Weary

We had the weekend off and we were all looking forward to it. Phoebe finished the clinical trial on Friday and we were ready for a break and a chance to breathe. Saturday was okay - Phoebe was not herself, but she had just taken the final dose of the study drug, so we expected some side effects. On Sunday she woke up covered in spots and in pain. The pain escalated and by lunch time she was unable to stand up or walk and she spent the day on the couch. We called the hospital, but because Phoebe was afebrile they suggested staying home and being seen by her regular team on Monday morning. Phoebe cried at the mention of a trip to the hospital and we wanted her to be seen by people who know her best, so we stayed home and watched for fevers. Phoebe's temperature remained just low enough to allow us to stay home, but high enough to cause worry. 

Bright and early Monday morning we were quickly ushered into an isolation room. We have been in "contact isolation" for the past seven months due to an antibiotic resistant bacteria that just won't leave Phoebe alone, so we are no strangers to isolation, but we are now under very strict isolation as Phoebe is being tested for chicken pox. 

She is also being tested for viruses, bacteria and fungal infections. By 10am we had seen multiple infectious disease doctors, and Phoebe's blood, snot, and saliva were sent to the lab for testing. Phoebe spent most of this time crying out for the doctors and nurses to leave her alone. 

Never a dull moment has become never a moment where I am not terrified and fearful for Phoebe's life. And heartbroken. 

The CT scan of Phoebe's lungs that was originally planned for Friday has been moved to tomorrow and expanded to include Phoebe's belly and sinuses. The infectious disease doctors are mainly concerned that the rash could be a "breakthrough fungal infection" - breakthrough because Phoebe is already on what is considered to be the best antifungal medicine. There will also be a bone marrow aspirate and a skin biopsy. 

Phoebe has zero white blood cells. Not a single fighter cell to come to her rescue. She is at risk for everything and everything is life threatening. To write that we are worried does not do this justice. We hope this is something simple that Phoebe can recover from quickly. We hope for smooth and quiet days. We long for peace and healing for Phoebe. We wish we had the luxury of worrying about fevers and chicken pox in a healthy child, but those days are so far in the past it is like they never existed. 

We are weary but holding it together for Mae and Phoebe. Mae, who is normally our pillar of strength and resilience has also started to break down. She misses her playful sister and she misses her life at home. Before the rash showed up, Jon was planning to take her home for a week so she could play with her friends and cousins. Each day she shows me the dresses she is planning to pack and then sadly asks when she can go "just for a little bit, because I really need to be with my sister". 

Please keep Phoebe and her big sister Mae in your thoughts and prayers. They deserve better than this and we hope and pray for just that - better.