Nolan’s Ewing Sarcoma Journey

Nolan’s Ewing Sarcoma Journey This page is all things Nolan’s Ewings Sarcoma Journey.

03/15/2026

Came home to my house smelling amazing! So grateful he has the energy to cook.

It’s been a whirlwind for our family since Nolan’s diagnosis, and as his mom, watching him fight for his life is heart w...
03/12/2026

It’s been a whirlwind for our family since Nolan’s diagnosis, and as his mom, watching him fight for his life is heart wrenching.

To help you all get a sense of what he’s facing and how we’re hanging in there, I figured it’d be good to share some details on his chemo regimen. It’s pretty intense, but knowing the plan gives us a roadmap, and we’re walking it step by step with a lot of hope and grit.

Nolan’s on the standard U.S. VDC/IE protocol, a focused multi-drug setup that works to shrink the tumor, keep it from spreading, and pave the way for surgery or radiation. It really improves chances, with survival rates around 70-80% for localized cases like his.

It switches between two sets of drugs to attack the cancer in different ways while giving his body some breathing room: VDC mixes vincristine (which messes with cell structures), doxorubicin (to wreck the cancer’s DNA), and cyclophosphamide (to block cell splitting), while IE brings in ifosfamide (for a wider punch, usually with mesna to shield the bladder) and etoposide (to jam up replication). All this gets delivered through IV, going after cells all over the body. Each cycle ramps up the intensity with back-to-back days of heavy infusions—often meaning hospital stays for careful watching, extra fluids to clear out toxins, and shots like Neulasta to pump up white blood cells and fight off infections. Those multi-drug stretches can last 3-5 days in a row, hitting hard with little break before the next one rolls in, though there are some downtime spots built in for recovery.

The whole thing runs about 14-17 cycles over 6-9 months, kicking off with an induction phase (around 8-12 weeks) to knock down the tumor, then moving to consolidation to wipe out what’s left. Cycles come every 2-3 weeks, and sometimes they’re tightened up for stronger results, but stuff like Nolan’s anemia from low blood counts can push things back a bit. It’s tough going, with side effects like wipeout fatigue that calls for transfusions, nausea we handle with meds, hair loss, sore mouths, and those “chemo hands” where nerves or skin react (think redness or tingling, especially from vincristine or doxorubicin).

As a young adult, he tends to rebound physically a little faster, but the emotional side—like feeling anxious, cut off from normal life, or frustrated by all the hospital time—adds its own layers. We keep an eye on longer-term stuff too, like potential heart or fertility impacts. It’s all tailored based on scans and blood tests, with those compressed schedules bumping outcomes by 10-15%, and options like clinical trials if we need them.

Nolan’s strength blows me away every single day—he’s powering through these rough cycles and still finding ways to enjoy the brighter spots. Huge thanks to our team at Medical City Children’s for all their guidance and resources.

Here is a picture of Nolan and his oldest brother Ryan. My heart. 💛

Today, despite feeling wiped out already, Nolan wanted to go fishing for a bit of normal fun. We went to a quiet pond ne...
03/08/2026

Today, despite feeling wiped out already, Nolan wanted to go fishing for a bit of normal fun. We went to a quiet pond near home, and he caught a couple nice ones! But the fatigue caught up quick, and he needed a nap. It’s bittersweet—his determination really shines through, and these small outings help lift our spirits.

So, what even is Ewing sarcoma? From everything we’ve learned (and trust me, we’ve become unwilling experts), it’s a rar...
03/08/2026

So, what even is Ewing sarcoma? From everything we’ve learned (and trust me, we’ve become unwilling experts), it’s a rare, aggressive cancer that starts in bones or the soft tissues around them. It mostly targets teens and young adults—peak around age 15, so Nolan at 18 fits the bill. It’s caused by a random gene mix-up (something called EWS-FLI1 fusion) that makes cells grow out of control. Not hereditary, not from anything he did—just bad luck. Hits about 1-3 per million people a year, more often in guys and Caucasians. Common spots? Pelvis, ribs, limbs—Nolan’s is in his 10th rib.

Symptoms creep up sneaky: pain that comes and goes (like Nolan’s Italy saga), then swelling or lumps when it gets bold. Fatigue, fevers, weight loss can tag along. Often gets mistaken for sports injuries or growing pains, which is why it took months to flag. About 25% are metastatic (spread, usually to lungs) at diagnosis, but Nolan’s looks localized so far—huge plus.

Diagnosis-wise, it starts with basics like our ER scans spotting bone issues, then ramps to MRI/PET for the full picture, and biopsy seals the deal.

Treatment’s a team effort: Chemo first to shrink the tumor, surgery to cut it out, more chemo (and sometimes radiation) to prevent comeback. Nuances? Young bodies handle it better, but side effects can linger—stuff like fertility concerns or bone weakness we monitor.

Edge cases: If it spreads early, odds shift, but advances like targeted therapies and immunotherapies are boosting survival to 70-80% for localized cases.

Broader implications? It flips your world, teaches resilience, and connects you to amazing people.

This whole thing sucks—watching your kid’s dreams pause while fighting for his life—but we’re grateful for the progress and your vibes.

If you’ve got Ewing stories, chemo tips, pasta recipes, or just prayers, drop them in the comments! Dallas folks, any local resources? Let’s build this support squad.

Thanks for reading—more updates soon.

03/08/2026

Hi friends—some of you know us, but for those who don’t: this page is for my son Nolan. He’s nineteen now, and last April he flew to Italy to chase his dream—becoming a professional chef. He was living it: pasta, markets, late-night kitchens… until the pain started. Intermittent at first, then brutal. He pushed through for months—didn’t want to quit.

Right before Christmas, a lump popped up on his right side, near his ribs. Debilitating. He was already set to come home for break, so we got him on that flight—and took him to the hospital as soon as he got home. Scans there showed bone cancer—nothing more specific yet. We were referred right away to Medical City Children’s Hospital in Dallas, where they did the full workup. A couple days later, they told us: Ewing sarcoma.

Chemo started quick to shrink the tumor. He’s on it every week now—surgery planned for early April to take out what’s left, then twenty-four more weeks after.

This isn’t what he pictured. Cooking was his joy, and now he’s hooked to IVs instead of a stove. It breaks me, but he’s still Nolan—stubborn, funny, still talking about recipes he’ll make when this is over.

Thanks for being here. We’ll keep updates real—no sugarcoating. Just prayers, love, and maybe a good recipe here or there.

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Nolan’s Way
Diana, TX
75640

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