Louis's Fight Against ATRT (Brain Cancer)

Hi, I am Jun Kawahara, a father of two kids named Anna and Louis (also called Rui in Japanese).

Our sweet Louis, only 6 months old, was diagnosed with brain cancer on October 25th, 2022.

The diagnosis was very rare brain cancer, Atypical Teratoid Rhabdoid Tumor or ATRT (https://www.cancer.gov/rare-brain-spine-tumor/tumors/atrt) on his brain stem. The 5-year survival rate for overall ATRT is 32.2%. And it is scary low for those under 1 year old, which is less than 10%. Only one baby can survive out of ten babies.

Since Louis was born in Boston in April 2022, we, including my beloved wife Marina, my lovely 4-year-old daughter Anna, and myself, have been very excited every day and have had the happiest moments. We spent many moments we can never forget. We went to nearby family parks, fruit pickings, and even to Japan to see his grandparents. He just finished the Japanese traditional 100th-day ceremony "Okuizome," which is first eating (pretending) to wish him a long, happy life.

At the end of October, everything changed in a moment. He got facial palsy and a damaged left eye, and was diagnosed with malignant tumor in his brain. One of the most fortunate things is that we came here to the Pediatric ICU of the Boston Children's Hospital, which has the most excellent doctors in the world. Our Pediatric Neurosurgeon doctor did perfect surgeries, and the majority of the tumors have been removed as of today. We also have a plan for Chemotherapy starting this week (hopefully) led by our Oncologists, who are world-lead in pediatric brain cancer.

Louis has been also doing amazing jobs with three significant surgeries only in 2 weeks, having a lot of tubes and electronic lines 24/7 on a small bed in the same room. I cannot imagine how this is painful for our little one.

While we have the most incredible team for his treatment, still, the statistics of this recurring aggressive tumor plunge us into an abyss of fear. We hope, really hope, he recovers and we can go back home altogether.

This should be a long journey (praying that it will actually be), and we will require a lot of support from our family in Japan, friends, doctors/nurses/social workers, the community, companies, governments, and volunteers.

It would be appreciated if you could pray for him with us.

Any donation will be a tremendous help for us, especially to get physical support by calling Louis's grandparents from Japan to Boston, which costs us a couple of $K per person each time.

Thank you for your time and kindness in reading this or in any way you gave to Louis and us.