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