I wasn't so confident about is whether or not WE would survive.  Not only are you "joined at the hip" - all day, every day for 60+ days, but your marriage turns into something that resembles a business relationship.  It literally becomes your JOB to make sure that the patient has every possible chance at survival.  As a caregiver, most days I found myself ignoring the rolling eyes and jokes about being completely overprotective.  I just kept thinking, "it's not personal...it's the job at hand and there's no way 'round it.".  At this point, between Nick's determination and positive thinking, my obsessive behavior to help save "my knight" right back,  and the answer to hundreds (if not thousands) of prayers from all of you, I believe Nick is a survivor.  I know that he doesn't want to consider himself "out of the woods" until we're closer to Day 90-100, but today when Dr. Perez looked Nick right in the eyes and said, "You've been blessed", I felt those words in my heart.  My eyes started to water with grateful tears, but a smile quickly took their place and I thought to myself..."yes".

Day 61 and Doing Well

Hello everyone!  I know it has been a couple of weeks since my last post, but being home has kept me quite busy.  This is a MUCH bigger place (than our little apartment) to keep under control and germ free.  Nick is doing well.  We were a bit worried about the drop in his counts last week, but today's labs reveal that they are back up!  Hgb is at 10.8 (wonderful!) and both the WBC and platelets are on the upward trend.  Doctor Perez gave Nick another A+ today and did encourage him to start walking even more as he feels up to it.  Although he does still need a caregiver 24/7, they are allowing us to "loosen the reins" a bit.  Although we really do love each other, we also really feel relieved at the thought of not being in the same room together every moment.  Lord knows Nick is ready for a little space and I'm looking forward to a solo trip to any store (other than Costco).  He honestly tries to be patient when I've needed to shop, but it's almost impossible for him to resist the urge to make a beeline for the register just minutes after we enter.  Part of me secretly hoped that with the female donor's stem cells, he would instantly become someone who understood the joy of shopping, but I can report (based on a recent excursion) that I may as well throw that idea to the wind!  It's funny, his Mother once reported his behavior on their shopping trip.  She said, "Rene', it's like his hair was on fire!"  I remember giggling and just thinking, yes, well that certainly sums it up.  At this point, we can't be away from each other for long periods of time, but a little less face time certainly won't hurt either of us.
The main issue right now is to remain diligent in our cleaning (house and hands) to keep Nick from getting any type of cold/virus.  Once his counts return to normal this won't be as scary, but counts are still low which would make it difficult for him to fight off a virus.  He is eating fairly well and still on the immunosuppressed diet. He says he's starting to get his energy back, but some days still feels very lethargic.  Our hope is that the extra exercise will help him re-build his strength and give him a boost in energy.
I will write just once a week unless Nick has any issues that come up.  I must share with you that he remains moved by the outpouring of love from all of you throughout his journey.  Please feel free to continue reaching out to him by phone, email, snail mail, or text if you'd like.  These are his life-lines right now.  He hopes to get back into his office closer to Day 90/100, but for now he is content with having made it through the transplant, starting to feel more like himself,  and communicating with family, friends, and co-workers from home.  I'm not convinced that a "thank you" will ever be enough for the enormous support you've all given.  We have felt your spirit cheering us on and it has carried us through many difficult days, so...thank you...from the bottom of our hearts, thank you.

Home

Have you ever seen anything so beautiful?  I have spent several months wondering if we'd ever see this genuine smile again...and yet here it is!
Today, (Day +47) at our Moffitt appointment, Nick was officially released HOME!  This is a huge milestone for us and although he's still not "out of the woods", it does represent the fact that Dr. Perez is happy with his counts and progress.  Our next milestone will be making it to Day +90 when, if all goes well, Nick would be released to drive, work, and exercise without a caregiver by his side.  For now, we're just blessed to be at a point where he is free of pain and now able to stay in his own home.  Life is good.
Just prior to receiving the news from the doc today, Nick's dear friend from Cornell/Sigma Pi, Joe Ruocco stopped by for a visit.  The two were able to catch up between Nick's labs and the doctor appt - about an hour.  As you are all aware, Nick is an extremely positive person, but it's moments like these that really raise him up.  Visiting with friends and family seem to carry him somehow.  It's as if he absorbs the strength and love of the person he's speaking with and it catapults him through the day with such optimism.  Thank you Joe, for stopping by Moffitt to be with Nick today.  Your presence was really important to him and I know he enjoyed every minute.  I must also take a moment to thank all of you for continuing to reach out and support us both.  We will never be able to express how much your love and support has meant, but know that you are truly in our hearts and prayers as well.  You lift us up.

Weekend Pass

We received the results of the bone marrow biopsy.  Nick is almost 100% donor - in blood and marrow!  Doctor was very happy with the results as well as Nick's report, "other than feeling a little weak and minimal remaining side effects, I'm feeling pretty good!"  Doctor Perez finally gave Nick the "grade" he was looking for and printed out an awesome graph for the blog to show his progress/trends.

In addition to the A+++ Dr. Perez noted on the graph, she also gave us a "weekend pass" to go home.  Needless to say, that news was music to our ears!  She will decide Monday if we can be at home for good.  Anyway, we're home now (thank you God), but it definitely took some time to get this place up to par.  I've spent a lot of time cleaning and disinfecting everything!  I've also continued to prepare almost every meal at home because of Nick's Immunosuppressive Diet.  Over the last month, I've realized that there's comfort in cooking myself vs. going out.  It's critical that all safe handling and food storage rules are being strictly followed.  Lord knows, the last thing we want to do is to end up back in the hospital due to infection and it wouldn't take much to affect Nick in his current state.  This weekend, he seems to be enjoying just having access to his chair, his bed, his shower, and probably a little extra space between him and his caregiver!  He's starting to walk more and use the stationary bike that our sweet neighbors, Kathy & Greg gave us.  Nick is anxious to get on his "real" bike, but that will take doctor (and wife!) approval.  I'm keeping pretty close tabs on him, but if he "eyes" that bike one more time, I'll be forced to hide it at an undisclosed location.  For now, the stationary bike is helping him regain some energy and strength and there's no chance of taking a "spill".  THAT's what I'm talk'in about!  Here's the latest pic of MyKnight.  He's looking great and feeling stronger every day.  He's not quite "out of the woods" yet, but we will stay diligent in our hand washing, avoiding crowds, and safe food handling until Nick's immune system returns to normal.  For now, we feel truly blessed.

Looking Good

Take a look at my knight on "catheter out and port in" day.  Really looking good!  Each day he continues to feel better.  The morning of the procedure, he was certainly ready to get rid of the catheter line.  Procedure took about 2 hours and left him tired and sore in the chest area.  Over the weekend, I've been watching the new port and incisions "like a hawk".  Infection can easily set in and we want to move quickly if we see any signs of it.  Watching for any discoloration/redness/fever.  Checking temp almost every hour the day of the procedure, then a little less frequently Sat and Sun.  So far, so good.

On Nick's last blood draw day at Moffitt, we did receive great news with regard to blood.  The latest:  WBC 4.32, Hgb 9.0, and Platelets 116.  Although we're still waiting for the results of the bone marrow biopsy, the latest blood results reveal that Nick's stem cells are generating 100% of the new donor blood cells.  Now, we hope to see the same INSIDE the bone marrow.  That will be revealed in the bone marrow biopsy results.  We should receive them on Wednesday when we meet with Dr. Perez.

Saturday, Nick has an awesome visit with his fraternity brother from Cornell, Tim Hawes (aka "Hawes-a-matic").  He and his lovely wife, Sharon stopped by on their way to the Gasparilla Half Marathon in Tampa.  I cannot begin to tell you how happy Nick was to see Tim.  They were Sigma Pi fraternity brothers and when they get together, its as if no time has passed at all.  We feel very blessed to have friends like these.  Thank you, Tim and Sharon...you absolutely made Nick's day!  My apologies for neglecting to take a photo during the Saturday visit.  I think I'm growing weary and confused being away from home base this long.  Please accept this latest pic from the Bucs game last October.  I can tell you that Nick was MORE than happy to include a picture WITH HAIR!

Left to right;  Jon Vojnovic, Joe Ruocco (Cornell/Sigma Pi), Nick Vojnovic, and Tim Hawes!

Lauren's Devotion

Our daughter, Lauren sent us a copy of a narrative she wrote for a class at FGCU.  It's based on her experience the first time she came to the hospital to see Nick.  I'd like to share her beautiful devotion with you...

My Hero Behind the Window

            My mind was still. I drove my car for an hour in complete silence with the whistle of the AC ringing behind my frozen thoughts. It was like the past 11 months were all a dream, and a moment that seemed in the distant- was now happening.

            I suddenly arrive as if the last 60 minutes has turned into one. I pull my car through the drive through and hand my keys to the valet with what little strength I could muster. My eyes fix on the sliding glass door ahead that reads the word that has haunted me for months- “cancer.” My mind blurs all of my surroundings as I make my way through the still hospital air. I finally arrive at the elevator, a 20-foot journey that seems to take a lifetime.  My eyes are locked on the illuminated “3” without regard for any of the other people in the elevator with me. I make my way out of the elevator and start down the hallway. The cool crisp air makes my skin crawl, almost like my body is completely rejecting the idea that this is actually happening.  The hallway seems endless, with every twist and turn another blank white path awaits me. The humming fluorescent lights showering me from above while the smell of rubber gloves and hand sanitizer burn my lungs with every breath. Finally, the sealed doubled doors face me, and I stop dead in my tracks. I stare, blank, still, silent.

             I finally muster up the strength to break the seal of the doors to enter the first room of the bone marrow transplant unit. Harrowing images flood my mind of my father lying weak on a hospital bed latched to various tubes and wires, trying to mentally prepare myself for what I am about to see. I am welcomed by a woman sitting at the front desk who immediately says “Please wash your hands thoroughly over there,” As she gestures to the spotless white ceramic sink in the corner, she continues “then come take a mask and apply some hand sanitizer before entering the BMT unit please.” I nod and begin to make my way to the sink. The boiling hot water against my skin doesn’t burn as much as the pain inside my heart. I suddenly hear a knock on the second set of doubled doors. I immediately turn around, with hands still doused in scorching water and soap when I see the only thing that could’ve made me smile. My father-my hero- standing, smiling back as me through the small rectangular window in the door. I beam with a smile bigger than you could ever imagine, as he waved at me with such joy that I can feel a sense of warmth radiating in my heart. He has one hand waving at me and one hand on an IV pole carrying multiple bags of fluids and chemotherapy drugs but all I could focus on was his beaming smile. I quickly snatch a mask from the receptionist and burst through the doors into the BMT unit. Without thought I motioned for a hug which I quickly realized was against the rules. We exchange a look that said it all. I was in shock; -just 3 days after a bone marrow transplant here he was- up, walking around, and with the biggest smile on his face. In this moment I realized there was nothing that could stop him; anything is possible. We were nowhere near the end but I just knew this was a fight he refused to lose. And until then, I have never felt such comfort or hope. I believed him beyond measure.

Lauren Vojnovic 
Professor March - ENC 1101 
14 February 2017

(Nick and Lauren pre-transplant)

Tapering Rux

Nick is doing well and counts are moving/trending in the right direction.  Although Nick is progressing, at our meeting with Dr. Perez (BMT doc) Friday, she shared concerns about allowing Nick to return home right now because we are just about to begin tapering one of his meds, Ruxolitinib.  Rux is one of the meds Nick was given in the M.D. Anderson "trial".  It was a study of Rux in combination with the chemo Vidasa in an attempt to control myelofibrosis and avoid the transplant. When the trial was not successful for Nick, he was ordered by Dr. Perez to continue the Rux in lieu of tapering prior to transplant.  The side effects of Rux with regard to BMT patients is quite controversial, but all research stresses that regardless of  the patient situation, Rux must be tapered to avoid serious complications.  Dr. Perez kept Nick at the 30 mg he took during the trial throughout the transplant process.  Starting day +30 post transplant, she now has him tapering off the drug.  She does have serious concern about this - even at this point - so its understandable that she insists that we stay very close to the hospital during this period.
On Monday, Nick and I transferred to the Moffitt Furnished Housing (Lodge at Lakecrest across from USF).   We've been on their waiting list since our discharge February 7th.  This accommodation is 1/3 of the expense of the hotel and provides more room and access to amenities on site.  If you know Nick, you'll understand when I say that the walking trail and lake on the property alone made it worth the move. Obviously our goal is to get home as soon as possible, but we're willing to do whatever it takes to make sure Nick is a safe distance for emergency treatment if necessary.
The doc also added an additional drug this week, Prednisone.  This drug is meant to prevent any graft vs. host disease (GVHD) as Nick tapers the Rux.  GVHD is where the donor stem cells can start attacking Nick's organs. We pray this doesn't happen, but as we understand it, the key with GVHD is to catch it as quickly as possible so that Moffitt has a chance to slow or stop the process.  We watch for things like fever, skin rash, digestive changes, etc.  The tapering started Monday and will run for 10 days where he will be Rux-free on March 1st. Nick reports that he feels he is slowly getting better each day.  He said he has a little less pain each day.  He does still have a touch of the mucositis, but rates it at about a 2 on the pain scale (1-10).  For about a week now, he has had soreness in the palms of his hands and burning at the heels/soles of his feet.  He says it does seem to be getting a little better each day.  All of these symptoms continue to be the result of the chemotherapy he was given prior to transplant.  Today Nick had a bone marrow biopsy.  This biopsy will tell us if the old CAL-R and TET2 (bad cells) are gone and the newly transplanted cells have "taken over".  We're not sure when the results will come to us, but we'll share as soon as they're in.  It should be noted that Nick chose to use "local" anesthesia only (just as he did for the last biopsy) but after today's procedure, he asked that I never allow him to do that again!  Both he and the nurse explained that it was "difficult getting the marrow".  Both agreed that NEXT TIME = IV SEDATION.  His back is a bit sore from this, but we've kept ice on/off every 20 mins which seems to be managing the pain.
Wednesday he will go in for labs and see the Physician Assistant.  Friday, they will be removing the triple lumen catheter/line in his chest and will replace it with a "port".  This will be a HUGE day for him because the port is placed under the skin which will allow him to;  shower without having to shield it from water, "flush the line" monthly instead of daily, and will allow him the option of wearing a t-shirt!  Oh, how I take for granted the little things...taking a nice warm shower, sleeping well at night, waking up healthy.  It's not until these things are taken away - even for a brief time - that you realize they really are gifts to be treasured.  Thank you, God for every gift...both big and small.

A Much Needed Family Visit

Today has already been a great day!  Nick's brother, Greg and his family came by to visit from Atlanta.  It was beautiful to see Nick visiting with Greg, Susan, Alex, Ava, and Nicky.  This truly made his day!  They came bearing gifts, but one of the most special was the calendar Ava made entitled, "Uncle Nick's Countdown".  It's a calendar she created to keep up with Nick's admission, transplant, and recovery milestones.  When Susan shared what Ava had done, it touched Nick in such a way that he had Susan bring it so he could see it personally and keep it with all of the wonderful cards and letters from you all.  Thank you Atlanta Vojnovic's, for reminding Nick that he continues to be in your thoughts and prayers!  We are truly blessed to have you as family.
Our day continues with our 1pm Moffitt appointment for Labs, then a visit with the doc.  PLEASE say a little prayer that Nick and I will be released home now.  It is early (considering Moffitt standard procedures), but we're still hopeful.  Nick is doing well, but we will only know our status once they get results from his labs today and we meet with the doc.  All I can do right now is take the advice of dear Santo (Padre) Pio..."Pray, Hope, and Don't Worry".

Missing Home

Nick and I have now been in the hotel for one week.  I can tell you that it seems like MUCH longer...to both of us.  The good news is that Nick is slowly improving each day.  Mucositis is still present, but it is getting better.  He has learned to stick with softer foods and lactose free dairy.  He's sleeping well and does still appreciate the fact that he's not in the hospital.   He's eating light, but well and we monitor his liquids to make sure he stays hydrated.  He takes many meds - both AM and PM (see below) as ordered.  I flush his catheter line on non-appointment days so we can avoid the extra visits to Moffitt.  All in all, we feel very blessed that he is doing well and is fairly comfortable.  On the flip side, we're definitely going a bit "stir crazy" in this little place with limited things to do.  It's especially challenging to think about getting out because Nick really can't be around any crowds, he does get tired quickly, and we're practically in our own neighborhood anyway.  Our hotel is located within 20 mins of Moffitt (as required), but we're also just about 20 mins from our own home. I can't believe how much we miss it.  Today, Nick and I sat down and decided that if counts are good on Wednesday and Friday, we will do our best to encourage the doc to let us go home. For now, we walk or see an occasional movie to pass the time.  It does get frustrating here, but I know that boredom and missing home is a small price to pay for getting Nick safely back on his feet.  Thank you all for thinking of us and reaching out.  Nick continues to enjoy every message of love and support.  Please know that you all are in our prayers.  P.S.  Happy Valentine's Day to my sweet Knight!  Don't worry, we'll make it back to the castle soon.  XO

Day 20 with McHugh

Today was the first day (since our transplant journey began) where Nick did not have to go to Moffitt.  I did the catheter flush at the hotel, so our next Outpatient appointment for labs and doctor is scheduled for tomorrow.
It was a nice, quiet day and Nick was feeling well enough to visit with his dear friend from Cornell and Sigma Pi, Tom McHugh!  Nick and Tom have remained friends since their "college days".  He lives in Chicago, but drove from Orlando after attending a conference there.  It absolutely made Nick's day to have the opportunity to spend some time talking (and walking) with Tom.  It occurred to me that not only Nick's positive attitude, but the support from friends and family, truly does make all the difference in his chance at recovery.  Thank you, Tom and thanks to all of you who are supporting Nick by phone, email, mail, and in person.  You are precious to us and we are sincerely grateful for your love and support.

Day 19 Counts Are Up

As if he wasn't already our "hero", today Nick proved (once again) that pushing through the pain and discomfort along with keeping a positive attitude is the formula for success in the end.  We still have a long road ahead, but at our first Outpatient visit (+19 days after transplant), Nick's blood counts are completely remarkable.  His WBC is 4.15, Hemoglobin is 8.7, and Platelets are at 108.  This is incredible news!  These counts mean that he has "officially engrafted". Please know that these counts can bounce around, but we just feel completely blessed right now.  He is out of the hospital and starting to eat.  Life is good.  The mucositis is still bothersome in his digestive tract, but it's still the delayed effect of the Busulfan
(chemo drug/pre-transplant).

Now that he has engrafted, we will face Graft vs. Host Disease (GVHD).  Acute GVHD can occur within the first 3 mos.  Chronic GVHD can occur in the first year or two.  He has been on anti-rejection meds since the transplant, but he will be taken off of them in the next few weeks.

Now feels like the best time to thank you again for your continued prayers for Nick.  I'm convinced that you all must have a direct line to heaven!  Please know that your prayers are helping us in the most incredible way.  Nick is living proof and our only dilemma now is how we'll ever be able to thank you enough.

God's Perfect Peace,

Day 17 & DISCHARGE Day 18

Day 17 proved to be just a little better for Nick, but today - Day 18 - he spent the day preparing for DISCHARGE!  It has been a very long, emotional day for all of us, so I'd better give the short version here.

The day began somewhat typical, Nick caught up on the local news and tried to have something to eat.  It has been about a week of just fluids (mostly IV), but he still can't seem to successfully complete anything from the Moffitt cafe.  This doesn't come as a total surprise considering the quality of hospital food.  Frankly, it's difficult to take...even if you don't suffer from mucositis. The discharge process was quite lengthy and included meetings with nurses, staff, and pharmacists. Although we learned that he was being released this morning, it wasn't until 4:30 pm that we were headed for "the BMT bell"!  This is the bell in the BMT unit that each patient rings on their way out of the unit.  It's quite a moment, so Jon
joined us in person while we had Lauren (from her class @ FGCU) on Face Time to participate in the "big event".  There were smiles, tears, and applause from the BMT staff.  Once we rolled Nick just outside the front door, he exhaled and said, "This is awesome.  What a great day."  Jon and I loaded the cars and headed for the hotel.  Thank goodness Jon was with us because it took some time to get everything unloaded.  Tonight Nick has already had a few very small bites, took his meds and climbed into bed for the night.  He's happy to be able to eat at this point, but the things he's really looking forward to include 1)  the comfort of a real bed, and 2) no one waking him up!  Sleep well my sweet prince...sleep well!

Day 16

Although I've been posting every other day, it looks like the next few will be fairly eventful.  Today, Nick's ANC jumped to 550 which means he is officially "engrafted".  The mucositis is still very painful for him, but as these numbers climb in the next couple of days, he's supposed to get some relief in that area. He hasn't eaten for about a week now, so once he can eat soft foods, they will discharge us (to stay close by).  Right now this looks like Tuesday.  For now, we pray that the blood stem cells received from the donor continue to engraft and any GVHD (graft vs host) is minimal.  Please keep praying my dear friends.  Please keep praying.  Acute GVHD usually happens in the first three months.  It can affect the skin, intestines, and liver and can be mild to severe.  Pray for the mild, please.

Tonight he was disconnected from the "pole" with all of the IV fluids/meds.  He does still have the chest catheter which will stay with him even after we're discharged, but he's trying to take all meds orally now.  Swallowing is very difficult, but somehow he's doing it.  I honestly remain amazed at his tolerance for the pain and his strength to push on.  It brings to mind a card we received from Dolores & Mike Smith.  It read, "Tough Cookie - noun.  1.  Someone with just the right mix of sweetness and strength.  2.  One who doesn't crumble under pressure.  3.  A fighter who's too busy kicking butt to sit down and cry, but knows it's OK to do both.  4.  A person who doesn't always ask for support, but has lots of friends who would do anything to help."  Boy, if that doesn't sum up Nick...what does?

He did his walking laps just prior to watching the SuperBowl with Jon and Brittany by his side.  I see these two and think, what incredible kids.  I'm sure they could have gone anywhere to watch the game, probably even joined friends, but they came to the hospital to watch the game with Dad tonight.  How beautiful.  I feel blessed by their presence and I know Nick feels the same.

Day 14 & 15

Nick has gradually felt a little better each day.  His mouth and throat are still quite painful, but he sleeps ok at night and does his walking laps as required for recovery.  Taking meds is difficult, but in typical "Nick fashion", he pushes himself to complete the task.  WBC was .83 yesterday, and WBC is .97 today.  When the doc came through for morning rounds, she said he may be "discharged to stay close by" on Tuesday.  This depends on how the blood counts continue to "trend" and if the ANC count is high enough.  Yes, I'm going to throw another blood count number at you.  The ANC is the "Absolute Neutrophil Count".  These are the baby white blood cells that help to fight bacterial infections.  A healthy person's ANC is above 2500.  Nick's is 370 as of today, Day 15.  The ANC must be at least 500 for a "discharge to stay close by".
Once we are "discharged to stay close by", we still cannot go home.  Moffitt makes it mandatory that we stay somewhere less than 20 minutes from the hospital for 2-4 more weeks.  This is due to the low counts, compromised immune system, and emergencies that can develop.  We're still working on where we will go since our home is 35-45 minutes away, but we will probably be at the Moffitt apartment housing or a local hotel.  During this period of time, Nick will have daily appointments at Moffitt and I (as Caregiver) or Jon (as back-up Caregiver) will be with him 24/7 until they "discharge us home".  Basically, Nick will not be able to be in public without a mask, drive, work, or travel until the doctor gives him the "OK".  We know that we still have a long road ahead, and Moffitt has been very good to us, but we are happy to be moving on to the next step in this process.  We so wish we were going home, but we will follow the doctor's advice to give Nick the best chance at a full recovery.  For those of you following the counts, here are the numbers for Day 14 and 15:

Day 12 & 13 Look at Him Gleam

Look what I found, Nick's contagious smile, how beautiful!

Day 12 was another extremely painful and difficult day, so I prefer to move right on to today, Day 13.  I think its fairly ironic that 13 happens to be Nick's favorite number.  He was born on September 13th, but he also considers Friday the 13th one of the "luckiest days of the year".  Isn't that so like him.  When everyone else thinks of it as a terribly unlucky day, Nick takes the positive road.  Well, THIS 13 (Friday or not) has shaped up to be a good day for us.  It's the first day that Nick is getting some sort of relief.  He's still in pain from mouth sores and has some stomach soreness, but said he feels "a little better than yesterday".  Thank you, Lord...and thank you all for your prayers.  Please, keep them coming.  Counts are starting to "trend" in the right direction.  Doctor's won't say the transplant was a success just yet, but by early next week..if counts are still going back up...we'll know for sure.  Here are the counts for Day 11, Day 12, and now Day 13:

 

Note:  If you have trouble sending a reply/message here on blogspot, please feel free to send Nick a message directly at Nick.Vojnovic@gmail.com.  Thank you all for your sweet words of encouragement and messages of inspiration.  They mean the world to us!  XO

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.