Jade has been so up and down lately. She feels good one day and the next she just doesn’t. She had an appointment on Thursday and I was shocked to find out her numbers were incredibly low. Her WBC was only .6 and her ANC was 300. Anything under 500 is severe and makes someone extremely susceptible to viral and bacterial infections. The team believes this is because of the viral load she’s had for the last week or so. Covid and CMV hit someone that is immunocompromised much harder. They decided to hold all of her chemo until her numbers rise a little. She didn’t feel up to going to school the next day. This weekend she perked up some. Has had an awesome appetite and I took full advantage of that and basically cooked all weekend. Pot roast and steak are two of her favorite meals and we made sure to have both of those. 

Friday at 4:30 her CMV level posted and my heart sank. Despite being on antivirals for almost 10 days her level continues to rise. It’s terrifying as a parent to not have all the information and knowledge that the medical professionals have. I have seen how terrible CMV can get. It’s incredibly scary. However at almost 5:00’on a Friday it’s hard to reach the team and express my concerns. They messaged me immediately and made me feel so valid and my concerns were immediately addressed in a call from her head oncologist and the main doctor from infectious disease that we have been working with. 

Jade is not at a crazy level that they are super concerned. They are monitoring her closely and thankfully her liver enzymes look good on the antivirals that were thought to cause significant increase last time. 

We go back on Wednesday. We will see if he chemo needs to continue to be put on hold and check her CMV levels. Prayers they are coming down and the virus gets to an undetectable number. Because it’s given us such a hard time keeping it under control she will likely need to take a medication for the rest of maintenance. July 25, 2026 is when she will ring that bell. 

Please keep praying.