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.