Holiday pain & joy
Friends and family, the last time I shared our journey was in September when we learned Kai's cancer had returned. Since then, we've navigated the challenges of radiation in October and subsequent scans in November.
The scans brought a mix of news: the tumors had shrunk, yet they persisted, and no new signs of disease emerged. However, November also brought its share of hardships. An MRI shattered Kai's shunt valve, leading to yet another surgery and more trauma for our brave warrior. After a brief period of healing (just three days), we embarked on a journey to Seattle for a crucial procedure.
In Seattle, a catheter was inserted into Kai's chest, connected to his heart valve. The goal? Harvest as many T-cells as possible using an apheresis machine. Connected for a grueling 7 hours, Kai's blood underwent separation, with the hope that these genetically modified cells will become formidable cancer fighters, teaching his body to resist the relentless enemy.
Amidst this medical nightmare, our team deemed it necessary to bridge with chemotherapy. An "IO" treatment injected Topotecan into Kai's shunt, left undrained for 2 hours to maximize its impact. The toll was significant—days of sickness followed. Yet, I'm thrilled to report that Kai has regained his energy and is keeping pace with his brother, especially during the festive season where Santa showered them with love.
Our journey is a rollercoaster of emotions. As we forge ahead, we've been gifted a canceled MRI, a rare occurrence at CHLA. Advocacy and determination prevailed, securing the crucial imaging within the 28-day window required for the upcoming trial. Scheduled for 1/11, this MRI, coupled with successfully modified cells (still awaiting this news), could mark a 2/5 start date for the trial—an ambitious goal we're determined to achieve.
For those following our story, you know the familiar anxiety of these upcoming mountains to climb. We've been here before, facing setbacks despite successful rounds of apheresis and modified cells. The January 2022 baseline MRI brought good news about tumors but rendered us ineligible for the trial. The upcoming baseline MRI holds both hope and trepidation.
So much more coming our way, taking things slowly-one day at a time. Loving on our beautiful Ohana and doing our best to stay afloat.
We wish nothing but love and health to you all in the New Year. I will share more regarding Kai's next steps, very soon. I do attempt to share daily on Kai's Instagram page, keepfightingforkai; if you'd like to follow closer. One love, always.