Victory 4 Vincent

12/14/2025

I don't like to give updates when I don't have all of the information to process but so many of you are reaching out and asking about his scan that I will just say it.

Vincent's brain, spine, kidneys, bladder, & thyroid are stable. Thank God.

But, there is a lung nodule that is taking up contrast and the report recommends a lung CT scan. I know everyone is going to want to sugarcoat it and say it's fine, it could be x,y,z and yes it could be. But Vincent has rhabdoid Tumor Predisposition Syndrome and the lungs are not an uncommon site for rhabdoid tumors, so this is a seriously scary finding. On top of that he had lymphoma that presented in his mediastinum, the cavity that separates your lungs from the rest of your chest. So yea, I'm really trying hard not to panic but it's pretty much impossible. And all we can do right now is a big fat nothing, nothing at all but to wait until Monday when I can get on the phone to make the calls to start doing something.

Please, please keep Vincent in your prayers, send him good vibes, positive energy, and loving thoughts. Pray like he is yours.

12/12/2025

Tonight The Delco Group is throwing a Christmas Party and you're invited. You just need to bring toys for the Sassy Massey Toy Drive which provides toys to support children who are hospitalized.

🎅 Meet Santa and his reindeer
😈 Keep an eye out for the Grinch
🎶 DJ, rides, entertainment
🍔 Food & drinks for kids and adults

📍 777 W. Sproul Lane, Springfield
🕓 Party starts at 4PM

Do your thing Delco!

12/11/2025

Still nothing. No report.

Making oncology parents wait this long for scan results should be considered cruel and unusual punishment.

Tomorrow Vincent has his kidney and neck ultrasounds. I will probably get those results before his MRI results.

Please let everything be stable.

*photo from Vincent's school field trip

12/10/2025

I have no results, and I don't expect to have them anytime soon because Vincent's oncologist let me know that radiology has been really behind on reading scans and finalizing the reports. Like DAYS behind! It is extremely frustrating to watch the changes in the healthcare system over the past 7 years, and not for the better. I could get way up high on my soapbox about it but I don't have the energy to scream into the void.

Vincent's start time was later than I like today, but he handled everything well and only asked for milk once. We walked into the MRI area and for the first time in forever, there was not 1 familiar face. I didn't like it. I don't think our nurse was a regular in MRI and the entire vibe just felt off today. I didn't like it. The scan seemed to take longer than usual and we passed the 3 hour mark in the waiting room before being called back.

This was Vincent's 52nd MRI and probably 200th time going under anesthesia. People tend to take going under anesthesia like it's not a big deal, but it is, every time. Vincent has never had a problem recovering from anesthesia. Until today.

Less than 10 minutes after we walked into his recovery room his airway obstructed, the nurse called a code, and 5 nurses and the anesthesiologist came running into the room and I quickly slipped out the door. I stood there for several minutes listening to them trying to get him breathing with my back to the door, every few seconds I would peek in at Ramin who would tell me everything I needed to know with his eyes. I think I held my breath the entire time praying that he did not need to be intubated. A nurse asked if I needed a chair, I calmly replied that "no I was fine, this isn't a big deal we've dealt with worse". If she believed me, maybe I would believe it too. I finally locked eyes with Ramin and knew it was ok, Vincent was ok, he was breathing. Yes, it was a minor situation in comparison to many of the things we have been through but the fear and the risk were the same in those moments. Vincent is fine. He was back to himself in no time.

Now we wait, the hardest part. And pray that we get stable results with no concerns. Cancer free, now and forever.

12/09/2025

Tomorrow Vincent will go under anesthesia again for his 52nd brain & spine MRI.

Please pray that everything is stable, there are no concerns, and we are gifted another 3 months in-between scans. I'm hoping results do not take as long as they did last time.

My sweet boy is doing so amazing, finally living a childhood he fought so hard for. Please God don't take it away.

12/05/2025

I'm always somewhat hesitant to make a post sharing that things are going well for Vincent. Like putting it out there in the universe is a surefire way for something to go wrong. And doing it 2 weeks before an MRI can feel like I'm dangling bloody bait in a pool of hungry sharks.

At this point after 7.5 years I shouldn't be surprised by anything, but once again Vincent has to be Vincent and shake things up just as they were settling down. When I hear the word "rare", especially in relation to Vincent, it makes me want to laugh or cry. And I did a bit of both over the past week.

Vincent has a screw loose in his head. Literally. I couldn't even make this stuff up if I tried.

Last week we noticed Vincent touching one of his craniotomy scars several times a day. He had some nasal congestion so I thought maybe he was feeling some head pressure. But after I was able to really get a good feel of it, I felt sick to my stomach. One of the screws in his skull, which you could always feel, was more prominent and when I pushed on it a little I could feel it shift like it was wiggling a little. I thought, and hoped, I had imagined it but unfortunately I kept feeling it.

I was thankful to have the oncology triage line answered by an experienced nurse who knows us and Vincent because I knew it sounded crazy. The nurse immediately responded "well it's Vincent so it seems par for the course!" We ended up in a neuro-surgery consult on Monday afternoon where the loose screw was confirmed and we heard the word "rare" again. What do we do? Nothing! Just watch it which is so weird, but surgery to remove it has lots of risks and we always weigh benefit vs risk. If it breaks through the skin or causes him pain, the benefit vs risk ratio would change. The big challenge with this for me is the pain piece. When your child has an abnormal ability to tolerate pain and also doesn't communicate pain or distress then how do you ever know if they are silently suffering? You don't. You have to be a vigilant observer and use instinct and experience to make assumptions knowing you might be totally wrong. You constantly question every little behavior or thing that seems "off".

And this happening as we are heading into a scan next week sets off my alarm bells. There is no rest for my nervous system.

Please keep Vincent in your hearts and prayers that his loose screw behaves itself and the scans of his brain, spine, kidneys, and neck are clear. Cancer free now and forever.

12/01/2025

I heard these cookie kits were a big hit with the kids in-patient at CHOP last year. Holidays in the hospital are so hard, please consider purchasing a kit to be donated to CHOP!

Last chance to order a CHOP DIY crEATe cookie kit to be sent to a patient at Children's Hospital of Philadelphia on 12/17. We are hoping to match last year's donation of 440 kits, but we need YOUR help to make that happen!

Please consider purchasing a kit or sharing this post with your family and friends.
www.cakeadifference.org/product-page/chop-create-kit

We are so very thankful to those who have already purchased a kit, and hope you'll also consider being a part of this effort!

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!!!