Hello all,

We apologize for not keeping you as updated on here as we’d like. We’ll have to write a more general update soon. But right now we crave your prayers.

Over this past weekend, Silas developed a condition called autoimmune hemolytic anemia (AIHA). This basically means his B cells are producing antibodies that are causing his red blood cells (RBCs) to burst. This is also likely in conjunction with his T cells—and maybe other cell lines—attacking the RBCs. As you can imagine, this has lead to dangerously low hemoglobin levels. (Hemoglobin is a protein that helps carry oxygen in the blood.)

Silas has had four blood transfusions with a fifth any minute now, along with multiple rounds of antibiotics, steroids, IVIg infusions, etc. As I write this, he’s been stuck over a dozen times in just a few days.

If his hemoglobin doesn’t stabilize tonight, they’ll place a PICC line in one of his arms. They may also start leaning toward infusing a drug called Retuximab, which causes B cell death.

We covert your prayers in this specific way: that his hemoglobin stabilizes tonight and they see the results of it in his early morning labs. If this is the case, he may not need the PICC line and won’t need the Retuximab.

Now, we’ll do what it takes to save his life. But the main reason we don’t want to go the Retuximab route is, in 50% of such cases, patients permanently lose B cell function. And after four doses, the occurrence of B cell loss-of-function increases dramatically. 

B cells produce antibodies. If he loses B cell function, he’ll have to be on IVIg the rest of his life. And the whole reason Silas had chemo in the first place was to encourage B cell development post-transplant.

Anyway, thank you for your prayers. Thank you for your support. Your encouragement means a great deal to us.

May God bless you!

Hello all,

After having received rounds of the Busulfan chemotherapy drug on the fourth and sixth, and his own gene therapy-corrected hematopoietic stem cells (HSCs) on the eighth, Silas is doing well. 

Please continue to pray that engraftment will occur quickly, that his T cells will grow robustly, and that his automated neutrophil count (ANC) soon reaches threshold. We would really love to celebrate Christmas at home, if at all possible.

We can't thank you enough for your kind and generous support, and especially your prayers. May God richly bless you the way He has blessed us through you!

-The Belknaps