Nick meets his DONOR

What an beautiful evening!  After the mandatory one year wait, we were finally able to meet the incredible young woman who saved Nick's life!  Her name is Caroline and she is absolutely our HERO!  BeTheMatch set up the "meeting" during their national conference in Clearwater.  The whole family was present as we entered the room and watched a heart-felt video where Nick talked about his experience and what the Donor means to him.  Suddenly, the video cut to a message from Caroline, where she shares her experience as a stem cell Donor.  The moment we saw her face and heard her voice, the tears started rolling.  After the video, she was immediately introduced to Nick in person and just as you see in the photo, there simply are no words...

What do you say to a woman who, after joining the registry in college, received the call that she was a match and stepped up to give her blood stem cells so that Nick could live?  My heavens, he's a husband, a father, a brother, an uncle, a son, a friend, a boss, a co-worker, a neighbor, and the most loving person I've ever known.  We must have thanked Caroline a thousand times, but I admit that it still didn't seem adequate.  I can only hope that every time she looks down at the heart-shaped charm on the bracelet we gave her, she can hear our trembling voices saying, 

"We thank God for you."

 

(above) Nick, Caroline, and Dr Lia Perez (Moffitt Cancer Center) share a moment.

Nick and Caroline talk to the press and encourage all qualified potential

donors to join the Registry!

Day 365 "My Cup Runneth Over"

If there's a milestone to be remembered, it's today...Day 365 post transplant!  Nick continues to feel better and earlier this week, we had a full day at Moffitt including blood tests, pulmonary testing, a bone marrow biopsy, vaccinations, and doctor visit.  From the information we were given that same day, Nick is doing very well! 
I also have news to share about Nick's Donor.  We were told prior to transplant that BeTheMatch protects Donor/Recipient identity/privacy until after one year of the Recipient's survival. At that time, both parties can sign a waiver if they wish to be contacted by the other.  Needless to say, we have been anxious, but tried to remain patient as we waited to be notified.  This week we received the news (along with two cards from the Donor) that she does, in fact, want to meet Nick now that the one year "waiting period" is over!  BeTheMatch is now coordinating the "meeting" scheduled for the end of the month during the BeTheMatch annual conference in Clearwater.  It has not yet been completely confirmed, but we hope to meet her face to face at the event.  We will at least learn the identity of this amazing woman who stepped up to save a stranger!  She doesn't know it yet, but we already consider her an incredibly brave woman, a member of our family, and a true "hero" in every way.  Here's my sweet husband today, Day 365, relaxing and reading.  All I can say is..."my cup runneth over."

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!