November 2024

Looking back at our blog, I see that it has been some time since I updated here. Mainly because Instagram seems to be where I can dump my thoughts quickly and reach those following us since the beginning. But then I realize, those who might not follow as closely on IG, may not know what this year has looked like for us. It has not been a pretty one.

Last I updated was in April…I swear, that seems like 10 lifetimes ago already.

Let’s see…

March, we were in Seattle (away from our family) for a month, trying a clinical trial that ultimately proved to be unsafe for Kai.

April and May we had to skip chemotherapy because Kai experienced such damaging inflammation in his brain as we attempted to deliver a very high dose of car-t cells (3x’s)

Mays scans showed progression of disease

June we started monthly IO topotecan only more and an oral chemo regiment

July’s chemo attempt resulted in his shunt malfunctioning

August, we went down to San Diego for 2 weeks, again, separated from our family to do focal radiation on the newest tumors

Sept, restarted chemo and our Sept scans show additional progression of disease

Late Sept we did a shunt revision to allow us to use it once more to deliver chemo

We gave chem on 10/3 successfully, 10/8 we went down to San Diego once more to do SIM and get ready for another round of radiation.

On Oct 9th, we went to the emergency department as Kai was unwell. They did every test imaginable to this baby. CT, X-ray, ultrasounds, and finally a shunt tap would confirm our fear. The shunt revision had resulted in an infection in Kai’s CSF. We were at CHLA at this time but needed to be in San Diego to get radiation for the tumor that was found in early Sept.

We were airlifted to Rady’s Children’s Hospital to fight the infection by removing the new shunt completely, 14 days of antibiotics, 10 days of radiation, and ultimately a new shunt internalized.

It’s Nov 8th. We haven’t been home for a week yet and Kai and I (mom) are both doing our best to reacclimate. We are over the moon to be home with our family. Labs this week looked good. Follow up at CHLA next week to talk with our primary team about our way forward. Our next scans are Dec 16.

26 days away from our family. This is the full breakdown:

9/26 Shunt valve replacement

October 9th ED in LA

Ultrasound, clear

Blood cultures, clear

Xray, clear

CT, clear

2 shunt taps, positive

CSF infection

CBC- hemoglobin low, transfusion

10/9-10/16 2 antibiotics (Vanco & other)

Rady’s

10/17-11/3 2 antibiotics given (vanco) dropped other when susceptibility came back

10/18 – shunt removal and EVD placed

Daily CBC and chemistry tests -electrolytes held, Hemo trended down slowly and low enough

on 11/2 (7.1, transfusion given)

10/23 Ng tube placement, 10/23 re-placement- feeds started at 10 and reached goal of 55 with

no issues, loss of the tube on 11/2 (elected to wait to put it back in at clinic since we do not have a

pump or feed)

2 CT scans (pre and post re-internalization of shunt)

Xray confirmed tubbing is in the right place and the shunt is currently set at 3 (NSG elected for 3 to help

CSF flow and not be at risk of a leak from the original incision that is still healing

Staples left in original 9/26 incision, not healed properly yet; removal in 2 weeks 

10 proton radiation treatments completed