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."
Monday, December 26, 2016
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,
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.
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
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!
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!
Tuesday, November 15, 2016
Donor Cleared and Scheduled
I must thank each and every one of you for your prayers and work to add donors to the BeTheMatch.org/Nick Vojnovic National Registry. Please never cease from either. Your prayers are being answered and every person added to the BMT donor list could save a life!
My news today is that Nick's "potential" donor has now been officially cleared to donate for Nick. All we know about the donor is that she is a 22 year old female and a 10/10 match to his HLA. She is scheduled to donate blood stem cells on December 12th and Nick is scheduled to be transplanted on December 13th. This week he is undergoing four days of testing and will undergo many other appointments in preparation for the Bone Marrow Transplant (BMT), but this is incredible news for us. Please continue to pray...your prayers are being answered!
XO
Rene'
The Start of a Blog and a Journey
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
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
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