Caleb's Victory Song

Caleb has been back in school for two weeks. Yesterday we drove him to his first DECA competition. Just thought to share a picture of him looking strong and not in a hospital bed.

GOD's healing is evident. Thank you all for your prayers.

First, a quick and important reassurance: Caleb isn’t back at the hospital because of cancer.

He’s at Children’s for his tongue procedure — sclerotherapy. As he’s gotten older, the vascular malformation in his tongue has affected his speech and, with puberty, the spasms have become stronger and sometimes last for days. This procedure is meant to help him long‑term, and we knew swelling afterward was expected. That’s why they planned to keep him in the PICU for observation.

What’s been difficult is that the swelling didn’t show up right away. It peaked between 24–48 hours, and instead of improving, he told us a few hours ago that it feels about 30% worse. Because of that, he’s still intubated and still only able to stay awake for a moment at a time. When he does manage to write, it drains him — but he can communicate enough to tell us what he needs.

There was also a miscommunication with the medical team. While I stepped out, his PA thought he said his pain was 3/10, so they rushed to remove his catheter, thinking he might be discharged today and wanting to avoid infection risk. Later, when I was back, he “told” me the pain wasn’t 3/10 — he had been trying to say the swelling was 30% bigger and was misunderstood. So now he’s still intubated, still swollen, and also dealing with bathroom logistics on top of everything else.

But even in all of this, he found a moment to be himself. When Scott came after work, Caleb reached for his hand and immediately started counting down for a thumb war. It was small, but it was him.

None of this is what we expected. I thought we’d see more progress by now and that he’d be in the PICU for the planned 24 hours and then recovering. Instead, we’re back in a place that brings up a lot of memories — it’s almost exactly eleven years since his cancer diagnosis. It takes a lot not to let those emotions surface.

Pray for good recovery.

Caleb's first day in high school! 9th grade. First time on a school bus.

A baby deer even came to send him off.

I'm super nervous, excited, and proud!!

UPDATE .... and then an explanation haha.

MR ORBIT FACE NECK W WO CONTRAST

INDICATION: tongue VM, also eval neck, has chronic cough

TECHNIQUE: Multiplanar multisequence MR imaging was performed through the face before and after the intravenous administration of contrast.

COMPARISON: 05/20/2019

FINDINGS:

The lobulated, cystic-appearing mass spanning the superior aspect of the posterior tongue is overall mildly decreased in size since 2019, predominantly owing to decreased size of the posterior central microcystic components. At the moment there is no visible fluid fluid level. Several small phlebolith are present. With contrast, there is diffuse enhancement that appears increased from prior. The lesion measures 2.1 x 3.7 x 2.4 cm, previously 2.6 x 3.7 x 1.8 mm (AP x TR x CC). Increased craniocaudal dimension is favored to reflect upward deflection of the central tongue, resulting in elevation of the central component and craniocaudal elongation of the lesion. No new component is identified.

There is similar nonspecific T2 hyperintense signal within the mid cerebellar hemispheres.

There are few small, scattered, benign appearing neck lymph nodes. The thyroid gland and major salivary glands are normal in appearance.

The major neck vessels and airway appear unremarkable. The visualized major intracranial vessels appear patent.

No definite abnormality is seen in the visualized portions of the orbits.

The visualized portions of the middle ear cavities, mastoid air cells, and paranasal sinuses are clear.

There is no definite abnormality in the visualized lung apices.

Test results are released to you at the same time they are released to your healthcare team. This means you may see these results before your healthcare provider has seen them. Your healthcare provider will review all of your results. If you have not heard from them or you have questions, please contact your healthcare team through MyChart or call your healthcare provider's office during normal business hours.
Impression
IMPRESSION:
Overall slightly smaller lobulated, cystic-appearing mass within the superior aspect of the posterior tongue, predominantly reflecting decreased size of the posterior midline microcystic component. Enhancement is increased.

Electronic Signature by: Christina White; Authenticated signature date and time: 6/28/2026 3:50 PM; Reviewed and Interpreted by Attending Radiologist:

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Back at Children's.
MRI with contrast for his face and neck.

Trying to help him with the venous malformations. Today, we hope to identify the severity.

Exciting news! Two of Caleb's drawings made it into a published children's book—one of them is even on page 3 of the sample reading! Had to share this with you guys because I know you'd be just as proud of him as I am.

If you have kids ages 5-8, or know friends with kids who love to giggle at weird science facts or just enjoy a good read, check it out: https://www.amazon.com/dp/B0G67BXD7J

It's $1.99 for the e-book and $9.99 for the paperback. Full transparency—I literally just ordered the paperback myself and haven't seen it yet, so we'll be discovering it together!

ONE Squid TWO Eyes THREE Hearts: Real Deep-Sea Facts and Laugh-Out-Loud Fun Written for Kids Who Love Weird Science and Weirder Creatures (Ages 5–8) (Oddballs Book 1) Download the free Kindle app and start reading Kindle books instantly on your smartphone, tablet, or computer - no Kindle device required.