Jensin

Jensin Mikaylis joined the angels September 7, 2024 at 8 months old.

Jensin loved to laugh and giggle at his brother. He also liked…

• his paci

• to eat his hands

• to squeal when he’s happy or wants your attention.

• things that light up and make sounds.

Symptoms:

• Right side weakness

• Visible head deformity

Tumor location: Midline Posterior Fossa

Subtype: Sonic Hedgehog

Germiline Mutation: SMARCB1

Jensin had the following operations:

• EVD Placement

• Biopsy attempt 1

• Biopsy attempt 2

• Shunt placement

• Shunt revision

• Resection 1

• Resection 2

Jensen's treatment plan was the ACNS0333 protocol.

• 2 cycles of induction chemotherapy

• Possible gross total resection surgery

• 3 cycles high dose chemotherapy with stem cell rescue

• Radiation

Jensin finished two rounds of induction chemotherapy that shrunk his tumor a little more than 50%!

When he was diagnosed, the tumor was 5.5 cm. He underwent two resection surgeries with a 90% complete resection. Sadly, during the two weeks of healing after his resection surgery, several more tumors appeared in his brain and spinal cord, all located in inoperable spaces.

Due to leptomeningeal spread, with one of the tumors growing to 2 cm within two weeks, Jensin went home on hospice and spent his remaining time on this earth surrounded by his family.

“Know this Jensin, like our daughter, is here for a purpose. As parents, we can spend so much time thinking on the what ifs. But you love your son and I know you have done and are doing everything you can for him and doing it to the best of your ability. Psalms 31:24 says “be strong and take courage, all you who wait for and confidently expect the lord.” Sometimes his timing doesn’t feel right, but he is always there”  - A neighbor

This message was left to me by our lovely neighbor on a card. She and her husband experienced hospital life with their beautiful daughter and will also forever be impacted through her medical diagnosis. As someone who is not very religious this brought me great comfort and many tears. I want to share it here in hopes that if someone does read this page who may be in a similar situation; this one paragraph that tugged at my heart will also bring them some comfort. - Jensin’s mom, Gabrielle