Victory 4 Vincent

11/01/2025

"It doesn't matter if you win or lose, it's what you do with your dancin' shoes." - Danny Zuko

Happy Halloween!

10/27/2025

On Friday Vincent participated in his school's move-a-thon for the 3rd year! He loved walking around the track with his teacher, who he absolutely adores. He was a little bit confused to see us there at his school because it isn't part of the routine, and he might have been worried that we were going to take him from his teacher. I feel like I am always emotional anymore, and yesterday was no exception, I teared up several times watching him walk around the track stomping his foot so happily. Imagining this scene seemed impossible just a few years ago. We didn't even know if he would be able to walk independently for a long time and now here he is walking laps at school. His school is really such a magical place and we are so, so lucky that Vincent is truly supported and loved there.

10/25/2025

Vincent really struggles at his opthamology exams and they are stressful appointments for all of us. This week, the mobile low vision clinic came to his school and in his familiar surroundings and with lots of support from his teacher, Vincent successfully completed the vision testing!!!

10/21/2025

Whenever I am asked if Vincent is in pain or experiencing any discomfort I always answer "I don't know". This photo of his toe is exactly why. I took Vincent's sock off yesterday to get him dressed and there was a string wrapped around his toe inside his sock. It's the kind of thing that happens with babies sometimes, when they are crying and you can't figure it out and then you take their sock off and bam! There's your answer. Except, Vincent didn't cry at all. He didn't even express discomfort. He woke up and played all morning like normal. I had no idea. When I took his sock off I immediately saw his toe and at first I thought the string was imbedded in his skin but thankfully it wasn't and hadn't broken the skin. He said it didn't hurt and it's not a booboo. Clearly it should have hurt. And this is why I really have no idea if he's ever in pain or not feeling good. Pain is our body's way of letting us know something is wrong. Shunt failures often cause headaches so we are always asked if he has headaches, we have no idea. What if I left him in his pajamas all day and didn't take his socks off? It is so scary when you're child can't communicate pain or if something is hurting them. If his stomach hurts or his throat is sore, we have no idea. It requires my constant hypervigilance in observing his physical and emotional state.

His inability to communicate pain or discomfort is complicated, it's not just his communication skills. He has left side hemiplegia so the left side of his body is partially paralyzed and he has less feeling on that side. He also has difficulty interpreting his body's internal sensations called interoception. He is working on his interoception and communication skills at school and he's made a lot of progress with their support. But, I am always worried I will miss something and this was a gut punch reminder that he doesn't feel pain the same way most people do and I will never be able to relax because of it.

10/14/2025

The start of Vincent's school year has been disrupted by his many quarterly medical appointments that happened to fall at the start of school. I'm not even sure if he made it to a full week of school until this past week. He also missed a day because he had a cough that I didn't like so I kept him home and took him to the pediatrician for a sick visit, which was triggering but also reassuring. It was the first time I called the pediatrician for a problem instead of calling oncology. The last time I called the pediatrician for him for a sick visit was when he was 3 months old which resulted in him being misdiagnosed with torticollis. I called knowing that if I wasn't happy with the response I could call the oncology clinic and they would see him. I was happy that they didn't hesitate to tell me to bring him in and we were seen quickly. I feel like I always have to be prepared to lay out my case for concern in a potential response to a medical professional brushing me off or thinking I'm over reacting. I immediately started rambling to the doctor that I thought he was ok but didn't like the way he sounded and it was Friday and I was worried that if something was going on in his lungs it would get worse and we would end up in the ER over the weekend and I need to do everything possible to avoid going to the ER. I was relieved that I was listened to, validated, Vincent was checked out and his lungs were clear, and I left feeling a little relieved. And thankfully, his cough went away without progressing into something worse.

He still loves school and went on 2 field trips recently, to the library and the post office! He also came to one of Mina’s volleyball games for the first time in over a year. It is really hard for him to stay regulated and it makes going places really challenging. We are so incredibly lucky that we have my mom who will stay with him so we can focus on Mina and not cause Vincent distress by dragging him to places that will be stressful for him. I do get a little lump in my throat when I see the other young siblings playing together. It can also feel like we live two lives, one as a family of 4 at home but a different life in public as a family of 3. It has been a strange year with Mina being at a new school and people not knowing about Vincent. It’s always awkward when someone asks me if I have any other kids and they never expect to hear that I have a disabled son who was diagnosed with brain cancer at 4 months old and also had lymphoma. It’s been a good year meeting new people outside of the childhood cancer world but also mentally challenging trying to figure out life beyond Vincent’s cancer. When I am sitting at a volleyball game thinking about how bad my back hurts on the bleachers, I try to remind myself that it is like sitting on a cloud compared to sitting in a hospital chair. And I am so thankful that I get to be sitting on the bleachers watching my daughter play volleyball while my son is sleeping at home in his bed and my mom watches tv in my living room. Seems so simple, but also a couple years ago that sentence seemed impossible.

10/11/2025

Upcoming local Blood Drive!!

Join us for the HEADstrong Foundation Blood Drive in memory of Nick Colleluori, hosted by the American Red Cross. Schedule your appointment using the link below!

📅 November 1, 2025
📍 Ridley Community Center
⏰ 8:30 AM – 1:30 PM

https://rcblood.org/46WfIDS

10/09/2025

Mina was nominated to be a candidate for Blood Cancer United (formerly LLS)Student Visionary of the Year. She will be working with her VP to create a team to raise money for blood cancer research. They recently pitched their cause, and why it's so personal for them, to fellow classmates during their activity fair. Keep an eye out for future ways to help!!

10/01/2025

On Friday night, Ramin and I attended the LIV like a Unicorn A Night To Have A Heart of Gold Gala. LIV Like a Unicorn has been a constant source of support for us over the past several years, and they are funding very critical pediatric brain cancer research. I had the privilege of speaking at the Gala and it was very important to me to share Vincent's story in a way that would honor Liv's life and legacy. I hope I did that. The people we met there were so kind and very generous. There was so much good in that room, and we are so grateful to LIV Like a Unicorn and everyone who supports them. You are making a real difference.

Today is the last day of Childhood Cancer Awareness month but just because the gold ribbons will fade from my feed doesn't mean I will stop raising awareness and advocating for action. It's a year round job for childhood cancer families, one that won't have a pay off for our children directly but it may benefit a child you love in the future. Cancer is the #1 disease killer of children. Why aren't we doing more to save their lives?

09/30/2025

Vincent felt better today. I think his "episode" yesterday was some type of heat related stress response. To avoid him getting overheated, we are usually very careful with how long he is outside when the weather is warm, which also makes going anywhere outdoors really hard. Yesterday I underestimated how strong the sun was going to be even that early and although it wasn't bad for most people, it was too much for Vincent.

Today he didn't go to school because he had a dentist appointment. These are rough for us all. The dentist is typically stressful vist for most kids but it is especially hard for kids who don't understand and have sensory and regulation challenges. He did do better than last time so that's a positive. But the development of his teeth and his gums were badly damaged from years of chemo so we need to go back again in 3 months to keep a close eye on things. Another side effect on the ever growing list.

09/29/2025

It was a beautiful morning watching the sun shine on almost 10,000 people walking together for the same cause. It's a powerful and bittersweet scene, it's seeing the support and hope mixed with the growing number of children being diagnosed. I hope there comes a day when we don't have to walk to fundraise, but walk to celebrate the end of childhood cancer.

Thank you to everyone who made a donation to our team, and an extra thank you to those who donated to Mina's page. She was the 3rd highest individual fundraiser for the event! We also raised over $10,000 which allows us to direct the funds to ATRT research and I was able to chat with Dr. Fischer, who is the head of neuro-oncology, about a paper they will be publishing soon that we have helped fund though our Parkway Run team each year. He also updated me on a new paper they are working on related to ATRT and secondary cancers. I love to hear about the research they are doing.

Mina and Ramin did the 5k run for the first time. Not me, I walked. But I'm proud of both of them and I think they have a new tradition. I will not be joining them.

Right at the end of the event when we were talking to some of Vincent's care team, I looked over at him in his chair and I knew that look. I immediately whipped out the puke bag, Vincent did not look good. He looked similar to the things we call "episodes" that he used to have. I think he was getting overheated. He can't regulate his body temperature and it was sunny and getting hotter as we walked. We quickly packed up and hurried to the car. Vincent wasn't feeling well for pretty much the rest of the day. He did seem more like himself later in the day. I was immediately triggered and I just hate this so much, we can never let our guard down because some medical emergency is always looming. I hope he feels ok in the morning.

05/06/2025

I didn't really know how critically important blood donation was until Vincent was diagnosed with brain cancer. And even in the beginning of treatment, I didn't realize that my child's life would actually depend on other human beings literally giving up their own blood (voluntarily) to save the lives of strangers. I didn't comprehend how easy it was to donate blood, but how few people actually did it. It's a true act of humanity and selflessness to donate blood. There is nothing in it for the donor. They don't even get the gratification of knowing who they helped and how, they just know that they helped someone somehow, and that is enough. I wish people could really understand that blood donation saves lives. It's not hyperbole.

I have sat and waited for hours, and even days a few times, holding Vincent while he slowly gets sicker and weaker while waiting for the blood products he needed because of shortages. The chemo that Vincent and a majority of kids with aggressive brain tumors receive are some of the most potent drugs out there and without blood and platelet transfusions they would die. Blood cancer patients, like Vincent's lymphoma, require many transfusions because of the disease itself and the treatment. Over the course of almost 7 years, Vincent has had over 100 blood infusions and that's not counting platelets.

It's a weird feeling to watch someone else's blood being pumped into your child's body. Sometimes you can literally watch the life return to them while the transfusion is running.

Because we truly know the need, we host a quarterly blood drive in Vincent’s honor. Our next one is this Thursday 5/8 at the Ridley Creekside Center 794 Milmont Ave. Swarthmore 2p - 7p. We still have a lot of openings, please sign up to save lives like Vincent's.

To sign up go to redcross . org and use sponsor code: Vincent

05/06/2025

Recently we did something that is so routine and simple for most kids but seemed like an unrealistic thing for Vincent.

He went to the pediatrician. A regular pediatrician, not an oncologist or other specialist. This was Vincent's first visit to the pediatrician since he was diagnosed at 4 months old. It was weird to walk into a well check with him and not into a doctor's office because something was wrong. And we had to meet a new pediatrician because our beloved pediatrician retired a couple years ago and never got to see Vincent again after she took the first action to save his life. I would keep her up to date on Vincent over the years when I saw her at Mina's appointments but I wish she could see him now. And I wish I could thank her again. Her wisdom and the steps she took for us on that day almost 7 years ago gave Vincent a fighting chance. Thank you Dr. Arem. I hope you are enjoying retirement.

Going back to the pediatrician was a hard and stressful decision. Vincent's oncologist has served as his primary care physician since he was 4 months old. He knows us. He knows me, knows how I am, knows how to support us when there are concerns. And I trust him. That's the biggest thing. I trust him to never brush off a concern and to always be honest with us. He knows I will always be concerned about cancer and he will take it seriously. And he will still continue to see Vincent for anything I feel he needs to be seen for because I'm really not ready to let anyone else run the show, but I did need to take the leap and establish his care with a pediatrician. I liked her. It went well. She spent close to 90 minutes talking to us. She was thorough, and she listened. Vincent has a pediatrician. So weird to write such a basic fact that, by itself, is not impressive because kids have pediatricians. But, for Vincent, it is another mountain moved.