Monday, December 26, 2016

Incredible News from BeTheMatch

We'd like to share some incredible news with all of you. Our son, Jon encouraged as many people as he knew to sign up on the BeTheMatch National Bone Marrow Registry in an attempt to help find Nick a match.  In doing so, one of his closest friends, Andy Lindberg enrolled.  Although he is not a match for Nick, we just learned that Andy IS a match for a 39 year old woman who has Multiple Myeloma (a cancer that forms in plasma cells/white blood cells).  He is currently undergoing the further blood testing to potentially donate blood stem cells.  Nick and I are in awe of Andy and all of the "20something" young people who have registered and are willing to save a life.  Just one month after enrolling on the registry, Andy has been matched and has agreed to step up.  I can assure you that he will make an incredible difference in the life of this recipient.  Thank you Andy!  We will be praying for you and the recipient as well.
BeTheMatch has reported that approximately 700 people have signed up on the registry due to our efforts for Nick.  It is so moving and we are truly grateful to all of you who continue to share Nick's story and add to the registry.
Update:  Nick is doing well.  Lauren & I are caring for his catheter and he visits Moffitt weekly for dressing changes and blood counts.  So far, so good.  No additional transfusions have been necessary to date.  We are in prep mode for the Jan 15th admission back into Moffitt for the transplant.
Nick wants to express his thanks for all of the cards, letters, and emails of support.  He says "it gives me strength to know that everyone is behind me on this journey.  Thank you so much for this."

Thursday, December 8, 2016

New BMT Admission Date

You people must have a direct line to heaven!  This afternoon Moffitt confirmed that Nick's donor is still a "go".  Bless this young soul!  The only negative is that she cannot donate until after the holidays, but we'll spend the next two weeks getting Nick over his cold anyway.
Moffitt has now scheduled Nick's admission date for January 15th with the BMT (transplant) taking place on January 20th,  He will be "self isolating" himself a bit to stay free of any additional virus/germs between now and then.  He'll also have to take it easy because the chest catheter must stay put.  Moffitt's Home Care team arrives tomorrow to teach us how to handle the daily care of the catheter to avoid infection.  I will continue to update you all on a weekly basis as Nick spends the next few weeks healing from his cold and visiting Moffitt to keep an eye on his blood counts.  
I know I will never find the words to thank you all enough for your prayers and well wishes to Nick.  We have been extremely moved by your display of pure love and we feel truly blessed.  Please continue to pray for Nick's healing and the safety of our sweet donor through the holiday season.
Wishing you God's Perfect Peace today & always,

Wednesday, December 7, 2016

Unexpected Delay

Tonight Nick was on the IV fluids which are given prior to the 9:00 pm chemotherapy, when a physician walked into the room and ordered a nasal swab because Nick had mentioned several times throughout the day that he did wake up with some nasal drainage/like the start of a cold.  The results came back at 8:45 pm and revealed that Nick has a rhinovirus (common cold).  Now, this would be no big deal for healthy people, but because of Nick's condition and considering they were about to completely break down his immune system, its a HUGE deal in this case.  The doctor explained that if they go through with the BMT (Bone Marrow Transplant), Nick will have an "added complication where the rhinovirus could turn into pneumonia".  This would be devastating to his chance at recovery.  The only other option is to wait two weeks and reschedule the BMT.  This is the option we felt was in Nick's best interest, so tonight we have returned home.  This unexpected delay was a real curve ball for us, but I believe God has directed what just happened here tonight.  I feel He may have just saved "My Knight".
At this point, Nick will be in a type of "isolation" for the next two weeks prior to the re-scheduled BMT.  He will be refraining from stores, crowds, young children, and basically anyone who may be sick with a cold/flu.  If he is "out and about", you will probably see him in a mask.  Tomorrow we are scheduled to meet with our BMT doctor to organize our next step.  I will be back to post our news, but until then, please continue to pray for Nick as well as his 22 year old donor.  This young woman has stepped up as donor, but she too is receiving a "curve ball" tonight.  Please pray that she continues to stay committed to donating stem cells for Nick.  Pray that Nick is healed of this virus and that he is able to complete the BMT process for a chance at being cured of Myelofibrosis.  My sincere thanks to all of you.  I know that your prayers for Nick's protection are being answered.  The doctor who appeared tonight (just before the chemo began) and caught Nick's cold is proof of it.
We'll be in touch soon.

Our Journey Begins

Well here we are.  Day 1.  We checked in at 1:00 today.  Nick was feeling a little nervous, but he was as optimistic as ever.  His brother, Greg called first thing this morning and shared a beautiful prayer as Nick sat, eyes closed and head bowed while balancing an ice bag pressed onto his incision site from the catheter procedure the day before.  The prayer was just what he needed to get the day started.  Thank you Greg!
After last minute packing and a quick puppy walk, we headed out to visit his Mom before making the short journey to Moffitt.  Nick told his Mother (who suffers from dementia) that he was going to be in the hospital for a while.  He further explained that Sandy (my sister) would be stopping by for weekly visits and his Mom responded, "That would be wonderful."  Nick promised to call and check in with her and she said, "That would be nice."  Nick's older brother, Denny will also be stopping through to visit their Mom this week, so I think Nick is finally at a place where he can focus on his transplant and recovery without such worry about who will "be there" for his Mom.  Thank you all for taking this responsibility off Nick's shoulders for a while.  It will surely give him strength for this battle he have begun.
The transition into Moffitt has gone smoothly thus far.  Many nurses and techs stopping through to gather information, clean Nick's catheter site, and run further tests.  Nick seems to be settling in and getting to know the staff...personally and by name of course!  Strong chemo (busulfan and flutarabine or "FluBu") will begin tonight and will be given the next 4 evenings. Nurses have already noted that fresh flowers are not accepted on the BMT floor, so cards, letters, email, and/or texts are the best way to wish him well.  For cards/letters, you can send them to our home and we'll deliver:
3424 Cypress Landing Drive, Valrico, FL  33596
or to send directly to the hospital:
Moffitt Cancer Center 12902 USF Magnolia Drive, c/o Nick Vojnovic Room 3717, Tampa, FL  33612

Triple Lumen Catheter Procedure

Yesterday - Dec 6, 2016
Nick had a catheter procedure to insert a triple lumen catheter into his chest.  This catheter will be used for all meds going in and blood draws being taken.  Fortunately it will avoid the zillion needle pricks.  Nick handled the procedure like a champ, but as expected I had to practically tie him down to keep from going right back to work.  Prior to the procedure, here he is doing what we all expect he would do...catching up with voice mail and return phone calls for Little Greek!