Victory 4 Vincent

11/27/2025

Vincent has been doing so well and is absolutely thriving in his class at school. The progress he's made since the beginning of the year is really impressive. His language skills alone have exploded and I can literally see his mind working as he's talking and thinking about what he is saying. His IEP meeting is next week so he has been going through lots of evaluations at school and he also had his 2 year neuro-psychology evaluation. It is overwhelming, for him and me. I laugh and cry as I read through his evaluation reports. I kind of feel like I am free falling through the intricacies of the special education system, but Vincent’s school has been like a peace of mind parachute slowing down the fall enough so I don't feel like panicking. I have so much to learn. But I am so tired of having to become an expert in every system to ensure Vincent is getting everything he needs. I am so grateful for his school. And so is he. Vincent loves school.

This is the first cold & flu season we are going into without Vincent having a port and I can not explain the feeling of relief to not have to worry about rushing to the ER within 30 minutes of a fever. Even when he didn't have a fever, every sniffle or cough or weird look would send my entire nervous system into panic worrying that a fever and ER trip were inevitable. Don't get me wrong I still worry about everything, but the gnawing pit of dread isn't automatically triggered in my gut now because a fever doesn't mean we have to go to the ER.

Vincent does have a head cold right now, and I am so thankful on this Thanksgiving eve to not be going to bed worried about a middle of the night on a holiday ER run.

Enjoy Vincent's 2nd grade school photos!

11/17/2025

There are lots of children left on Kisses For Kyle's Holiday Gift Program list, including Mina. Please select a gift for a child with cancer or their siblings. 💛

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.