Sylvan Strong, 3230 Eastern Ave SE, Grand Rapids, MI (2026)

02/05/2026

Yesterday was World Cancer Day. I spent a while trying to find the words, but like so many things cancer has stolen from our family, it’s also taken my ability to get out of my head and write. Still, I will say this, cancer is a heartless thief. My perfect son should have energy and physical strength to go out today and take the pictures we’d planned to take. Instead, because of cancer, and because there’s still not enough research or funding for childhood brain cancer, we’re taking them from his bed we’ve moved into our living room. But we refuse to let cancer touch our love, our memories, Sylvan’s strong spirit, and the unbreakable bonds that hold us together. Those will always belong to us.

On any day, not just World Cancer Day, my heart is with every person and family living with the reality of this disease.

01/24/2026

Updates become harder to write when things don’t go the way we’ve so badly hoped for, but all of you who care about him deserve to know how our sweet Sylvan is doing.

Sylvan had his MRI on the 17th. We were so hopeful, praying for stability at the very least, but the results showed more progression and infiltration in seven areas of his brain. The brainstem involvement was stable though, and has been since he’s been diagnosed, which we’re grateful for. But there is now a 10 mm midline shift in his brain. I caught myself wishing we hadn’t done this MRI. Since I saw those images, I can’t unsee them. And like we said, the scans mean little compared to how he is feeling. Syl’s not in any pain, he still smiles and laughs the majority of the time that he’s awake, and his high spirit is always inspiring everyone who comes around him.

His head pain hasn’t returned since a small steroid adjustment, and we’re so grateful that he’s still comfortable on a low dose. He has been having some focal seizures again, which sent us to the ER and led to some med changes and a bridge medication that’s made him very sleepy, wobbly, and pretty much bed‑bound lately. When the first bridge ended, another seizure came, so we had to start it again. The last dose of the bridge was this morning, and we are praying for no more seizures but thankful that we have a plan if it happens.

We’re also thankful that the seizures remain just focal ones, an eye twitch, and that they don’t cause him discomfort or pain. Because of that, the hospice team reassured us that we don’t need to rush him to the ER each time. They’ve helped us get the same medicine the hospital used so if things change, we can manage it from home.

One of the most heartbreaking changes that’s come with progression is that Sylvan has started using his right hand for everything. My baby has always been so proudly left‑handed, but now when we ask why he’s switched, he says, “It’s just not doing it right.” This seems to be left sided weakness due to the progression, which is common with DMG. It’s so hard to see him trying to play his Switch and not being able to. He’s so independent, and DMG wants to try to rob him of that. We’ve got him squeezing a little squishy creeper in his left hand during the day when he’s awake, just to keep it moving. Somehow, he never lets anything bring him down for long. He just keeps smiling, laughing, and making the best of each moment.

A special thank you to my mom Jessica, my brother Jesse, and my sisters Jasmine and Raven for taking Syl’s three sisters for sleepovers lately. It’s given Eryk and me the opportunity to focus on spending quality time with Sylvan and also getting the house in order. Even being able to write this update was only possible because of them. We love y’all and everyone else that continues to hold Sylvan in your hearts, thank you. Your love, care, and prayers mean more than words can say. The strongest prayer we are asking everyone to cry out for him right now is for continued comfort and happiness. 💚🍀🌿🌳

01/17/2026

Syl is doing his MRI right now, but these scans mean little to us compared to how truly happy he’s feeling. Send us all your good energy & prayers. 🌿💚 thank you all.

01/17/2026

To the leaders deciding kids’ brain cancer funding: Dr. Anthony Letai (NCI Director), Douglas R. Lowy (NCI Principal Deputy), Brigitte C. Widemann (NCI Childhood Cancer Advisor), James H. Doroshow (NCI Treatment Division Director), NIH Director, HHS Secretary Robert F. Kennedy Jr., and House Appropriations Subcommittee on Labor-HHS (Chair Robert Aderholt, Ranking Member Rosa DeLauro)

You may not be personally affected by your decisions on where funding goes, but here’s something to think about.

These kids like my son Sylvan are changing the world NOW, with their incredible strength that only grows stronger through their challenges. I can only imagine the difference they’d make if you’d put more funding toward them. CARE about them, they MATTER. They’re stronger than any of us could ever be. You just don’t get it, and I don’t understand why.

Haven’t you ever read what these kids go through? The absolute worst mental and physical toll, the breakdown and shutdown of their little bodies. They’re CHILDREN, and they shouldn’t have to endure this pain.

Please DO SOMETHING. Sooner rather than later. This has been an exhausting 18 months of HOPE. Hoping and praying you’d step up for these amazing kids fighting for their lives.

%

01/08/2026

There’s been a lot on our hearts lately. We wanted to share an update, as well as a tribute to our dear friend who quickly became family to us, Bailey Redick. Since meeting Bailey last year, he made a profound difference in Sylvan’s journey through DMG. Sylvan felt truly understood by someone walking a similar path, and we will always treasure that connection. We send so much love and prayers to Bailey’s family and everyone touched by his radiant presence as they carry his light forward. His mother, Heather, has beautifully written about Bailey's journey and the light of who he was on the page Betting On Bailey- His Fight Against Diffuse Midline Glioma.

Lately, Sylvan has been feeling more comfortable and we’ve been soaking in every bit of time together. Every improvement and day is a gift, and we’re eternally thankful for the care and treatments helping him. He has an MRI coming up on the 17th this month, and while we’re staying positive we remain focused on how he feels and the precious time we have together.

We are endlessly grateful for everyone who continues to lift us up, and for the connections that have changed our lives and hearts, like Bailey’s. Thank you all for your continued love, prayers, and support as we keep spreading awareness for Sylvan, Bailey, and every family going through a fight like DMG.

💚🌳🍀

01/01/2026

Thank you 2025 for all the beautiful memories with Sylvan. Here’s to 2026 💚🍀🌳🌿

12/05/2025

Hey Sylvan Strong fam 🍀 I figured it was time for a health update on Syl for all of you and thankfully, this is an exciting one.

In attempt to make Sylvan more comfortable, his oncologist and I felt good about slowly lowering his dexamethasone that I was hesitant to start again in the first place. Since starting this change, he is no longer experiencing constant hunger and started caring about the activities, games and shows that he loves again. I never thought I’d feel so happy to see my child play on his tablet, but him picking that up again is a huge blessing. We didn’t know if he was going to want to do a lot of the things he loves again, but Syl loves to prove the doctors wrong. He was even showing granny and I his parkour moves again this week! I was worried that headaches might start up, but it has only been some evenings right before I give him his night meds that he feels a 5/10 pain for 10-20 seconds. Dex has caused him so much irritation and weight gain so if his pain returns worse, we’re praying to have a better plan for pain relief. But for now, Sylvan feels great, his blood levels are good and we aren’t taking that for granted. We just got back from an amazing trip to Florida all thanks to The Jenna Kast Believe in Miracles foundation and Give Kids the World resort. Sylvan went to Universal Epic Universe, Disney World and he tried lobster for the first time. Those are just some of the highlights of our beautiful trip ☀️🦞🌴

Other update, we’ve stopped the Ribociclib after about 3 or 4 doses of it. We were obviously given the okay to crush it and put it through his G tube, but we’ve since learned from a DIPG research group that crushing it can cause it to be ineffective for the child and unsafe for the caregiver. I’m waiting for a call back from a pharmacist that can give me more information but for now we won’t continue it. *edit: pharmacist called and let me know that it should never be crushed, it’s very hazardous, crushing it can lead to elevated levels of the medication, and it can’t be dissolved in any water either. Wow. So our option is we can try to get Sylvan to take the pill by mouth if we feel it’s necessary.

Whether it’s the Everolimus working in the PIK3CA pathway in his tumor, lowering his steroid that’s causing him to feel more like himself, both or neither, I’m thanking God every day because Sylvan is happy and he feels good. As much as cancer has tried to take parts of him, he continues to thrive like it doesn’t exist.

Thank you all for your continued positive thoughts, prayers and for caring about Sylvan. 💚🌳🌿

11/15/2025

We are grateful to be welcomed as a part of The Cure Starts Now family. Here is Ellie supporting her big bro this morning, one of Syl’s biggest supporters 💚 We can’t wait to get pictures of the whole family in these shirts. Can’t thank you enough CSN!

In support of Sylvan and all children bravely facing brain cancer, CSN has created a link so that we can fund research in Sylvan’s name. 100% of your donation goes directly to fund research, fueling hope and progress for kids everywhere: donate2csn.org/Sylvan

Thank you so much to CSN for all that you do to help fund this important research. It’s truly amazing.

11/13/2025

The first picture is from 2023, before Sylvan was diagnosed with cancer. What I wouldn’t give to go back to that time and just stay there.

The second picture is my beautiful Sylvan on Saturday, at what may have been his last birthday party. We don’t believe it, but it’s what we’re told. No matter what cancer does to his brain or body, he’s still unapologetically Sylvan and I don’t see that changing any time soon. Always, always my goofy, creative, caring, stubborn, nature loving son. Even if cancer has tried to take pieces of him, it hasn’t stolen what makes him Sylvan. That shines through every single day.

I wanted to share the results from his EMU, the special brain monitoring test Syl was doing in the last update. There was something to be grateful for, those weird 3-5 second bursts where Sylvan feels heat on half his body thankfully are not seizures. Just a strange sensation his brain is throwing at him because there is a lot going on in his brain. So his seizures remain controlled and we’re taking that as a huge win.

The rest of the EMU results were harder to hear. The doctors called it “widespread brain dysfunction.” What that means is the tumor, the infiltration from it and the swelling is messing with how different parts of his brain work together. The EMU picked up that his entire brain is under stress, almost like all the signals and connections are slowed down and mixed up. Making it a lot harder for Sylvan to think quickly, stay focused, and remember things the way he used to. Sadly, these results connected the dots as to why his speech is slowing and he’s forgetting words, or why he’s not drawn to his favorite games, painting, or having trouble finding a TV show he wants to watch. They painted a picture of why my lively, creative, happy boy has been having all of these changes. Because his brain is working so much harder to do even simple things.

Even with everything Sylvan is facing, there are still reasons to have hope. Right now, any symptoms he has are well managed. Dr Mitchell and even the hospice nurse has been impressed with how well he's doing. With that encouragement, we felt brave enough to try adding ribociclib alongside everolimus, and so far (after three weeks of everolimus and five days on ribociclib), he’s still doing really well. He isn’t getting worse or having unwanted symptoms like the doctors expected after his last MRI, and we truly believe this combination is helping. Both ribociclib and everolimus target specific pathways in the tumor cells, and together, they may slow things down even more. As long as Sylvan keeps doing well without bad side effects, we plan to continue with both medications. We know Sylvan has a strong fight in him still, and we’ll keep standing beside him every step of the way, doing everything we can to support him.

Last Saturday, we had a celebration dedicated to Sylvan’s strength and bravery. While it’s true that’s what we were celebrating, we were also told he might not make it to his 9th birthday on December 23rd. That was just crushing to hear but we knew we had to throw him a party filled with his favorite things. Music, art, games, food and his family who love him beyond measure. Sylvan deserves his 9th birthday. He deserves the chance to grow up, become a parkour master or a business man, have the family he dreams about, and I’ll keep believing that it will happen.

Thank you to every one of you for your prayers, support, and positivity. It means the world to us, as Sylvan is such a beautiful part of our world. Please keep sending love and good energy our way. We appreciate it deeply and love you all.

💚🌿🌳🍀

Sylvan Strong

02/05/2026

01/24/2026

01/17/2026

01/17/2026

01/08/2026

01/01/2026

12/05/2025

11/15/2025

11/13/2025

Address

Website

Alerts

Shortcuts

Share

Category