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.