This is my little lady, Kaiyanna, pictured four days before celebrating her first birthday. Then, pictured below, is Kai after her brain surgery, that nearly lasted an entire day, to remove a 3cm by 3cm Atypical Teratoid Rhabdoid Tumor (AT/RT.) AT/RT is a rare and aggressive form of brain cancer.
I have made these few sites for Kai. I didn’t feel so great about putting her online, but I have had the worse time being able to find anyone who has survived AT/RT. There is no community for pediatric brain cancer. It’s a sensitive subject, but it’s a reality. So, I made sites for Kai, mostly to update family and friends, but also to raise awareness and connect with other families.
My friend, Patrick, made Kai a page on Imgur.com. In less than 5 hours, her story made it to the front page of the site. In less than 24 hours, the page had over 15o,ooo views. So many strangers commented with encouragement and support. That kindness has been all we had needed to make it through our days. And one brave family stepped forward and contacted me about their 15 year old daughter who survived AT/RT. That has been the greatest gift I could ever receive in a million lifetimes. I would love for Kai’s story to reach more to raise awareness and connect me with more survivors. She has reached many people around the globe now, all on her own.
Some kind hearted stranger took Kai’s story from Imgur.com and made a page for her on Viral Nova ,and it was the third top story on the page.
Please share Kai’s story to help bring hope and raise awareness.
My daughter, Kaiyanna “Kai,” turns 14 months old on December 22nd. She will hopefully be able to stay on “break” from chemo for the holidays. The day before Thanksgiving, Kai was diagnosed with Atypical Teratoid Rhabdoid Tumor (AT/RT) brain cancer. AT/RT is a rare and aggressive form of pediatric cancer that has historically low survival rates. It is caused by a genetic mutation. Nearly everyone has mutations when their DNA and genes come together, but it is very rare that the mutation causes an issue, especially an issue such as cancer. The odds that my daughter got this form of cancer is so rare, only about 30 children a year are diagnosed worldwide. I believe many more go undiagnosed.
I noticed behavioral symptoms at first. She had always exceeded her milestones early on. Her pediatrician practically praised me because she was exceeded. One night, she seemed unusually tired and was pulling at her ear. I took her into the ER the next day, where they gave her medications for an ear infection. The medication was to be taken for 10 days. But after 10 days, she seemed to be in more distress. And then slowly, she began to struggle with things she had done successfully for months. She regressed as quickly as she had progressed. At 10 ½ months, the symptoms began, one after the other. She didn’t speak sign language as much. She no longer used forks and spoons. She stopped walking, and began to crawl sprawled out with her right leg dragging behind her. She could not pull herself up onto furniture. She seemed to have trouble hearing. She would have “black out spells,” where her pupils became large and she stared off into nowhere. She stopped talking, she didn’t even babble. She had always been independent with the mindset of an explorer. Overnight, she became clingy. She would cry when I put her down to play for only a minute so I could go to the bathroom. She would eat, literally, 4x’s the amount of most adult serving sizes. I would fear that she would vomit. She would get upset when I stopped bringing her food after 2 hours of her eating. She didn’t respond to pain. One time the order for her blood to be drawn was messed up. The phlebotomist drew the amount of blood that is for an adult blood draw. Drawing that amount of blood from an infant can kill an infant. Kai did not shed one tear, so the nurses were not aware of the mistake till afterwards. Kai no longer could turn the pages of books, which are her favorite thing. She couldn’t coordinate her hands well enough to play with toys that she had done so well with. I had taken her in to be seen by her pediatrician for every behavioral symptom as each one began. He kept telling me that she was fine, and would schedule for us to come back in a week to see how the symptoms were. Her symptoms were worsening. I told her pediatrician that if he could not give me answers, then he needed to see us to where we would get answers. Kai was then referred to specialist teams at Seattle Children’s Hospital. Our medical insurance denied the referrals. We did everything we could to get the insurance to work with us. One receptionist even tried to look up certain medical codes that would be accepted by the insurance company. The referrals were under a genetic code. And most insurance companies don’t cover any genetic testing costs of any sort.
I spoke with the hospital about billing me personally, and then began taking her to appointments for each team. Since our referrals were denied, we were put in the back of the line – Most of Kai’s appointments were scheduled four months out. My daughter would not have been alive had I waited for those appointments.
Four days before Kai’s first birthday on October 22nd, 2013, her face seemed puffy. I thought she was having an allergic reaction and took her in to be seen by her pediatrician. He said what he always said…To watch for signs that her symptoms are worsening, and bring her in the following week for a check-up. Well, the symptoms worsened over night. Her right side of her face became exaggerated, and her left side completely stopped working and became “droopy.” I took her into her pediatrician and demanded he figure out how I could be seen by the specialist teams sooner. He sent a referral for an urgent MRI, in hopes the MRI would explain many of her symptoms.
On November 19th, 2013, Kai fell asleep in my arms as we waited for the MRI appointment. The anesthesiologist let me hold her as they administered the anesthesia. I knew the situation was serious when I was told that neurosurgeons were being called from the operating room. The neurosurgeons came in their surgical shoe covers and masks, even. Then the neurologists came. Then the radiologists came. …There were a few dozen people looking at Kai’s MRI scan. A social worker and a radiologist came in to the room. The social worker said, “Who do you need to call?” I asked them what they had found. The radiologist showed me the MRI scan that revealed the mass in the back of Kai’s brain. They admitted Kai to the hospital. At 4:oo am, the sounds of the surgical shoes on the neurosurgeon team woke me up. They took Kai’s blood, and told me that they would be operating on her that morning. Kai went through 10 hours of surgery. The mass turned out to be a 3cm by 3cm posterior fossa Atypical Teratoid Rhabdoid Tumor. The location of the tumor explained all the symptoms Kai was experiencing. The tumor was blocking her spinal fluid so it could not drain. The tumor was wrapped around more than half of her central nerves that controlled all her motor skills.
The tumor destroyed one central vein completely; the surgery bout nearly completely destroyed the rest. The head neurosurgeon came out of the surgery and told me that she had AT/RT. He referred to Kai as “a very sick little girl,” and said that “life was not going to be easy.” He said she would not be able to move anything below her nose, breathe on her own, eat on her own, talk, and would need a colostomy bag. After the surgery, they took Kai in for another MRI to see if they had successfully removed the entire tumor. She woke from her sedation in the middle of the MRI machine, sat straight up, and pulled out her breathing tube.
They sedated her for four days after that incident, fearing she would do it again. The day she was taken off her sedation, the neurosurgeons and I watched as her limbs had spasms. Her brain was rewiring. The next day, Kai turned pages of a book I was reading to her. It was just like that phrase, it happened over night.
Kai is strong willed, she won’t cave in for anything. It’s been one month and one day since her surgery. She is working with therapists from different teams to learn to walk, talk, eat, and use sign language. The only thing the surgery took away was her hearing on her left ear and her ability to use her left vocal cord. She still has the same sweet soul, understanding, patience, integrity, and strong spirit. And the same stubborn side that she has always had. She has been beyond stoic and I couldn’t be any more proud of her.
AT/RT is rare and is only treated by a handful of centers. I researched the centers schedule of treatment, and they were all the same. A study just ended last year with this new schedule of treatment for AT/RT children. I had no choice but to agree to this new and mysterious treatment of high dose chemotherapy and proton radiation for Kai. She started her first round of chemo on December 9th. The chemo makes her nauseous. She is no longer able to eat, and has to be on feeds 24/7 from a ND feeding tube. Kai will need to be an in-patient for all of her chemo. Her age makes her at high risk for catching a illness that would take her life. We are going to make the most of this time, as Kai keeps beating the odds <3 My one year old is tougher than you. Kick rocks, cancer.
Kai Can Move Mountains
- Mama Teal