Hope for the Future
Hello friends and family! We’ve been a little quiet, but we’ve been trucking along behind the scenes.
Gia was transferred to the regular Pediatric floor four weeks ago. The nurse to patient ratio is higher and because Gia no longer requires as much critical oversight, she has far more freedom to move about her room without being attached to monitors and can explore the hospital, playroom, and playground whenever she wants. Bigger TV, too, but won’t let Daddy watch football on it - cartoons only, ha! There’s also more privacy with a real door and bathroom/shower in her room. Definite upgrade from the all glass doors and shared accommodations in the PICU, although, we miss the wonderful nurses and respiratory therapists we grew to know over the three months we were there. Some come to visit us and we love seeing them when they do.
As Gia did in the PICU, she’s made quite the name for herself on this floor. The nurses get a kick out of her “spunk” as they call it, and I heard they sign up to have her on their shifts. While the team has created a great environment for her here, she has been talking a lot more about missing home and her kitties. Luckily, we have an end in sight and should be ready for discharge on October 27th, just in time to celebrate Halloween at home. We will be back or another hospitalization in 3-4 weeks because…
Her treatment was approved by the FDA and UCSF's Internal Review Board, and Gia will be receiving CAR-T!!!
We got the news on September 25th and had a 2-hour family meeting to discuss more about the process and risks. As excited as we were to hear things were moving forward, it became far more real, as half the meeting was them listing off all the complications we could face. Some of them rare, and others with a slightly higher chance of happening. For most, hearing the word "rare" probably seems unimportant and like it would never happen, but when you have an ultra-rare daughter who is 1 in 41.5 million, those rare statistics feel much more visceral. There have been successful trials of CAR-T being used in other autoimmune disorders and have put patients into a durable remission, but it has never been used on someone with ROHHAD, so there is some uncharted territory here.
After additional contemplation, conversation, and many more questions for the the team, we’ve officially decided to proceed. We know what the future holds if we do nothing or only stick to what’s been done before (which helps symptoms, but does not stop the progression of this disease), and this treatment gives us hope for a different possible future for our girl. An incredible amount of thought, work, and research from the team at UCSF went into getting here and finding another institution to partner with. We’re confident in their experience, that they believe this is the best path forward, have thought through all of the possible outcomes, and are prepared to care for her appropriately as we embark on this journey.
This past Tuesday we started the first part of the process, which was to harvest her T-cells (aphaeresis). Gia was hooked up to a machine about the size of a dishwasher, and through a central line it drew her blood, separated her cells by spinning the blood at high speed, and then returned her blood back to her. This took place over 4.5 hours and required her to stay in bed the entire time. I wasn’t sure how it would go, but Gia was perfectly happy to veg watching Bluey and Spidey all day, and the procedure went smoothly! Her cells were then sent to an institution in the Pacific Northwest to re-program them. Re-programming takes about a month, but we will know more in the coming weeks about our timeline to return. I’ll share more about our journey and the CAR-T process as we go through it, but if all goes according to plan, we will be back at UCSF in mid-November for 4-5 weeks and home the week of Christmas. Fingers, arms, legs, and everything else crossed.
In other news, we had a port placed this week becasue after Gia completes CAR-T, there will be regular monthly appointments that require blood draws and IVIG infusions. The port will save her from many IV placements and hopefully less traumatic experiences with needles. She’s been through a lot this week (central line placement, aphaeresis, two separate port placements), and she is such a trooper. Forever in awe of this small and mighty 3.5 year old.
Here’s to hoping for a smooth week, discharge, and for our family to have a few weeks at home together to decompress.
With love,
Linds & Kev
