Kai’s fight against ATRT
On July 1, 2020 we welcomed our sweet, loving son into the world.
Healthy in all the ways, his family dotted on him as we got to know his personality. Due to Covid, some family and friends have not yet been able to meet him and experience what an absolute joy he is.
Up to his 6 month check up, all was well. He was progressing beautifully and was a constant bundle of joy. His brother has been so proud to tell everyone he meets that this is his baby.
About a week into his 6 months, we noticed he started to regress a little with his torso and neck strength. Each day we became a little more concerned, but we gave him space to improve on his own. We were confident it wasn’t anything to be concerned about.
Out of the blue, he started dropping his head back dramatically, no longer able to hold it up. He was no longer able to sit at his high chair and started to fall to one side or the other.
My mom gut ached and when I shared my concern with Chasen, he encouraged me to call the doctor. I found myself in tears with the scheduling team and they said to come in over the next day or so. After about an hour, they called back and said to come in right away - better to be safe, than sorry.
I walked into our pediatrician’s office and within 5 minutes of the exam, she said she was going to call a colleague at Standford Children’s Hospital. She said we needed to head there right away. In complete panic and disbelief, I called Chasen and had him meet me there. The doctor’s exam showed Kai’s fontanelle was full - meaning he had extra fluid in this brain that should not be there.
Upon arrival to the ER, he was examined and went in for a MRI. I laid my body on his and held him in place as we both cried. A mass was found and within 2 hours he was in surgery to release the pressure/fluid in his head and to implant a temporary EVD to regulate his pressure.
When he came out of surgery, he went straight into 4 additional hours of MRI. Our incredible neurosurgeon, Dr. Laura Prolo, met us with a plan to let him rest for a day and then go directly into brain surgery to remove the mass.
On Saturday January 30, Kai was rolled into surgery at 8 AM - he didn’t get back to us until almost 9 PM.
They told us the surgery was a mass gross resection, meaning that as far as they could tell, they got it all. Later that night, they ordered an X-ray to make sure his breathing tube was in place and they noticed a large mass on his chest. After additional imaging, we were told he had another mass near his heart. A final CT would confirm that it was an enlarged Thymus and not a mass.
On Sunday, he suffered a seizure due to the trauma cause by the surgery. They put an EEG on him for 24 hours to monitor his brain activity.
On Monday, he suffered a stroke.
Friday would confirm our biggest fear. Kai was diagnosed with ATRT, a rare and aggressive cancer. The mortality rate is very high and while we write this, we are devastated and sick over it all. Words simply can not describe the pain.
Once we get Kai strong enough, he will need rounds of chemo. His doctors are saying at least 6 months worth and then once he’s old enough, radiation. It all comes with more horrendous possible outcomes.
It cripples us in ways we cannot describe that kids with ATRT only have a 15-30% chance of beating this cancer. We have to be one of those families. We will do everything for our sweet baby and that might mean moving for treatment.
Next up is a possible surgery for a shunt. Then a lumbar puncture (medically it’s called staging) to tell if there are cancer cells in his spine. This will shape the treatment plan and its severity. He will need constant scans on his body to catch anything that presents itself throughout his life.
Chasen and I are lucky to have been able to lean on one another. We’ve been in the hospital with Kai since 1/28 and we’ll be here another week or so depending on his progress.
Cruz is at home with the support of our sweet Aunt Patti and Uncle Donny. We miss him tremendously. He misses his brother and us. We are all in indescribable pain.
We are humbled by the outpouring of support and are still trying to wrap our heads around how we can best be supported during this time. We are reaching out to the top experts in this rare disease in order to give Kai the best chances of survival.
Any unused funds will be donated directly to research of ATRT.