Memorial and Family Fund - Kaia Martin

UPDATE: November 6, 2023 - It breaks my heart to let you know that sweet Kaia passed away this morning while surrounded by her family. On behalf of her Mom, Dad and two younger brothers, we thank you to all who have contributed and continue to do so. Please lift them all in prayer and hug your kiddos extra tight. If you are so inclined to share, please do. Love to all.

ORIGINAL POST: This precious beach baby had already been fighting for her life for 3 years when this picture was taken. The month after her 3rd Birthday, Kaia endured emergency brain surgery at VCU for a craniopharyngioma (a rare brain tumor) that almost killed her. She has been living with all the life-altering effects of panhypopituitarism since the surgery.

At 6 years old, they found a 2nd craniopharyngioma growing on one of her regular follow-up MRI's. At this point, VCU referred Kaia to St. Jude Children's Research Hospital in Memphis, where there is a radiation oncologist treating many of this rare tumor.

Dr. Merchant at St. Jude's sent Kaia for proton radiation. Kaia had 30 rounds of proton radiation over 6 weeks.The proton radiation stopped the craniopharyngioma from growing any further.

Now, at 14, Kaia has a grade 4 glioma caused by the radiation treatments she received when she was 6.

This next passage is from her Mom, Jennifer Martin...

Kaia is suffering. We are watching our baby girl suffer to death. Kaia gradually, over the last few months, has lost use of both of her legs along with her right arm. After a lot of falls, she became bed-bound. Speaking became extremely difficult because of both the loss of motor control and the energy it took.

Kaia started having hard cries. She cried because she is sad to have to die. It's not fair. We didn't tell her, she just knew that's what her body was telling her. She broke down and sobbed everyday for weeks.

One night, while we were doing her bedtime routine with her; meds, Tanner massaging her legs, and me stretching her arms, Kaia used all of her energy to say, "I'm worried...." We stopped what we were doing to listen closely to her. I asked her, "what are you worried about, Baby?" She said, "I'm worried...about life.........the days.........are too short." Tanner and I starting sobbing with her. She cried hard with us that night, but that was the last time she cried.

Swallowing has been a challenge and we have switched to all liquids. Choking and coughing occurs with almost every sip.

Last Thursday evening while she was napping with myself, my sister, Bonnie, and Tanner's Mom in the room watching over her, she seized. She has never seized before. It was terrifying to see and hold my baby, as her body clenched and shook, and she struggled to breathe. When it was over, she would not respond to anything. The hospice team and several family members came over. She seized again, later in the evening. After a lot of anti-seizure meds, it felt like she had settled into a deep sleep. The hospice nurse said she may not wake up again; it was impossible to know. She stayed unconscious for 2.5 days.

Sunday morning, she opened her eyes. she has lost use of her left arm now also. She can hardly get any words out, and when she does use all of her effort to say anything, it is still very difficult to understand her. She can't use her arms or legs, she can't support her body, or even hold her head up. She has an extremely hard time seeing and focusing, so she keeps her eyes closed most of the time. She is still drinking small amounts of broth, or watery oatmeal, and water. Cognitively, she is all there, but the tumor is preventing motor control and movement.

Kaia asks every single person who comes to see her for a hug. It takes all of her effort to make that ask.

Whenever Tanner or I, or one of our parents leaves the very room she is in, she asks for that person repeatedly until they return, "Mommy, mommy..."

"Daddy, daddy..."

"Nanny, nanny..."

"Emmie, emmie..."

"Pepa, pepa..."

She wants us all to stay with her. I have even crawled up in the hospital bed with her and held her all night the last several nights. Holding her brings me comfort too. Hearing her breathe, smelling her hair, being able to kiss her cheeks and say to her all the good things that come to mind, just as I did with her when she was a little baby in my arms.

As this precious family prepares for the unthinkable, I ask you to please contribute what you can. Hold your babes extra tight.