I'm starting a blog about Nick's journey with Myelofibrosis. The title "My Knight Notes" was the closest I could come to describing who I am writing about and what I hope to accomplish here. Nick is truly "my knight" in shining armor. Those of you who know our history can attest to this. These "notes" or blog posts are simply my way of keeping everyone informed about Nick's progress through this journey. I suppose its best to start with Nick's story which is best summed up in our letter informing friends and family of his condition...
Dear Friends:
The time has come to share some difficult news with you and to ask for your prayers and support as we face one of life’s
most significant challenges. To explain, I must share Nick’s story to help you understand our situation and the type of
support we need at this critical time.
In 2001, Nick attended an event held by his dear friend and co-worker, Cormick McCarthy at the Valrico Beef O’Brady’s
to find stem cell/bone marrow donors for a little boy who had leukemia. Nick was asked to sign up on the National
Registry and submit a cheek swab for testing, which he gladly did. Although he was never called on to assist that
particular child, 5 yrs later, he did receive a letter by mail notifying him that he was “a match” for another person who
needed the donation. Nick agreed immediately and was asked to undergo further testing just prior to the donation.
During this detailed testing, he was notified that something was wrong with his own blood, so they could not accept his
donation. Unfortunately, at that time they could not identify what the problem was exactly.
Now, fast forward 10 years and 6 mos.
While giving blood at our general practitioner’s office for a routine physical, Nick was
notified again that “something is wrong with his blood results”. The physician sent Nick
to have more detailed blood tests with an Oncologist, where they finally discovered the
problem. Nick received the devastating news that day. He has myelofibrosis (a rare
form of bone marrow cancer, which leads to leukemia).
Now, you all know Nick. He has already been seen by many of the top specialists in the
field. Currently he has a local physician at Moffitt and he has been on a “trial” at M.D.
Anderson in Houston the last three months. Nick elected to do the trial for two reasons;
1) To make a difference in the life of others with the disease with hope that they
will discover treatments and cures in the study of myeloproliferative neoplasms
for future people who find themselves in his shoes, and 2) To try and postpone a transplant (brutal on the body and has frightening mortality
statistics) even though it’s the only cure.
Unfortunately we have come to a place where after Nick’s first blood transfusion, both doctors agree that the transplant
must be done now before he becomes transfusion dependent and/or his myelofibrosis becomes full blown AML (Acute
Myeloid Leukemia). Nick’s transplant is tentatively scheduled for the first week of January. Currently, we have only one
potential unrelated match, however we don’t know if she is willing or able to help us.
Here’s where we need your help! We need as many people between the ages of 18-44 to register as a bone marrow/stem
cell donor on the National Registry (just like Nick did 10 years ago). If you are a match, you are able to say “yes” or “no”
if you are ever called to donate. In Nick’s case, if you are a match, you would be donating as a Peripheral Blood Stem
Cell (PBSC) donor. It is a non-surgical procedure and similar to that of donating blood platelets. You can sign up on the
National Registry at join.bethematch.org/FL If you are not an 18-44 candidate, PLEASE share our news and ASSIST
EVERYONE YOU KNOW who is in this age group to complete the process quickly. Nick is currently working with
BeTheMatch Florida Recruiter who is willing to go to larger events (Little Greek sites, FGCU, etc.), but if you can do it
now, PLEASE do! For Nick, time is of the essence. The website will walk you through the simple process of sign up
and then testing (cheek swab).
Please accept my most sincere thanks for your help in advance. I know that you all love Nick almost as much as I do
and I know you’ll do whatever you can to help find a confirmed “match” for him. Basically, the better the match, the
better chance Nick has to make it through the transplant without extreme GVH (Graft vs Host Disease) or other serious
complications. I will be setting up a blog to report Nick’s progress along this very long journey we have ahead of us so
that you can track his progress. I’ll forward how to log in once I set it up. Right now, we’ve got to focus on finding a
confirmed donor match.
Lastly, I’m sure you’re wondering how we are dealing with this emotionally and how we’ve handled it the last six months.
Everyone knows that Nick is naturally an extremely upbeat and positive person, but I must tell you that this has been
quite a blow. It was a hit that he never saw coming, primarily because he is mostly asymptomatic (just a slightly enlarged
spleen and a bit of anemia). It wasn’t until we watched his hemoglobin drop, blasts increase, and transfusions being
scheduled that we realized that this is really happening. With Jon & Brittany now happily married one year, and Lauren’s
first year off to college at FGCU, I suppose Nick and I are taking it day by day and just holding each other a little tighter.
We’ve learned to face each weekly blood test together. We’ve cried together and prayed together. We’ve tried to keep
busy and educate ourselves as much as possible. Although sometimes it feels like the world is spinning out of control,
we know that God will provide every blessing to him. God knows Nick’s heart and I often think that maybe this is actually
a lesson for the rest of us. Maybe we need to be a little more kind, share a little more genuine love, and be a little more
patient with each other, just as Nick has always been toward each one of us. Anyway, I ask you to join my family as we
pray hard and hold on to each other – for dear life. Let’s weather this incredible storm together.
God’s Perfect Peace,
Rene’ Vojnovic
