June 8th 2016
Hey there. It’s Alexx, updating for my momma. Sorry for the delay in blog posting. I went back to work last week—perhaps a bit too ambitiously; 5 out of 7 shifts, all 12.5+ hours–so I’ve been binge sleeping when able. But the beauty of my job is that my moms room is directly across the hall from my office. So I get to peak in on her often, and even visit for a bit if my day isn’t too busy. It’s very uncanny when I’m doing rounds and I bump into my dad or family members. But it’s so good to see everyone. My mom loves all the visitors, it’s so reviving for her. And she has been gaining energy and leaving the room a little bit more each day. Sure, she has her ups and downs. But in true warrior fashion, she forges ahead with a smile and never complains. She is truly remarkable and we are in awe of her each and every day.
So let’s see…where did we leave off?
In regards to the EBV and HLH her numbers are slowly improving. She received all 4 doses of Rituxan for the EBV. The EBV viral load has come down to 100; previously it was 350,000. She only received the initial first dose of Etoposide. It really dropped her blood counts and since she looks so well they are going to hold off on further doses for now. No fevers and her vital signs have been good. Her HLH markers are down trending: Ferritin 14,000—>11,000 and Triglycerides 450–>300. Slow and steady.
Unfortuntely during routine labs the team discovered that she has another virus in her blood. It’s not something she caught; it’s a virus that reactivated, meaning it’s a virus that most people have been exposed to and a healthy immune system keeps it suppressed. But sometimes in immunocompromised patients, these viruses are able to replicate. The virus she has is called Cytomegalovirus or CMV. It’s very common in transplant patients; I’ve seen it in many of my patients and it is very treatable. It can range from causing no symptoms to causing issues with the lungs (pneumonitis), the gut (colitis), eyes (retinitis), to name a few. She went for a dilated eye exam which was completely normal. And she went for CT scans of her lungs and abdomen. Everything checked out okay thank god. The 2 main treatment options for CMV are Ganciclovir and Foscarnet. They are using Foscarnet on her because Ganciclovir is very toxic to the bone marrow and she is already Myelosuppressed. The biggest side effects with Foscarnet is that it causes your electrolytes to be really low and can be toxic to the kidneys. But they are being very careful with her: monitoring her labs 2-3 times a day and keeping tight balance on her fluids. So far she is tolerating it well, her only complaint is a tingling sensation in her torso when the medication is infused.
So in summary, she caught the viruses because her T cells are low. The EBV caused HLH which required treatment with steroids and Etoposide which further suppressed her immune system and bone marrow. This attributed to the CMV proliferation. And CMV itself can be myelosuppressive. So ultimately, they are going to treat the infections and transfuse her blood and platelets when needed. But what hopefully will happen over the next week is arranging for the remaining stem cells she has frozen in Haifa to be flown to New York. It requires some logistical planning but the team is working on it. This will help two-fold: it will give her bone marrow a boost. And more importantly the stem cells will contain some of her own T cells which will help her immune system. So fingers crossed we can get them here soon.
Peace and love. Here are some photos from the past week.