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Victory 4 Vincent, P. O. Box 250, Prospect Park, PA (2025)

09/03/2025

This morning Vincent was eager to get ready and even skipped some of the smaller or newer parts of his routine. He was so excited that he was going to school today. He said he was going to "have so much fun with" and proceeded to list the names of his classmates, teacher, and para-professionals. The whole way to school he kept asking where we were going like he was making sure that school was still our destination.

As I sat waiting in the drop off circle, I thought back to the first day I dropped him off at school and how scared I was to hand him over to strangers. Today I had absolutely no hesitation. School makes him happy. He is thriving there. And he is starting second grade!! Well, technically, his classroom isn't a "grade" but it is his second grade year of school. He gets to go to second grade!

7 years ago, actually even just 3 years ago, I didn't even think he would get to go to Kindergarten let alone second grade. But here we are, another miracle for Vincent. I am so grateful for every day, every new experience, every thing he gets to do.

And next year I need to remember to trade the chalk sign for the letterboard.

09/01/2025

Thinking back to 7 years ago when Vincent was first diagnosed with cancer, I can remember not only being in complete shock that my infant had brain cancer but also being shocked over and over again as I Iearned the realities of childhood cancer. Not just the unbelievable reality that this was happening to me, to my baby, my family but the sad truth that I was wrong to assume we (society, government) were doing more. I don't think it was unreasonable for me to assume that we were doing more to find cures for the #1 disease killer of children, because we should be. But I was wrong. Being told your child has cancer is horrible, but as those words tumble out you immediately move to thinking about treatment options and survival rates. When they told me there was no standardized treatment for ATRT and laid out the statistics, I couldn't believe it. I thought, what is wrong with us as a society that we aren't prioritizing our children. That answer is fairly easy to figure out. Money. Funding, or lack of funding. Childhood cancer cures rely on research primarily funded by the government and non-profit organizations. But the government isn't putting kids first. Instead kids are selling lemonade to save their friends and parents are screaming for help to save our babies.

Most people live with the false perception that things like your kid getting cancer only happen to other people. As I scrolled through my social media feed today and saw all the Go Gold posts, I realized that almost every single post was from a childhood cancer parent I've met over the past 7 years and I'm sure that not one of them ever thought it would be their child.

It's September, and Childhood Cancer Awareness Month. I don't know what I can say that I haven't said over the years and most times it feels like I am screaming into a void. But I will keep screaming, because Vincent and every child is worth more than the people in power think they are.

Go Gold. Wear a gold ribbon. Share Vincent's story or another child's story. Make a donation to childhood cancer research. Don't wait until it's a child you know, like I did.

08/28/2025

We are still hoping to gift more Brave Gowns to the kids at CHOP. All the kids love them, and they make everyone smile!

See comments for 🔗 to gift-a-gown.

08/27/2025

Today I made the mistake of talking about going back to school in front of Vincent. He heard "go to school" and immediately said "yes, I want to go to school". We were getting ready to eat lunch and he kept saying "first, we eat lunch, then we go to school". Vincent doesn’t understand time concepts. I never realized how impossible it is to explain the perception of time to someone. Vincent literally lives in the moment, which can be great in a lot of ways but it is also very challenging when he has to wait for something. He does do well waiting short periods with a visual timer for daily tasks or activities, he will repeat "when the timer goes off, then we can......(fill in the blank)..... So he wasn't super happy when I kept telling him that we were not going to school today but that he would go back to school next week. He doesn't understand what summer break is so he's probably confused as to why he isn't going to school. He loves school, thrives on the routine, and gets to be with peers. I have always wished for a few more dog days of summer when the new school year was starting, but I don't anymore. It's different when you have a child with high support needs and know how much they need their routine and consistency.

Mina, however, starts her sophomore year tomorrow. I wish I could slow down time with her. It's crazy to think she was in 3rd grade when Vincent was diagnosed. And now, 10th grade already. It is such a privilege to get to watch her grow up.

As kids are heading back to school, I am thinking of all my friends and the parents who are not getting to load up backpacks and make lunches. I wish I could hug you all.

08/21/2025

The CHOP Parkway Run is the largest fundraiser for childhood cancer research at Children's Hospital of Philadelphia. This is our 8th year participating in the Parkway Run, because we know how critical this funding is to make progress in childhood cancer treatment and outcomes. CHOP is a world leader of breakthroughs in childhood cancer research and we are so grateful for the important work they do.

There's a motto at CHOP, "hope lives here" and it most certainly does.

Please consider joining us on Sept 28th in-person on the Parkway (or virtually), make a donation to our team, and purchase a shirt to support Vincent & CHOP!

See comments for links.

Please share!!

08/16/2025

Six years ago today, Vincent received his stem cell transplant. The process was surprisingly underwhelming. As the doctor pushed the syringe full of stem cells into his line, the room smelled like creamed corn. He was 14 months old. He threw up during the first syringe push, and we decided to split the infusion into two days and push the second syringe the next day. This morning, as we were heading out of his room, he pointed to a wooden toy train on his dresser and said he wanted to bring it downstairs. We brought it with us, and Vincent played with it most of the day.

After looking at my Facebook memories from today, I realized that today was his transplant day, and I was reminded that he also received that wooden train today, six years ago. It was a gift he received in the hospital that had been hand-carved by one of his transplant doctor's father. It has sat on his dresser ever since we were discharged after his transplant. He randomly asks to take it downstairs to play with it, but not frequently. Today, he picked the train, six years to the day he received it along with his new cells. 💛

08/15/2025

Summer is just flying by over here.

Vincent's Extended School Year program ended 2 weeks ago. He had a blast doing so many fun activities with his classmates. I know I say it all the time but he really does love school. And they love him. He already misses it and asks everyday "where are we going?" then answers himself "we are going to school" and he doesn’t like when I remind him that school is on break and we can't go today.

He's had several appointments at CHOP over the summer and something really exciting happened at the oncology clinic. Vincent has an extremely difficult time playing with or near other kids and playing together with peers and sharing/ turn taking has been a big focus in school. The oncology playroom is a stressful place for me instead of being a fun place because of the high level of support Vincent needs to be in there with other kids. But, at his last appointment he played so well with two other little boys in the playroom. It was so amazing to see him take turns, share, and be ok with other kids in his space touching things without him becoming upset. That might not sound like such a big thing, but I know there are a lot of parents out there who get it.

We went to the shore for vacation last week and Vincent had a blast swimming in the pool again. He is swimming around the pool independently (in his life jacket) and loving feeling free in the water. He loves to spin and he can do it so easily in the pool, and it makes him so happy. If the humidity at home would ease up I would take him to our local swim club, but his body can only handle the heat for very short periods and the pool does nothing for relieving humidity.

Mina has been working hard all summer to prepare for high school volleyball try outs. Her school's volleyball program is one of the top in the state and it's tough. Try outs are such a stressful time for the kids, and the parents too. This was try out week, it was intense and competitive and I couldn't wait for it to be over. I wanted to throw up from anxiety waiting for her to open her letter, so I can imagine how she felt. I am so happy for her that I can share that she made the Varsity team! I am so proud of her commitment and can't wait to watch her continue to grow in the sport she loves. She starts her sophmore year in just a few weeks. I can't believe it. She was in 3rd grade when Vincent was diagnosed and now she's a sophmore!

September is around the corner, Childhood Cancer Awareness Month, the Parkway Run, & Vincent's scans. Please consider joining us at the Parkway Run on September 28th ( in-person or virtually) or make a donation to help us find cures for childhood cancer. See comments for link.

And please keep praying for Vincent to be cancer free, now and forever.

08/09/2025

A couple of weeks ago, Vincent's class hosted a lemonade stand at school to raise money for Life Rolls On (the program he just surfed with). Vincent helped manage the money, and he even chose to taste the lemonade! In the photo you can see the picture board he used to make his choice. Visual aids are really helpful to Vincent.

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.

Victory 4 Vincent

09/03/2025

09/01/2025

08/28/2025

08/27/2025

08/21/2025

08/16/2025

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