5/28 Day +51
Michelle came to visit yesterday evening and stayed over. For now I feel much more comfortable when someone stays the night.
I received the Etoposide last night and tolerated it without any adverse reactions. I had some nausea during the day and vomited once, but apparently this is fairly normal. I’ll continue getting steroids every day for now. The dexamethasone can cause high blood pressure and high blood sugars so they are monitoring everything closely.
I also had a Lumbar Puncture to check my spinal fluid to make sure there are no abnormal cells or evidence of HLH or EBV in my nervous system. Hopefully this is the last procedure!
And most importantly, no more fevers!!!!
5/29 Day +52
Quiet day today. Ricky slept over. Alexx came around noon. And Dakota and Lisa are coming this evening. Everyone’s in my hospital room despite the beautiful summer beach weather. Can you ask for a better family?
My counts were low. Hbg 6.3 and platelets 18. The doctor said it’s probably from the HLH and transplant and will take some time to normalize. I’ll get transfused today. I’ll be getting my third dose of Rituxan tonight to fully fight the EBV.
I was told that they will be monitoring my response to treatment of the HLH based on my clinical symptoms (no fevers) as well as specific lab tests (ferritin, CRP, CD25). Everyone has said I am making good progress. No fevers since Thursday.
Alexx and Jenn, my nurse for the day