Kai

Kai's journey battling brain cancer has been a testament to his incredible strength and resilience. From the initial diagnosis at just 7 months old to the various treatments and protocols, Kai has shown unwavering courage and determination.

To support Kai and others like him, please visit keepfightingforkai.com. Your contributions, whether through donating blood products or supporting local charities, can make a meaningful difference in the lives of those fighting against this disease

Kai's story is a reminder of the importance of ongoing research, support, and unity in facing challenges head-on. Thank you for being a part of Kai's journey and for considering how you can help make a positive impact in the fight against childhood brain cancer.

Kai's journey battling brain cancer has been marked by numerous terrifying challenges and various modalities of treatments, surgeries, chemotherapies, radiation, immunotherapy and healing plant medicine. It’s truly impossible to capture this 4.5 year journey of highs and lows, but one thing is for certain. Kai is love, he is here, turning 5 and we are lucky to be walking this difficult journey right by his side. He is love.

Kai's Journey: A Timeline of diagnosis and treatment

• January 28, 2021: At 7 months old, Kai was diagnosed with ATRT-SHH (atypical teratoid rhabdoid tumor, Sonic Hedgehog subgroup), found to be non-genetic/no germline mutation. This followed the discovery of severe hydrocephalus, for which he underwent a series of procedures at Stanford, including the placement of an EVD (External Ventricular Drain), a full gross mass resection of a tumor at the base of his brainstem, and the placement of a shunt and port.

• February - early March 2021: Kai was considered "NED" (No Evidence of Disease) and traveled to St. Jude Children's Research Hospital in Tennessee to begin the SJY07 protocol.

• July 2021: After four months on the SJY07 protocol, Kai relapsed with new tumor growth in the original tumor bed, the frontal lobes of the brain, and on the spine.

• July 2021: Kai returned to California and began the MEMMAT protocol at Children's Hospital Los Angeles (CHLA) in response to the relapse and tumor growth.

• July - November 2021: During the MEMMAT protocol, Kai's originating tumor grew approximately 4 mm every two months, despite two different types of chemotherapy. However, this period also saw a reduction in his overall tumors, excluding the originating one.

• November 25, 2021: An MRI scan revealed new tumors in the frontal lobe, the originating tumor, and a "sugar-coating" of disease in the brain (with no disease on the spine).

• December 8, 2021: MEMMAT was discontinued to allow for chemotherapy washout and to prepare for admission to Seattle Children's Hospital for a CAR T Immunotherapy trial.

• January 13, 2022: Kai began cannabinoid treatment.

• January 26, 2022: A baseline MRI at CHLA, 14 days after starting cannabinoid treatment, showed significant improvement with all disease gone except for the originating tumor. Kai did not enroll in the CAR T trial, and instead, resection was elected.

• February 2022: Kai underwent a second resection at CHLA. This was followed by 6 weeks of daily, sedated focal proton radiation at the California Proton Center in San Diego, and he continued on MEMMAT at CHLA.

• April 2022: Kai experienced shunt failure, requiring a revision.

• October 2022: The MEMMAT protocol was stopped due to clear scans since February and Kai's poor toleration of the chemotherapy.

• January 2023: Clear scans.

• May 2023: Clear scans.

• September 2023: Evidence of disease returned with two new tumors.

• October 2023: Kai received focal proton radiation in San Diego to target the two new tumors, which he tolerated well.

• November 2023: An MRI showed shrinking of tumors with no new disease activity.

• December 2023: Kai underwent a shunt revision and a tap, confirming clear scans. He also received his first dose of Intrathecal (IO) Topotecan.

• January 17, 2024: Kai received another IO Topotecan dose and began daily oral chemotherapy.

• March 2024: Kai started the BrainChild-04 CAR-T clinical trial in Seattle, Washington.

• March 25, 2024: An MRI in Seattle showed stable disease, leading to the end of the trial as Kai did not tolerate the dosage.

• April 2024: No chemotherapy.

• May 2024: No chemotherapy.

• May 29, 2024: An MRI revealed a new spot of concern (other spots were not concerning).

• June 5, 2024: Kai resumed IO Topotecan in combination with daily oral chemotherapies.

• July 10, 2024: Chemotherapy administered despite a broken shunt.

• July 22, 2024: An MRI revealed an additional tumor on the pituitary gland.

• July 29, 2024: SIM day (simulation day) at California Proton Center, San Diego.

• August 12-23, 2024: Daily sedated radiation to the pituitary gland.

• August 28, 2024: Kai started Ddavp for a new AVP (arginine vasopressin) diagnosis.

• September 9, 2024: Chemotherapy was re-started.

• September 24, 2024: An MRI revealed an additional, larger mass in the hippocampus.

• September 26, 2024: Shunt revision.

• October 3, 2024: IO Topotecan administered.

• October 8, 2024: SIM day.

• October 9, 2024: ED (Emergency Department) visit at CHLA.

• October 9 - November 3, 2024: Inpatient stay at CHLA and Rady Children's Hospital to treat meningitis of the brain.

• October 16, 2024: Air transfer to San Diego for 10 radiation treatments during his stay.

• October 18, 2024: Shunt removal, EVD (External Ventricular Drain) placed.

• November 1, 2024: New shunt placed.

• November 15, 2024: Staples removed.

• November 20, 2024: A new protocol (Gemcitabine) was started.

• December 16, 2024: An MRI showed stable disease, with a reduction of the tumor from September scans after radiation.

• January 2025: Plan to continue IO Topotecan + Gemcitabine as long as he tolerates.

• February 20, 2025: An MRI noted two additional tumors. The same protocol (Topotecan + Gemcitabine) continued, with an added week.

• April 2025: An MRI showed small progression. Continuing Topotecan + Gemcitabine.

• July 2025: Next MRI TBD.

Join Kai's 5th Birthday Kindness Campaign! 

To celebrate Kai, his family is launching a special kindness campaign! They invite you to join them in honoring him and supporting his courageous fight by performing five kind gestures in his name. Your acts of kindness can take many forms – maybe it's helping a neighbor, writing a thoughtful note, or simply spreading a little extra joy!

If you're moved to make a financial contribution as one of your kind gestures, you can support ATRT research directly here: http://bit.ly/45FpE5J