Victory for Vayda
Donation protected
Every parent's worst nightmare is finding out their perfectly healthy child is all of a sudden faced with something that threatens that perfect bill of health, that threatens the relief after their birth that everything is fine, they're in the clear.
My beautiful friend Jess and her family's worst nightmare became a reality when their youngest daughter was only 7 months old. Vayda was eventually diagnosed with PMMTI which is a very rare cancer found in infants.
Anyone that has been faced with a medical condition for themselves or a loved one, knows the emotional and mental toll it can take. The elephant that is always sitting in the corner of the room, is the financial toll it takes on the family. In the midst of the storm, the question nags silently, "how are we ever going to be able to afford this?" The answer is usually, "I can't think about that right now, I need to focus on my family and praying we will get to the other side unscathed." This is where family, friends and communities can come together for support.
Despite Jess's insistence that they would figure it out on their own, I told her I wasn't asking permission but telling her I wanted to help. I am reaching out for the Huff family, to anyone that might be able to help support them in their fight for Vayda, in whatever form that support may be. More importantly, I hope this raises awareness for PMMTI and allows other parents to fight for a diagnosis when they know in their hearts, something is just not right.
Please read on to hear the fully story in Jess's words and where they are today.
Vayda Rose Huff was born a healthy and vibrant little redheaded beauty. The moment she was born, we couldn’t imagine our lives without her. Every day was full of joy watching Grayce and Vayda interact venturing through sisterhood right away. Vayda was flourishing and, without a doubt, was a healthy baby.
In late November 2018, we were all snuggling up on the couch to watch a movie and Vayda was laying cozy next to Daddy. Grayce grabbed for a blanket on the top of the couch and didn’t know our dog, Franco, was laying on top of it. When Grayce pulled the blanket, Franco fell onto the couch and bumped the top of Vayda’s head. A simple accident was all this was. Vayda cried for a few seconds and that was it. Grayce naturally felt horrible, but we reassured her that accidents happen and we just need to be extra careful!
As a result of the fall, there was a small “egg” bump on her head, which seemed normal. I knew we had her 2 month pediatrician appointment a few days later and we would have our pediatrician take a look to make sure all was well. We let her pediatrician know what took place and she reassured us it was just a little bump from the dog bumping her and it would go away. It was business as usual and a couple weeks had passed when I noticed the bump was still there. I brought her back in and her pediatrician evaluated it and said it was just a hematoma and would resolve on its own. 1 month later, the bump was still there. My concern grew and Vayda’s pediatrician chose to have a dermatologist evaluate the bump on Vayda’s head. The dermatologist wasn’t exactly sure why it wasn’t resolving and wanted to have an ultrasound done. The ultrasound results were that it was in fact a hematoma and the doctors agreed it would resolve on her own.
Not long after, I let her pediatrician know I felt like the bump was growing in size. She said it was probably because I see it everyday and to try to keep track of it just in case. I began to track it by taking photos and thought maybe I was just being paranoid.
I brought her in 1 month later when Vayda was 7 months old and let her know I was certain it was growing. She agreed to set up a consultation with a surgeon in Jacksonville, FL to give me peace of mind. I met with Dr Pak at Wolfson’s Children’s Hospital. He evaluated Vayda and said usually a hematoma will resolve on its own. In Vayda’s case, he felt something hard inside the bump and worried that there may have been some calcification taking place and that they would go ahead with surgery to drain the hematoma and remove this hard piece.
On May 9th 2019 Jeff, Grayce and myself brought Vayda in for surgery. As stressful and worrisome as that was for all of us, Vayda did amazingly well. Dr Pak told us that when he went to drain the hematoma, nothing came out. When they opened the bump up they found almost a mucus consistency blob. They pulled out everything they could and sent it to pathology. Dr Pak told me after he removed the tumor he told his team “Momtuition is a real thing. Vayda’s mom knew something wasn’t right and has been pushing for months”. I finally felt like someone was paying attention to the situation.
6 days later, Vayda and I returned to Wolfson’s to meet with Dr Pak to have the rubber band removed from her head (for pressure and proper healing) and chat about the pathology results. He told me that he was very pleased with how well Vayda recovered and how great her head looked. Dr Pak informed me that, to his surprise, what he removed on the 9th was actually a tumor.
A tumor? How could our 10lb dog bumping her head create a tumor? Dr Pak told me that the accident that took place in November was almost a blessing in disguise as that drew our attention to the area. The accident that took place had nothing to do with the tumor whatsoever. He also said that he looked at the ultrasound and did see that the tumor was in fact present, but it was very small and had been unseen. (I made sure to tell Grayce that if that hadn’t happened, we wouldn’t have known as soon as we did. She always felt like this “bump” was all her fault, even though we knew it wasn’t! She said she saved Sissy’s life!)
Dr Pak let me know that Wolfson’s pathology team had sent the tumor to Texas Children’s Hospital to evaluate the tissue further as they had never seen anything like this before. When I went to that appointment, I never expected to hear the word “tumor” and certainly wasn’t prepared for what was to come. My world began to crumble as I looked at my beautiful healthy baby girl. I had to put my strong mom pants on and moved forward.
As we were packing our house to move to Charleston, SC I received a call from Dr Pak. He was calling to let us know the results based on the pathologist’s finding at Texas Children’s Hospital. Dr Pak said they have diagnosed her tumor as PMMTI or primitive myxoid mesenchymal tumor of infancy. I had no idea what this meant at the time, all I knew was it wasn’t the news I was expecting.
PMMTI is a rare sarcoma/cancer and there are approximately 30 cases reported in medical literature reviews and counting. PMMTI has a very high local recurrence rate with a low metastatic potential. AKA it is known to come back after removal or treatment, but is not known to spread throughout the body.
Our world was spinning. How could this happen? Why was ths happening? Why to or perfect, beautiful daughter? Why Vayda? What do we do next? How can this be fixed?
The treatment was a wide local excision, meaning they would cut out the entire area that the tumor was touching and beyond to guarantee the tumor was completely removed from her head. We were all so lost and confused that we wanted more answers and understanding of PMMTI and what we were dealing with. Texas Children’s Hospital sent the tumor to St Jude Children’s Research Hospital to evaluate further and we received the same results and same treatment recommendation. When Vayda’s first surgery took place, the surgeon didn’t know he was going to be removing a tumor. Because of this, there were “negative margins” that still remained. This means that there was no certainty of the tumor in its entirety being removed or not.
In the middle being in a new city, in a newly purchased home, and trying to stabilize our family, we were being set up with new surgeons and a pediatric oncologist. Trying to remain calm for our daughters and continue working and keeping life as joyful and pleasant as can be, we moved forward in a flowing motion for Vayda’s health and best interest.
On August 3rd, 2019 we met with Vayda’s new surgeons at The Medical University of South Carolina; Dr Day and Dr Patel. We discussed the plan and options for Vayda. The following week we met with Vayda’s pediatric oncologist, Dr Hudspeth. Dr Hudspeth wanted to have further testing done. We had a CT scan and another ultrasound which looked great, according to the doctors, but surgery was still needed.
Vayda’s 2nd surgery was scheduled for October 29th at 13 months old. The surgeons removed the scar tissue down to the bone then removed 5 millimeters of tissue around the diameter which was immediately looked at by the pathologists. The pathologists found suspicious cells in that tissue and Dr Day let us know that it was a 50% chance or higher that the suspicious cells were the tumor/cancer. He recommended that we choose to remove an additional 5 millimeters to send out for testing as well. After almost 5 hours undergoing surgery, our baby girl was in our arms again. Vayda, being the resilient and strong girl that she is, began to recover immediately and all we had was faith and hope that results would be that the cancer was gone and this was her last surgery.
On November 6th, I received a call from Dr Day. He checked in on Vayda and told me the results were in. There was a great deal of tumor found in the tissue, all the way to Vayda’s skull. He told me another surgery is needed and we will discuss further on Monday.
We return to MUSC on November 11th to meet with Dr Day, Dr Patel and now a neurosurgeon that will need to be present during Vayda’s 3rd surgery.
As hard as it is to revisit each moment, it’s necessary in the healing process for me. This journey has been and will continue to be an emotional rollercoaster. It is very confusing to look at an otherwise beautiful, healthy, thriving Vayda girl and know that this is still going on. Vayda continues to reach milestones and grow as a tiny human each day. She is constantly blowing us away with her intelligence and silliness. If you’ve met her, chances are she’s made you smile with that big smile or adorable wave. She lights up the room with her presence alone. Even at the hospital she’s had the nurses and doctors in awe of her happiness and love of music, specifically Barbara Ann by the Beach Boys. Vayda is love and love is Vayda. Please keep Vayda Rose in your thoughts and prayers. We appreciate them more than you could ever imagine.
Our copay for each appointment is $50, each test copay is $500, and each surgery will vary, etc. We have been charged over $6,000 in pathology alone since the beginning and are at over $15,000 in medical bills so far, WITH insurance.
I find myself having to pull myself together for my family and our lives on a daily basis. I will fight for our daughter’s health and well being in every way and every step of the journey.
My beautiful friend Jess and her family's worst nightmare became a reality when their youngest daughter was only 7 months old. Vayda was eventually diagnosed with PMMTI which is a very rare cancer found in infants.
Anyone that has been faced with a medical condition for themselves or a loved one, knows the emotional and mental toll it can take. The elephant that is always sitting in the corner of the room, is the financial toll it takes on the family. In the midst of the storm, the question nags silently, "how are we ever going to be able to afford this?" The answer is usually, "I can't think about that right now, I need to focus on my family and praying we will get to the other side unscathed." This is where family, friends and communities can come together for support.
Despite Jess's insistence that they would figure it out on their own, I told her I wasn't asking permission but telling her I wanted to help. I am reaching out for the Huff family, to anyone that might be able to help support them in their fight for Vayda, in whatever form that support may be. More importantly, I hope this raises awareness for PMMTI and allows other parents to fight for a diagnosis when they know in their hearts, something is just not right.
Please read on to hear the fully story in Jess's words and where they are today.
Vayda Rose Huff was born a healthy and vibrant little redheaded beauty. The moment she was born, we couldn’t imagine our lives without her. Every day was full of joy watching Grayce and Vayda interact venturing through sisterhood right away. Vayda was flourishing and, without a doubt, was a healthy baby.
In late November 2018, we were all snuggling up on the couch to watch a movie and Vayda was laying cozy next to Daddy. Grayce grabbed for a blanket on the top of the couch and didn’t know our dog, Franco, was laying on top of it. When Grayce pulled the blanket, Franco fell onto the couch and bumped the top of Vayda’s head. A simple accident was all this was. Vayda cried for a few seconds and that was it. Grayce naturally felt horrible, but we reassured her that accidents happen and we just need to be extra careful!
As a result of the fall, there was a small “egg” bump on her head, which seemed normal. I knew we had her 2 month pediatrician appointment a few days later and we would have our pediatrician take a look to make sure all was well. We let her pediatrician know what took place and she reassured us it was just a little bump from the dog bumping her and it would go away. It was business as usual and a couple weeks had passed when I noticed the bump was still there. I brought her back in and her pediatrician evaluated it and said it was just a hematoma and would resolve on its own. 1 month later, the bump was still there. My concern grew and Vayda’s pediatrician chose to have a dermatologist evaluate the bump on Vayda’s head. The dermatologist wasn’t exactly sure why it wasn’t resolving and wanted to have an ultrasound done. The ultrasound results were that it was in fact a hematoma and the doctors agreed it would resolve on her own.
Not long after, I let her pediatrician know I felt like the bump was growing in size. She said it was probably because I see it everyday and to try to keep track of it just in case. I began to track it by taking photos and thought maybe I was just being paranoid.
I brought her in 1 month later when Vayda was 7 months old and let her know I was certain it was growing. She agreed to set up a consultation with a surgeon in Jacksonville, FL to give me peace of mind. I met with Dr Pak at Wolfson’s Children’s Hospital. He evaluated Vayda and said usually a hematoma will resolve on its own. In Vayda’s case, he felt something hard inside the bump and worried that there may have been some calcification taking place and that they would go ahead with surgery to drain the hematoma and remove this hard piece.
On May 9th 2019 Jeff, Grayce and myself brought Vayda in for surgery. As stressful and worrisome as that was for all of us, Vayda did amazingly well. Dr Pak told us that when he went to drain the hematoma, nothing came out. When they opened the bump up they found almost a mucus consistency blob. They pulled out everything they could and sent it to pathology. Dr Pak told me after he removed the tumor he told his team “Momtuition is a real thing. Vayda’s mom knew something wasn’t right and has been pushing for months”. I finally felt like someone was paying attention to the situation.
6 days later, Vayda and I returned to Wolfson’s to meet with Dr Pak to have the rubber band removed from her head (for pressure and proper healing) and chat about the pathology results. He told me that he was very pleased with how well Vayda recovered and how great her head looked. Dr Pak informed me that, to his surprise, what he removed on the 9th was actually a tumor.
A tumor? How could our 10lb dog bumping her head create a tumor? Dr Pak told me that the accident that took place in November was almost a blessing in disguise as that drew our attention to the area. The accident that took place had nothing to do with the tumor whatsoever. He also said that he looked at the ultrasound and did see that the tumor was in fact present, but it was very small and had been unseen. (I made sure to tell Grayce that if that hadn’t happened, we wouldn’t have known as soon as we did. She always felt like this “bump” was all her fault, even though we knew it wasn’t! She said she saved Sissy’s life!)
Dr Pak let me know that Wolfson’s pathology team had sent the tumor to Texas Children’s Hospital to evaluate the tissue further as they had never seen anything like this before. When I went to that appointment, I never expected to hear the word “tumor” and certainly wasn’t prepared for what was to come. My world began to crumble as I looked at my beautiful healthy baby girl. I had to put my strong mom pants on and moved forward.
As we were packing our house to move to Charleston, SC I received a call from Dr Pak. He was calling to let us know the results based on the pathologist’s finding at Texas Children’s Hospital. Dr Pak said they have diagnosed her tumor as PMMTI or primitive myxoid mesenchymal tumor of infancy. I had no idea what this meant at the time, all I knew was it wasn’t the news I was expecting.
PMMTI is a rare sarcoma/cancer and there are approximately 30 cases reported in medical literature reviews and counting. PMMTI has a very high local recurrence rate with a low metastatic potential. AKA it is known to come back after removal or treatment, but is not known to spread throughout the body.
Our world was spinning. How could this happen? Why was ths happening? Why to or perfect, beautiful daughter? Why Vayda? What do we do next? How can this be fixed?
The treatment was a wide local excision, meaning they would cut out the entire area that the tumor was touching and beyond to guarantee the tumor was completely removed from her head. We were all so lost and confused that we wanted more answers and understanding of PMMTI and what we were dealing with. Texas Children’s Hospital sent the tumor to St Jude Children’s Research Hospital to evaluate further and we received the same results and same treatment recommendation. When Vayda’s first surgery took place, the surgeon didn’t know he was going to be removing a tumor. Because of this, there were “negative margins” that still remained. This means that there was no certainty of the tumor in its entirety being removed or not.
In the middle being in a new city, in a newly purchased home, and trying to stabilize our family, we were being set up with new surgeons and a pediatric oncologist. Trying to remain calm for our daughters and continue working and keeping life as joyful and pleasant as can be, we moved forward in a flowing motion for Vayda’s health and best interest.
On August 3rd, 2019 we met with Vayda’s new surgeons at The Medical University of South Carolina; Dr Day and Dr Patel. We discussed the plan and options for Vayda. The following week we met with Vayda’s pediatric oncologist, Dr Hudspeth. Dr Hudspeth wanted to have further testing done. We had a CT scan and another ultrasound which looked great, according to the doctors, but surgery was still needed.
Vayda’s 2nd surgery was scheduled for October 29th at 13 months old. The surgeons removed the scar tissue down to the bone then removed 5 millimeters of tissue around the diameter which was immediately looked at by the pathologists. The pathologists found suspicious cells in that tissue and Dr Day let us know that it was a 50% chance or higher that the suspicious cells were the tumor/cancer. He recommended that we choose to remove an additional 5 millimeters to send out for testing as well. After almost 5 hours undergoing surgery, our baby girl was in our arms again. Vayda, being the resilient and strong girl that she is, began to recover immediately and all we had was faith and hope that results would be that the cancer was gone and this was her last surgery.
On November 6th, I received a call from Dr Day. He checked in on Vayda and told me the results were in. There was a great deal of tumor found in the tissue, all the way to Vayda’s skull. He told me another surgery is needed and we will discuss further on Monday.
We return to MUSC on November 11th to meet with Dr Day, Dr Patel and now a neurosurgeon that will need to be present during Vayda’s 3rd surgery.
As hard as it is to revisit each moment, it’s necessary in the healing process for me. This journey has been and will continue to be an emotional rollercoaster. It is very confusing to look at an otherwise beautiful, healthy, thriving Vayda girl and know that this is still going on. Vayda continues to reach milestones and grow as a tiny human each day. She is constantly blowing us away with her intelligence and silliness. If you’ve met her, chances are she’s made you smile with that big smile or adorable wave. She lights up the room with her presence alone. Even at the hospital she’s had the nurses and doctors in awe of her happiness and love of music, specifically Barbara Ann by the Beach Boys. Vayda is love and love is Vayda. Please keep Vayda Rose in your thoughts and prayers. We appreciate them more than you could ever imagine.
Our copay for each appointment is $50, each test copay is $500, and each surgery will vary, etc. We have been charged over $6,000 in pathology alone since the beginning and are at over $15,000 in medical bills so far, WITH insurance.
I find myself having to pull myself together for my family and our lives on a daily basis. I will fight for our daughter’s health and well being in every way and every step of the journey.
Organizer and beneficiary
Shareen Korndoerfer
Organizer
Fairport, NY
Jessica Huff
Beneficiary