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!

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."