Victory 4 Vincent

07/20/2025

I have a special request.

6 years ago today I wrote a post about Vincent going into stem cell transplant and wishing for soft, fun gowns from Brave Gowns because the hospital gowns were rough and uncomfortable. You all came through big time. And have come through for so many other kids everytime we've asked for your help.

We need your help again. There are sooo many kids waiting for a Brave Gown. Let's help clear the list and put smiles on so many kid's faces.

Sponsor a Brave Gown for a hospitalized child and a portion of your purchase will be donated to our Parkway Run team to help find cures for childhood cancer.

https://www.bravegowns.com/products/gift-a-gown-for-chop-w-vincent-the-conqueror

gowns

Vincent's Final Brave Gown Campaign: One Last Big Push to Help 6,000 Kids. Vincent has faced more than most adults ever will:Four brain tumors, a secondary cancer, Lymphoma, and over 42 MRIs of his brain and spine.Through it all, he's remained stronger, kinder, and more brave than any child should h...

07/14/2025

Vincent has been feeling good for the past several weeks. He went back to school last week, which was very much needed. He thrives on the routine and structure that school provides, and he really likes being with his classmates.

During the few weeks he had off from school, we squeezed in several appointments with Vincent's specialists, who keep track of his growing list of treatment side effects. I have been trying to coordinate his medical appointments so that he doesn't miss school because he really needs the routine of school. He is also now seeing the dentist every 3 months to monitor the damage chemo does to developing teeth. He's lost several teeth over the past 3 months; he doesn't like the sensation of a wiggly tooth, and he gets so distressed by the feeling that he ends up pulling them out himself. He still has significant sensory challenges, particularly oral sensory issues, which makes going to the dentist very hard. I start sweating before we go in there, knowing what is to come. Same with ophthalmology. He hates anything in his face, really, and getting an accurate eye exam is nearly impossible.

He has been having fun outside when the weather is tolerable, but he still has a problem regulating his body heat, so we have to limit it. And the mosquitoes love him. He still gets terrible swollen welts from bites, which also makes being outside difficult. But he does love being outside.
Oh, and this week he has a school field trip to a bowling alley, which I know he will love.

He's just ready to live his best life, and we are doing everything we can to make that happen for him.

07/04/2025

I haven't updated about the new area of enhancement noted on Vincent’s spine MRI 2 weeks ago because we were not able to have a long sit down with his neuro-oncologist until today. We had briefly discussed it over email but he was traveling and then we were traveling so I tried to not think about it after I printed out and went through every single one of his 50 MRI reports. And I prayed that my conclusion was right.

Several years ago we added a sequence to his MRI imaging that had not been available at his initial diagnosis. The sequence is called CISS (Constructive Interference in Steady State) and it is an MRI technique that is used to enhance the midline and really differentiate between CSF (cerebral spinal fluid) and solid tissue. We added the CISS sequencing because there were areas of concern that we needed to monitor closely. The sequence is not a separate order the physican can make, it is part of the MRI order within the notes. About a week before Vincent’s MRI I was reviewing his last 2 reports and realized that there was no mention of the CISS sequence. I immediately contacted oncology to make sure it was still happening and I found out that it wasn't done on the past several scans. Oncology made sure it was done this time and the radiologist who read this report saw an area of concern, he looked back at a few past reports and didn't see it so he reported it as a new area of concern. I was almost positive that this area had been reported years ago and we were monitoring it but I also didn't see it on the last few reports which is why I reviewed all 50. I found that on an report almost a year ago, a radiologist noted the area of concern had resolved and after that the CISS sequence wasn't done again. My conclusion was that the note for the sequence was overlooked after the area was noted as resolved but it wasn't really resolved, it just wasn't picked up on the image slices that day because the area is so small and it's impossible to get the exact same slices MRI to MRI. But I wasn't able to review the actual images side by side with Vincent's neuro-oncologist until today. His neuro-oncologist was initially concerned but after reviewing the imaging with some radiologists who know Vincent’s brain really well and talking to the brain tumor board, he is not concerned. He said no one is concerned. It was there before. And the CISS sequence is great for determining csf vs tissue but can not determine if tissue is tumor. The area is also right where he's had over 100 lumbar punctures so it lines up with being scar tissue. So we are holding the line and staying the course with his normal scan interval. The next imaging will also include his annual full body MRI.

These scares will never stop. The more time goes on, the more complex his medical history gets, and the more likely it becomes that something is missed or left out. It is impossible for every medical professional who works with Vincent to remember every nuance of his story. I am the only one who can come close to remembering everything and every detail. It's hard. And scary.

And even though no one is concerned and the conclusion I came to is what everyone else believes, there is a small part of me that wants to scan again sooner because, well because of what has happened over the past 7 years.

Please keep helping us manifest a miracle for Vincent. Cancer free now and forever.

06/20/2025

June 19, 2018- Vincent was 4 months old and we were told he had tumors in his brain. At the time, it was the worst day of my life. It isn't the worst day anymore, because being told your child relapsed is worse, and being told they relapsed a second time is worse than that, and an even worse day is when you're told they have a second cancer caused by the treatment for the first cancer. I hope that day was truly the worst day of my life and nothing comes along to outdo the devastation it brought.

7 years ago today, and on every worse "worst" day that followed, the hope of Vincent's survival seemed to slip further away. The idea that he would end up finishing 1st grade, let alone going to school at all, seemed impossible. Yet that is exactly what happened last week! He had a great school year filled with tremedous growth. His school is a very special place where each child's education is truly individualized. Vincent requires a lot of support in order to be able to go to school, and even more support to have a positive and successful education experience. His teacher, therapists, and para-professionals all have incredible patience and they really care for and respect each student. Vincent is a miracle. His school is a unicorn. And I'm convinced that magic is happening in his classroom everyday. I still can't believe he is done 1st grade. Oh, and he received the "future teacher award"!

Vincent turning 7 and the 7 year anniversary of his diagnosis feels like a bigger milestone this year. Because Mina was 7 when Vincent was born and diagnosed. I can't explain it exactly but it has been harder to think about, mostly in terms of Mina and how robbed I feel of so much time with her. How fast time is flying now and knowing I can't get those years back and I can't slow these ones down. Parenthood is a time warp. And cancer is a thief.

But, here's to 7 years of beating the odds and manifesting miracles! 🥂

06/18/2025

We received Vincent’s results through MyChop pretty quickly today, but Vincent’s neuro- oncologist is away so we haven't discussed them. His brain is stable! Which I am so thankful for. But, there is a but which I'm hoping is a nothing. But, there is a notation of something on his spine that has lead me to spend a good chunk of time pouring over 50 MRI reports looking for proof that it's nothing. I've connected the dots I was looking for. Now I have to wait for his neuro-oncologist to return.

He did great today. He's feeling good. His brain is stable. I am blessed to be able to write those facts.

Please keep praying.

06/17/2025

Tomorrow, Vincent will have his 50th brain & spine MRI just 2 days before the 7th anniversary of his brain cancer diagnosis. 50 brain MRI's in 7 years, under general anesthesia. The 50th will not be easier than the 1st, other than our familiarity with the hospital and the process.

I will go through the motions as if it's just another day. We have our routines and to the onlooker we will appear calm and collected as we expertly navigate the hospital, but my stomach will be in knots and I will feel like a fist has reached deep inside my chest gripping my heart and threatening to rip it out.

Leaving our baby on a table surrounded by strangers. Waiting for someone to come out and say "Vincent's parents?". The silent hurried walk back to his recovery room. Watching his chest rise and fall while hawk eyeing the monitors as we wait for him to wake up. Pushing the thoughts away on the drive home. We will say little and exchange glances as we wait. Wait for a stranger to decipher the complicated images of our son's brain and then type words that will either bring us to our knees or allow us to exhale. The waiting really is the hardest part.

Today Vincent had his quarterly surveillance ultrasounds for his kidney/ bladder and his neck. Everything came back good and there are no concerns. We need the same thing tomorrow.

Please pray for Vincent to have clear scans tomorrow and forever.

06/16/2025

Last week Ramin joined a group of dads from the CHOP Cancer Center at a Philadelphia Phillies game! Vincent's social worker was an important part of creating the M.E.N.S Group and it has been a great way for Ramin to connect with other dads going through similar experiences.

Last week, some of our caregivers had a fun night out watching the Philadelphia Phillies at our latest M.E.N.S. event! Organized by our social work team, M.E.N.S. (Men Engaging in Networking and Support) is a group for dads and men who care for patients receiving treatment at our Center.

06/04/2025

We have been busy. I like busy, it is the opposite of sitting and staring at 4 walls in a hospital room. And we have not had to go to CHOP in almost 3 months!! The longest stretch of time away from medical appointments in 7 years. We went away for Spring Break, my niece graduated from college, Mina has been killing it in volleyball and her freshman year ends in 1 week, and there's just been so much good.

In HUGE news, Vincent has started working on potty training at school and at home. He has been working a lot on interoception skills this year. Interoception is your awareness of your body's internal senses. We are giving him no pressure opportunities at school and home to choose to sit on the potty, and he has peed on the potty a few times!!!! I honestly never thought we would get to the point of potty training, it seemed so impossible. And he may never be fully potty trained, but every inch of progress is a miracle to be celebrated.

The 3 month loop is coming full circle and we have several appointments at CHOP coming up including his brain & spine MRI, and his kidney & thyroid ultrasounds. His MRI will be almost exactly 7 years to the date of his original brain cancer diagnosis. Goodbye disassociation, PTSD is here to take up your space now.

Please keep praying for Vincent to be cancer free now and forever.

05/16/2025

It's been a minute since I've made an update and I've received messages asking if Vincent is ok so I wanted to let you all know that he is more than ok, he has been doing great. He's had no health scares and he's been feeling good. He loves going to school and he has made so much progress this year, it's just been incredible to witness.

At the beginning of the year when asked about school the only thing Vincent would say was "I had fun at school". It took him almost all of last year to even get to the point of giving that response and at home he didn't remember the names of his classmates and never said the name of his teacher. Now he regularly says his classmates names and today on the way home for the first time he told me about his day spontaneously. He said "I had so much fun at school. I had so much fun at the the ice cream truck." I didn't know what he meant by that, if it meant he played with a toy ice cream truck or they talked about an ice cream truck or what. When we got home I opened his folder and read "loved the ice cream truck today. Took 4 big bites of chocolate ice cream!" And I realized OMG he was telling me about his day!! And double OMG because he not only tasted ice cream but ate 4 bites! He has never been willing to try ice cream and his diet still consists of only purees and Herr's Sour Cream & Onion Chips. Go Vincent!

Tomorrow we will attend Vincent's school to watch him give a presentation of the writing he has been working on with his therapists! I am so excited and so incredibly grateful for every day and new experience he gets, and we get.

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.

05/02/2025

May 2018, seven years ago. I had no idea what Go Gray in May meant and I don't remember if I had ever even heard the phrase. I had a beautiful, healthy, 3 month old baby boy and the smartest 7 year old little girl who had waited her whole life to be a big sister. Our family was complete. Summer was coming. Life was good.

May 2018. The last month of our "before" brain cancer life or really the "before we knew" brain cancer life.

I had just started noticing that Vincent's head looked slightly tilted to the right. This was the first and only sign that a 9 cm tumor was crushing his brain.

You never think it will happen to you.

May is Brain Tumor Awareness Month. We have been Going Gray in May for the past 7 years , but we will know the brutal reality of it everyday for the rest of our lives.