Today marks the first day for my new treatment plan. My mom flew out on her birthday (October 28th) from California to be with me through this next journey. Fortunately, we were able to spend some time together before checking into the hospital just yesterday.
Since my previous treatment in 2016, CAR T 19 gained FDA approval and has saved hundreds of children all over the world. Just after the news of my latest relapse, a brand new clinical trial opened just in time – a CAR T 22 clinical trial. Although very similar to CAR T 19, CAR T 22 is a brand new trial and I will be the first patient – in fact, my doctor and I had to wait 20 minutes for the FDA to open/accept the trial before signing.
We are both excited and a little nervous for this new CAR T clinical trial. My doctor said the side effects of this CAR T 22 trial should be similar to that of my last CAR T 19 trial. The treatment was a success; however, I had very high fevers and some small seizures – which is good because it means the T cells are fighting the cancer. With such high fevers (105.8 degrees for six days), I do not recall anything that occurred over that period. Although a bit scary for others who surrounded and supported me during that period, CAR T proved to be very successful in that I was able to achieve remission in just 28 days – and this was shortly after being placed on hospice with just three to five weeks to live. A miracle indeed!
Shortly after mom arrived at the hospital today, Father George popped in from the local Catholic Church. After talking and laughing a bit with my mom and I, Father George proceeded to give me an “anointing of the sick” and said he would be around during my stay here in the hospital. Nothing feels better than putting all my worries in God’s hands, for he has carried me all this way for a reason. Although I may not know the reason or purpose, I am fortunate and very grateful to have this opportunity.
This treatment regimen begins with five days of chemotherapy, followed by my T cells. I am scheduled to receive my new T cells on Wednesday, November 7th. After the infusion, we will wait for “the storm” to take place.
Physical therapy came by and brought me a nice stationary bike to ride in my hospital room. With the best views from the 6th floor, I look forward to exercising while I am still feeling well.
I look forward to sharing updates!
This video is a reminder of the heart of my inspiration 🙂