This is another one of those posts that I’ve stared a thousand times in my head… I meant to post earlier last week and share what an awesome time we had last weekend up in the Finger Lakes region of New York visiting my niece Lizzy at Hobart William Smith College. The weather was spectacular; the fall foliage and the lake so pretty; the apple cider & donuts perfect; and yes, we conquered the corn maze and were crowned Farmers of the Year! Many happy memories were made and at one point I laughed so hard I may have wet my pants – suffice it to say we believe all the radiation he’s received may have given Justin some super Spidey powers when it comes to navigating corn mazes!
Too bad the good times couldn’t last. Justin returned to CHOP on Friday for scheduled intrathecal chemo and a quick follow-up with the ophthalmologist to ensure the radiation did the job and eradicated the cells swimming around in his eyes. Unfortunately, and much to our utter shock, the cells have returned to his eyes. This means that Justin remains in CNS3 status. Previously, as recently as 1 week ago, this would have excluded him from participating in CART-19, the last option he has left for a cure. Thankfully, the doctors at CHOP have decided to open a separate cohort of CART-19 for children in this predicament. Quick explanation here: Justin has leukemia, which is a cancer of the blood. Four years ago, with his first relapse and each subsequent relapse the leukemia crossed the blood/brain barrier and appeared in his spinal fluid or central nervous system (CNS). Doctors have 3 levels for classifying disease in the CNS. CNS1=no disease; CNS2=1-5 white blood cells per 1ml; CNS3= 5 or more white blood cells per 1ml, or cancer blasts and/or involvement someplace else (like the eyes, or lumpy disease in the brain, or lesions on the skin – still all considered leukemia). All of these CNS3 situations are very rare, and none of them carry a good prognosis. In fact, no child has survived when the leukemia has returned to the eye post-radiation. The goal of the doctors at CHOP is to throw these kids a life line and they will enroll six children with CNS3 involvement. Justin will be patient number one. To say Justin is a trail-blazer is the understatement of the century.
This one has hit us hard. I’m usually prepared for the bad news. I sense it’s coming so I’m not caught off guard. The bad news on Friday was followed by a whirlwind weekend of an already planned family visit and the always amazing Frances Foundation Gala on Saturday night. Justin wasn’t able to attend the gala last year as he was still in the hospital recovering from the transplant. We’d have hoped that this year we’d all be together truly celebrating but unfortunately our dancing was tempered and our smiles a bit forced.
I had a vision Friday night of a sort of Plinko like funnel game. Seven years ago, Justin started at the top – big wide funnel, standard-risk acute lymphoblastic leukemia, 85% cure rate, no big deal. We dropped our chip and stood a pretty good chance of walking away winners. With each relapse Justin has challenged the odds and his diagnosis has gotten rarer and harder to cure. The number of winning slots left at the bottom of the board for the chip to fall into has become fewer and fewer. Each year the funnel, the chance at remission, the possibility of a cure, has narrowed, and narrowed until this moment. There is no data to rely on. Will it work? We don’t know. Will the modified killer T-cells go after the cancer in his eyes and cause blindness? We don’t know. Since the cancer has already proven so aggressive will it change its morphology on a dime, as some other patient’s cancers have done and outsmart the T-cells? We don’t know. One chip left. One slot left. Jackpot or game over. We don’t know.