It seems that whenever we take a step forward, we also take a few steps back.
Yesterday, we thought Phoebe had a yeast infection in her blood. Today, the culture grew to reveal an aggressive mold. This is also the cause of the angry and painful rash and it grew despite the fact that Phoebe has been receiving a medicine for the past seven months that would be used to treat it. She was receiving this medicine for her other fungal infection that thankfully appears to be under control. It grew because Phoebe has been severely neutropenic for months.
We spoke at length with the infectious disease doctors and Phoebe's oncologist about this new fungal infection. It was an impossible conversation that no one should have to have. Among many things, I remember them saying "it is bad" and then with sadness that they will do all that they can - no assurances - just the promise to do all they can with what they have.
Phoebe has no immune system - to fight this infection and heal long term, she needs an immune system. To help things in the short term, they are adding two additional antifungal medicines - one was started on Wednesday and the second was started today. Phoebe will also receive granulocyte infusions, harvested from me and given to her twice a week for as long as they will let me give them. This is a temporary fix for a broken immune system.
Phoebe's bone marrow results are MRD negative which is amazing and a huge blessing in all of this, but this result is with an empty bone marrow. There are very few cells and because her leukemia has returned again and again and again, the worry is that the immune system that we so desperately need may not recover or when it does it will also recover leukemia cells.
Our minds and our hearts are heavy. We are holding on tightly to hope and doing all that we can to support Phoebe and surround her and Mae with love.
How is Phoebe? Phoebe is not herself - she is tired and still requiring blow by oxygen, she is still having high fevers and her rash is still painful. Despite all of this, she stayed up late tonight to finish putting together her new lego, she laughed with Mae (who was placing very real looking plastic bugs on Phoebe's pump and scaring her nurses), and she sang and bopped her head to her favourite songs. This last thing is my most favourite thing to watch. She is always bright and shining Phoebe Rose.
Here is what Phoebe often insists plays on repeat in our room so she can bop her head and sing along ...
I have walked by this sign at St.Jude everyday we have been in patient. A gentle reminder to believe ...
Please keep Phoebe and her big sister Mae in your thoughts and prayers.