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.