She has been reluctant when it comes to her medications and treatments this time, which we were expecting since she has more than normal right now. In addition to her normal medications (which already consists of 6 medications) and alternating tylenol and motrin, Phoebe is taking Tamiflu twice a day, albuterol nebulizer treatments every 3 hours and saline nebulizer treatments as needed. So far these medications have not produced any adverse reactions and have been providing the relief they are meant to provide. For that we are thankful, but we are also counting the days until we can start to scale back on the medications/treatments this flu has required.
For now Phoebe is still miserable and exhausted. Her coughing has made sleeping difficult and only done in short spurts throughout the night. Her nose is raw and red from how much it is draining and how often tissues are needed. Her muscles are sore and weak, making tripping and falling more frequent than normal. But what I am most proud of with Phoebe is how much she is drinking. She is not drinking a lot at one time, but she is drinking throughout the day and keeping herself hydrated! Something that is never easy for her to do in this state.
But what this flu has also taught us is that there is another white blood cell in short supply in Phoebe's body. We were first made aware of Phoebe's health issues from lab results showing her neutrophil counts were very low (white blood cells that fight bacterial infections) making her neutropenic. From there we discovered Phoebe has an extremely low amount of NK cells (white blood cells that fight cancer) and the few she has have little to no function. With Thursday's labs we learned another white blood cell that is meant to fight infection is very low in Phoebe's body. Her lymphocyte count is 0.56. Her immunologist said her number being this low shows us just how much Phoebe's immune system is affected and how it is getting worse. (comparing these results from Thursday with well visit lab work, her numbers do show a downward trend, though this is the first they have ever been this low or dropped this drastically)
These new results have been sent to the NIH as well as her oncologist for consult. So for now we wait. Wait to for other opinions, to find out what testing is next, and for Phoebe to fully recover from the flu. But through it all she stays true to the champion that she is, fighting with a smile.