CHLA

It’s been a little over a month since we were handed some really bad news. We kicked into gear, researched our options and where we should go to have Kai treated. We started packing up AGAIN and moved our family back across the country to LA. Other than our suitcases and what would fit in our cars (that were transported back to Cali), everything else is still in Memphis. We are working hard to find a house, as we are living in Airbnb and that is very expensive.

Kai started his new protocol and we are already on the last week of our “first round”-6 week cycle. In this therapy, there is no ending in rounds. We get scans on Friday and we will know if this MEMMAT therapy is working on his tumors or not. If it’s not, we only have one other route to go. If it is, we continue on it. Since there are no known curative therapies for Kai, each day we get with this sweet boy is simply a blessing.

He is doing pretty well with the therapy. He is eating and growing and loves more than anything to laugh while he watches his brother being silly. He is getting stronger and finding his feet. He is wobbly at times due to the medicine and hospital time, but some days he is stronger than ever.

We are spending tons of time with family, which is such a lovely change and blessing for us all. Cruz had a little “summer” break from school and we were able to do tons of fun things, given that Kai had a week off from hospital visits/treatment.

We await a spot in Seattle for the Car-T immunotherapy and are hopeful for that option in the fall, but they only have 4 available spots each month, so we are on a waitlist. But, first thing is first, find out how this medicine is affecting Kai’s tumors. Hoping for the absolute best, these scan days can be so very hard and unsettling for us all.

We continue to be blown away by the care and kindness of this community.

Take good care of one another and love on your family HARD, every single day.