We would like to thank Kiara for sharing her son Kenny’s ATRT story.
Kenny has always been a happy-go-lucky kid. Even with being diagnosed with level 3 autism and being primarily non-verbal, he has never let it stop him. He loves cars, animals, and his iPads.
Kenny’s story starts May 16th, 2021. On May 16th, my son had what seemed to be an unprovoked seizure. (Kenny had had two previous seizures in his life but they were febrile.) Kenny was rushed to the ER where they admitted him for further tests because nobody could figure out why he had the seizure. The next day they had given him an EEG which came back abnormal. This led to Kenny needing an MRI on May 20th. That is where our world took a turn.
The scans came back, and we were told he had a 2cm tumor growing in his brain and severe hydrocephalus. The doctors were really concerned about the hydrocephalus more than anything and stressed that it needed to be drained immediately. They went in and did an endoscopic third ventriculostomy, which was used to create a third ventricle to help drain and circulate the fluid. They were also able to obtain 7-10 pieces of the tumor to send to biopsy. At first, they told us it presented as a posterior fossa tumor which was not cancerous and is usually slow growing. They called it medulloblastoma.
Then they sent the biopsy to Mayo Clinic who discovered it was stage 4 atypical teratoid rhabdoid tumor. After long talks and tons of research, we decided, with my son’s team, that Boston Children’s should take over from there.
Kenny had his tumor fully resected, and a central line and NG tube placed on June 10th, 2021. He had an amazing recovery with no known deficits. Two days after his surgery his baby sister was born. After a few days, and a lot of negotiating with doctors, he was allowed to see his baby sister. Kenny was able to meet his sister a week after his surgery, and when he finally saw her it was like he got all kinds of strength. He got a huge smile on his face that we had not seen in over a week. From then on, he started walking around and playing with his cars and iPad again.
Doctors all said he was resilient! His team wanted him to start treatments ASAP and discussed the two possible treatment paths we could choose from, based on how he was so close to being four he was in the grey area. After long talks we decided to go with doing aggressive radiation followed by chemo. Kenny started radiation June 23rd and we were blessed to have Boston Children’s Hospital pay for a hotel for us to stay at for the whole six weeks of radiation because we are from Maine. During radiation Kenny stole the hearts of his whole team. They were so amazed that Kenny was handling it so well and even surprised he wanted to go in to get his radiation. He even helped the doctors with his “tubies” to administer his meds to be put to sleep for the treatment.
Kenny shared his 4th birthday with his radiation team and the Jimmy Fund Clinic where he was getting one dose of chemo a week. They both sang to him and gave him a few gifts, each knowing he loved cars. After 6 long weeks, on August 4th, Kenny was finally able to ring that bell!
We are now home in Maine. Kenny has handled his feeds well through his NG tube and is finally starting to gain his appetite more, so his nutritionist has lowered his feeds.
On September 3rd, Kenny had his first MRI since radiation to see if the tumor has come back or spread or if the hydrocephalus has returned. ***And his scans came back all clear!!
Kenny completed 6 months of radiation and 6 cycles of chemotherapy, both aggressive treatments!
Kenny is turning 5 this year and he has been doing better since ending treatments in February. Unfortunately, Kenny had gotten bit by a tick when he went strawberry picking for the first time. After a initial misdiagnosis, they discovered Kenny had contracted Lyme Disease. He is on antibiotics and is doing better now. Kenny loves cars and trucks, animals, his iPad, spaghetti, his sissy, and so much more!! Kenny is happy that he isn't in and out of the doctors and feeling terrible from treatments anymore. Kenny has a follow up MRI in the beginning of August to make sure everything is still okay.
Follow Kenny’s ATRT Journey on his social media pages: https://linktr.ee/Kennystrong #kennystrong