Victory 4 Vincent

06/20/2026

We found out Vincent had tumors in his brain 8 years ago today. 7 years ago I wrote the post below where I shared what happened that day and I'm sharing it again today on the 8 year anniversary of his diagnosis 👇

"On June 19, 2018 we woke up excited for the start of summer. I took Vincent for his PT appointment for torticollis that morning and later that afternoon he had his 4 month well check. That night Mina had a playoff softball game. Ramin came to the pediatrician appointment with us to hear what she said about the "torticollis". I remember thinking that we needed to see an orthopedic doctor and telling our pediatrician why. She asked us lots of questions and agreed that something else was going on. She explained that she was concerned because Vincent's head circumference had increased from around the 60th percentile to the 100th percentile and I thought that wasn't a big deal because Mina has a big head too (literally she wears the same size bike helmet as I do) but then she informed us that it wasn't his head size that was concerning, it was the rate it had increased since his 2 month well check. She told us she wanted us to take him for a consult with CHOP neurology and to call them to schedule an appointment and once I did to call her back so she could try to get it moved up (she knew an initial consult would take weeks to get in). We left, I called CHOP neuro and make an appointment for almost 2 months later. I called my pediatrician and told her when the appointment was and she said she would call to see if they could get us in earlier. This whole time I am still oblivious to the urgency of the situation because our pediatrician knew how anxious I am and she handled everything amazingly. If I had known we were going to CHOP for something as serious as a brain tumor I would have went there a totally different person who was losing her mind.

About 15 minutes after I hang up with our pediatrician, I get a call from CHOP neuro who says "we have an opening today at 5pm, can you come?" I hesitated and asked Ramin what we should do because Mina had a playoff softball game, we agreed to have my mom take her and meet them there after. It was 4:15pm on a Tuesday in rush hour and we live 15 minutes from CHOP with no traffic. I didn't think we would make it by 5pm but they said they would wait. Unbelievably, we made it there, parked & navigated this foreign hospital in 20 minutes. On our way there, I googled the name of the neurologist we were seeing... Dr. Banwell, wow she's the head of neurology I thought, how lucky are we that she had an opening tonight. How naive.

We were called back into an exam room, I was nursing Vincent and after awhile a man came in introduced himself as Brian and said he was a fellow. Then he said "do you know why you're here?" And in that instant, Ramin and I looked at each other with the horrific realization that something was really wrong. We were asked a flurry of questions to which none of our answers made sense... is he vomiting? No. Is he having seizures? No. Is he hard to wake up or lethargic? No. Are you sure? Yes! I nurse him 20 times a day I would know if he was vomiting or seizing. I start to try to decode what they are saying about Vincent's fontanelle and what it sounds like.... I don't recall the word but it reminded me of a bubbling creek.... I started googling and decided they were concerned about hydrocephalus. Ok hydrocephalus, I'm familiar with that. I worked with kids with hydrocephalus during my internship at Temple Children's. He probably needs a shunt.

Then we are told he needs an MRI tonight but since he was nursing he couldn't be put under anesthesia so he had to have a rapid MRI in the ER. And we realized we weren't making Mina's playoff game. The head of neurology personally walked us to the ER and made sure they took care of us right away. Vincent was taken back for the MRI and we were left alone to wait. He came back and I wanted to nurse but they said not to until we had the MRI results.

Finally the doctor came in and shattered our world with the words "the MRI was abnormal, your son has masses in his brain. He needs to be admitted to the PICU and someone from neurosurgery will be in to talk to you". Wait, what? I couldn't breathe.... masses? More than 1? How many 3, 7, 10? Ramin took Vincent as I lost my mind in a state of panic. I didn't really believe it. Someone from neurosurgery came in and pulled up the scans for us to see. I don't really know what I'm looking at on MRIs most of the time but when I saw my sons brain MRI I knew it wasn't right. I thought, how can this be my sons brain? He's fine. I think this is a mistake. Denial. Shock. Anger. Panic. Fear. It all just kept hitting me.

We were admitted and transferred to the PICU where we had a shared room and a nightmare roommate as we processed this information and prepared for emergency brain surgery on our 4 month old the next morning. We had no idea we wouldn't be returning home that night. We weren't prepared for a hospital stay. We had to tell Mina. We had to tell our family. I had to tell my mom. My mom, I have been worried about her health for years and now I had to tell her that her baby grandson had brain tumors. I was scared about her blood pressure and anxiety. I wanted to protect her too. But I was helpless. I couldn't protect anyone. I had no control.

That day turned into a months long hospital stay and once he was finally discharged, he had 2 days home before getting admitted again. He has spent almost 150 nights in the hospital, endured 10 rounds of harsh chemotherapy, countless pokes, scans, lumbar punctures, electrolyte infusions, blood & platelet transfusions, anesthesia, and other procedures including 6 brain surgeries and being on a ventilator several times during these past 12 months. This past year has been hard, actually there is no word that exists to describe what it has been like. But Vincent is still here, defying the odds and thriving. We would not have made it through this past year without the support of our family, friends, community, medical team, nurses, strangers, and every single one of you."

8 years later and we still couldn't do it without your continued support 💛

06/14/2026

Friday was Vincent's last day of SECOND GRADE!!! Another miracle milestone for my boy! He had a great school year and made so much progress in all areas. He started working with a reading specialist this year which is huge and something I hadn't expected. He's gone on lots of field trips into the community, which he loves to do. He tells me almost daily that he wants to go in the van on a field trip. He is so well cared for at school and I am so grateful for his teacher and his entire team there.

He will go back to school in July for Extended School Year, but I honestly wish he went to school year round. His routine gets so messed up and he is more dysregulated when he isn't at school for weeks. It's not easy for Vincent to have lazy or spontaneous summer days. Summer break isn't the same for him as it is for most kids. School is his main opportunity to be around peers and I know he will miss his classmates. He doesn't even realize he's not going back tomorrow, or that tomorrow is Monday but after a few days of not going he's going to start saying he wants to go to school. I know that most parents of kids with autism or intellectual disabilities probably relate to wishing school was year round.

Mina finished her school year last week. I can't believe she's halfway through high school and we are starting the college search! She has had a good year all around. Her report card isn't out yet but I expect she will have distinguished honors based on her grades throughout the semester. Last month we attended the Carson Scholars Banquet where she was officially recognized as a 2026 Carson Scholar! She left for camp today and she has a busy summer planned that includes her first part-time job! And, of course, lots of volleyball and conditioning.

I am so proud of both of my kids and their accomplishments, which look very different but are equally impressive.

I'm hoping for a medical drama free summer filled with fun and making memories.

06/05/2026

I am so incredibly grateful to share that all of Vincent's scans are stable!

Thank you for all the prayers & love 💛

06/02/2026

Tomorrow Vincent will go under anesthesia for his 54th brain & spine MRI. Please send all the love and prayers for stable scans and no cancer.

05/29/2026

May has been a lot. We are heartbroken over the loss of our sweet friend Ollie. The longest survivor of ATRT that we are aware of has relapsed after being cancer free for almost 20 years. Another boy we know who had ATRT and took the same inhibitor that caused Vincent's secondary lymphoma, has also just been diagnosed with secondary lymphoma. I've had 4 parents of kids with newly diagnosed ATRT reach out to me in the past 2 weeks. There have been several kids who have relapsed recently and their parents are desperately scrambling for options. It's hard to not think about it. And with Vincent's next set of scans just a week away, it's even harder. He's also suddenly not been sleeping and his walking has been more unsteady.

And then there is the lymphoma, as if aggressive brain cancer isn't enough to worry about, let's throw in aggressive blood cancer. My level of hypervigilance is insane.

Vincent has had petechiae over the past few weeks. In weird places. About a month ago I noticed it on his neck, where his seat belt would rub. Then I saw it on his thigh and chest , where he slaps himself out of excitement. Then I took his blood pressure to monitor a side effect of another medication and the cuff left petechiae in a perfect circular cuff pattern. That was it. I needed labs. I started to spiral. We made a trip to the oncology clinic. His labs looked ok. No explanation for the petechiae. And very little piece of mind for me because his labs looked fine when he had a 9 cm mediastinal mass too.

I'm having a lot of scanxiety, more than usual. Or maybe it always feels like more than usual when I'm in it. 8 years, 54 MRI's and it never gets easier.

Please keep praying, sending good vibes, and helping us manifest a miracle for Vincent. Cancer free, now and forever.

05/02/2026

It's May. It's brain tumor awareness month for the world, but for our family every day is brain tumor awareness day. We are aware every day what this disease has stolen from Vincent and our family, and we are aware of how fragile our future is.

We are aware of all the children who have died from this disease and we are aware that Vincent is just about the last child alive out of the ones who started their fights alongside us 8 years ago. We straddle the divide of fear and hope multiple times a day. Too often fear feels rational and hope feels impossible. And one would think that the longer Vincent survives, the easier it would be to see the passion of possibility but the truth is the more time that passes the more we learn that we know nothing. There was a naivety in the early years that made it a little easier. Now we know nothing, and we know too much.

At 4 months old and with no symptoms other than a slight head tilt that only I could see, this was Vincent's brain. Every time I see this, I am in shock and disbelief and right back in that ER room being told my infant had tumors in his brain.

8 years ago I never thought about brain tumors and then June 19th, 2018 happened and I never stopped thinking about them.

04/30/2026

My heart breaks for every single child our ATRT community loses to this vicious disease.

But losing Ollie is different.

We had the honor of knowing and loving Ollie for the past 7 years. And his mom has been my closest friend in the oncology community, we have been each other's sounding board for years.

We are crushed.

Please keep Ollie's family and everyone who loves him in your hearts and prayers.

We love you, Ollie. Forever and ever.

Our heart, soul and inspiration, Oliver David Horn, who we affectionately called Ollie died at home, in his bed with his mom and dad next to him on April 29, 2026. Ollie was born on July 11, 2018, right in the middle of Rachel and Max’s birthdays. From birth, Ollie was always a bright, sunny child. He rarely cried unless he was hungry, never ever napped and had a complete adoration for books from a young age. His favorites included the Hungry Caterpillar, Jamberry, Caps for Sale, the Little Blue Truck and many more. Ollie loved to smile.

When Ollie was 9 months old, he was diagnosed with a rare and aggressive cancer of the brain and spine, AT/RT. Despite a dismal prognosis, Ollie defied every odd for over 7 years. He was a unicorn and forged his own path. The treatment for his cancer was so aggressive that it left him with many disabilities, yet that never stopped Ollie. He fought for the abilities many take for granted. Every new skill he gained, every new word he signed was always celebrated by himself and all of us around him who loved him. He worked hard and was proud of all he accomplished.

Ollie gave us 5 years of stability, something that was very much not expected when he suffered his third relapse in 2021. Despite all the odds Ollie enjoyed five magical years. He went to school, took weekly horseback riding lessons, enjoyed swimming and tried skiing. Most importantly, he had the chance to make amazing memories with his 3 little brothers, Benji, Miles and Levi. His brothers were the love of his life.

The other great love of Ollie’s life was music. Ollie especially loved the cello, with Bach being an absolute favorite. His legacy and the joy he found in music lives on with Ollie’s Orchestra. The nonprofit has gifted children and adolescents impacted by cancer with musical instruments and education.

Ollie is survived by his parents, Rachel Krieger and Max Horn, his brothers Benjamin, Levi and Miles and his cat Luna. He showed everyone he met how to enjoy life. He never complained about his challenges and instead taught us all to cherish life. Ollie is forever loved.

Funeral arrangements 💔

https://obits.goldsteinsfuneral.com/oliver-horn

04/29/2026

My niece got married on Saturday and both Mina and Vincent were in the wedding. We were all very skeptical that Vincent would walk down the aisle on cue and without getting distracted, and that would have been completely OK, but he surprised us again. He held onto Mina's hand repeating aloud "waiting for Vincent's turn" until it was their turn and then he triumphantly marched down the aisle with his signature right footed stomp while proudly gripping Mina's hand. It was a magical moment to witness. Mina looked gorgeous, Vincent was dapper in his suit, and my niece was absolutely stunning. You could feel the love radiating in the room. Thank you to my niece, and new nephew for including my kids in your special day, thereby gifting me with a very precious moment and memory.

Love your people ❤️

04/24/2026

Vincent riding an adaptive tricycle for the first time! This is a huge milestone. And he's using lefty hand too!!

Go Vincent!

03/19/2026

Vincent had a blast on another school field trip! We are so grateful for these experiences.