No-more-tubie day! 

Almost immediately after Jack’s diagnosis in August 2023, chemo made eating nearly impossible. He wanted food so badly but couldn’t keep it down—he’d sit in front of the snack cabinet, pulling things out, smelling them, even licking them, but never actually eating. By the second week of September, he had his first feeding tube to help maintain his weight, though he continued to lose quickly.

After his liver transplant that December, food disappeared from his world completely. His stomach was so sensitive he couldn’t even tolerate tube feeds, so he survived on IV nutrition for over a month. When we tried to restart formula, he threw up 20–30 times a day. Eventually, his team had to bypass his stomach with an NJ tube, delivering just a few drops an hour directly into his small intestine.

By the time we finally came home in May 2024, Jack was getting all of his nutrition from 24-hour feeds. He was constantly connected to his pump, slowly dripping formula into his body. He was stable, but he had completely forgotten how to eat—he hadn’t chewed in more than six months, avoided the smell of food, and resisted even sitting at the table.

We began weekly feeding therapy, starting from the tiniest crumbs. He learned to sit with us at meals again. By October, he could handle a few crunchy, salty snacks.

Everything changed in March 2025 when Jack began a six-week intensive feeding program—four days a week, one hour a day. His team worked to reduce his tube feeds and build hunger, and Jack bravely leaned in. Doritos became his favorite, and soon all crunchy, salty snacks followed. After the program ended, he continued OT and feeding therapy twice a week, adding fries, chicken nuggets, peanut butter sandwiches, quesadillas, “bread-dias” (grilled cheese), and more. With each new bite, his confidence grew.

Since June, he’s only needed night feeds and eats all of his full meals and snacks by mouth every day. He’s even taken all his medications without the tube and maintained his weight.

 And today—2 years and 1 day after he got his very first tubie—Jack graduated from his feeding tube! 

We are beyond proud of his courage, his perseverance, and the way he’s relearned not just flavors, but the entire act of eating—chewing, swallowing, using utensils, and joining us at the table.

No more midnight pump alarms. No more traveling with boxes of formula. No more dreaded at-home tubie replacements or worrying about someone pulling on his line. Just Jack—brave, proud, and discovering the joy of food again.

#jackstrong

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