Where do we go from here?

Phoenix is my 10-year-old daughter who was originally diagnosed with PreB PH+ A.L.L. in October 2011, which returned in October 2014, and again in November 2016.

Phoenix hanging out after school today.

Phoenix has achieved remission and returned to her 4^th grade classroom yesterday. This has her many friends, family, and supporters wondering What now? Is she cured? What is her treatment like this time? I thought she needed to go to the Children’s Hospital of Philadelphia?

I totally get it. I’m one of those people.

Remission. This idea in the past has meant many things to me…mostly in the direction of …winning, hope, miracle, and survival. But this time… this third battle… I have to add words like confusion, exhaustion, skepticism, temporary, uncertainty, and fear. It’s not always as dark as that may sound, but it does make for a lot of hard hard days in my brain and for my broken heart.

The Medical Jargon

Phoenix’s leukemia is currently being controlled by a type of drug called a tyrosine kinase inhibitor (TKI). She has taken 3 different TKI’s in the past 5 years, and genetic testing shows that her body has developed a resistance, over time, to each one. This class of drug is extremely new and is still evolving, and every time a new generation TKI is released it gives hope to people like Phoenix. However, based on her history, this looks to be a treatment that may work for a while (a couple of years hopefully) and then maybe doesn’t help anymore. But also, because the drug is so new, we don’t know. We did not know that it would put her into remission without other (more toxic) chemotherapies assisting…so we just don’t know.  The CAR-T cell therapy that is happening in Philadelphia is also an experimental cancer treatment at this time, but is showing promising results for a cure. Similar to a transplant in some ways, it also has extreme risks and possible side effects, is ridiculously expensive, and has a long list of criteria for one to qualify. Due to the cost and the experimental nature, our insurance has denied Phoenix this opportunity…so far. However, our team of doctors has reassured us that if T cell therapy is their final decision for Phoenix’s long-term treatment, then they will make it happen. BUT to add to my confusion, they have not agreed that she needs it/qualifies for it/is ready for it/...yet. Needless to say, it is uncomfortable to exist in this circumstance of so many unknowns.

Phoenix, ICU in Nov 2016

So here I am. What am I doing? I think I am still trying to process this situation. I think the whirlwind of a surprise re-diagnosis, that led to a terrible stint in the ICU, …then straight to remission and back to regular life… has given me whiplash. I am looking for hope. I am trying to always remember that we are lucky because we still have treatment options ahead of us. I am praying that we can all stay strong and continue to fight. I am thanking God for the love and support of our friends and family.

The most amazing thing I have ever seen is the spirit of Phoenix Faith Bridegroom, who, in the face of everything, absolutely loves her life. She is such an inspiration.

Peace, Love, and God Bless.