On the 3rd day of Rare Christmas Phoebe wants you to know...fighting infections, even common ones like the cold, are more dangerous when you are living rare. For the past few months, Phoebe's symptoms and flare ups have only gotten worse. Every time she is sick her temperature spikes to over 103 degrees, and despite alternating tylenol and motrin to bring the fever down, it persists, going no lower than 102. And these high fevers are lasting 7 to 10 days. With every one of Phoebe's systems being affected, these long lasting high fevers take a horrible toll on her entire body With high fevers one can experience muscle weakness, elevated heart rate, elevated respiratory rate, and dehydration. Phoebe already has cardiac, respiratory, muscle and hydration issues without these fevers or being sick. So when she gets sick, her regular issues and symptoms become much worse, and at a quicker rate. Typically one will think a fever is the body's proper way of responding to an illness or infection, and Phoebe's fevers are showing a normal response. Unfortunately for Phoebe her body does try to fight infections and illnesses, but her immune system is so compromised that it becomes overwhelmed very easily, and it begins to attack her entire system, not just the illness or infection. Her doctors have described this as "shut down". Her body cannot handle fighting what is making her sick and the effects of the rest of her systems being fought against, that when her body cannot take it anymore it begins to shut down. It is scary and it is dangerous. And it is heartbreaking to know that she is at this risk with each illness and infection she gets. This is why it is so important to remember that what may be "just a cold" to you, is far worse and dangerous to immunocomprised patients.
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.