Kennedy

Kennedy was diagnosed with ATRT in the posterior fossa, at the tiny little age of 9 months old on August 2, 2021. 

His fight started long before his brain cancer diagnosis. Kennedy is an IVF baby, the ONLY surviving embryo. God had plans for Kennedy and his parents. Christina and Nate believe that, held on to that and know he is a fighter. 

On August 6, 2021, after a total near resection, Kennedy started his childhood cancer journey on the ANCS0333 protocol. The only tumor left is unmeasurable and attached to his cranial nerves and left auditory canal. Kennedy finished treatment on April 26, 2022, and rang the off treatment bell. 

Through the trails and tribulations, Kennedy and his family have become a positive light, showing courage and inspiration in battling this awful disease. While the journey is a marathon, Kennedy has overcome so many obstacles and continues to persevere every single day. His scans remain “unchanged” at every quarterly MRI, and we pray it continues. If you saw Kennedy in passing, you’d never know every thing this little warrior “lion” has gone through. He brings so much light to others and acts just like your everyday toddler. His bravery just as a lion shows, is how Kennedy wakes up everyday.  In the face of adversity, lions never give up and neither has Kennedy. 

His story is a symbol of hope and inspiration, a reminder that no matter how difficult the journey, we can triumph against all odds.

October 20, 2023 - Update on Kennedy's Journey for his 3rd Birthday:

Kennedy had his routine MRI on 10/9/23, and it came back UNCHANGED; comparing all of his MRIs dating back to September 2022. What a miracle it has been. We never dreamed we would be celebrating Kennedy’s birthday at 3 years old when he was diagnosed at 9 months. But here we are.

In a few weeks, Kennedy will be sporting some eyeglasses due to Amblyopia. It’s from his cranial facial nerve damage and eye scarring, making him have astigmatism. He will be forever cute in them! Now, the BIG challenge will be to get him to wear them. Next year, in 2024, we will start nerve regeneration of his facial nerves in order to help with his left side facial paralysis and can’t wait to see that process turn out. 

To say Kennedy’s care team has him in good hands is an understatement, and we are forever grateful for Texas Children's Hospital. Thank you, prayer warriors, for continuing to place Kennedy on your prayer list. The prayers are working every day.

October 20, 2024 - Update on Kennedy's Journey for his 4th Birthday: 

Kennedy is thriving like any preschooler should, given his unfortunate circumstances starting at 9 months old. As parents we never knew if we would be celebrating Kennedy turning 4, but here he is showing us and the world how strong he is.

Kennedy’s last routine MRI in August of 2024 is unchanged in comparison to every previous MRI; and we are incredibly grateful. Kennedy is still exclusively G-Tube dependent for nutrition due to treatment making him so sick that he stopped eating and also his left facial paralysis that affects his left side mouth and tongue. We pray and hope one day Kennedy will understand food did not make him sick, isn’t scary and that he feels safe to eat by mouth when the time is right.

Kennedy has started using an Ophthalmology device called Luminopia to help his left eye strength in vision and help his brain from producing amblyopia. Luminopia is a virtual reality device that plays kid friendly shows and uses his prescription to strengthen the eye/brain signals. Hopefully, within the next year Kennedy will start the process of facial reanimation with his facial plastic surgeon at Texas Children’s, this will help move and grow certain facial nerves on his right side, and channel them to his paralyzed left side in order to aid in helping some of his facial function and aesthetics.

Kennedy’s next MRI is scheduled for the beginning of 2025 and we pray it remains unchanged to start off the new year on a positive foot.

Follow Kennedy’s journey on Instagram @kennedys.crue