The bone marrow results are not what we were hoping or praying for, but all hope is not lost. The ALL leukemia is gone, however, the AML is at 16%. Phoebe was originally diagnosed with MLL (multi-lineage leukemia) + Acute Lymphoblastic Leukemia. With this type of disease, it is common for the leukemia to switch lineage, or for one type of leukemia to stay hidden. We are not sure what happened with Phoebe as at the very beginning of all of this there were some "suspicious myeloid cells" that were swept aside and the focus and diagnosis became MLL + ALL. Nevertheless, this is why this disease is so difficult to treat and cure.
It is devastating. There is that word again. It doesn't come close to describing how we feel about this, but it's all I've got. That and terrified. Worried. Heartbroken. Hurt. Helpless. Deflated. Frustrated.
Phoebe, on the other hand, is beautiful, spirited, joyful, energetic, resilient, powerful, brave, strong, feisty. And together we are not giving up.
We are moving forward. Phoebe didn't finish the protocol that brought us here because she became too sick with infections, so now that her many infections appear to be improving, we are continuing with the final doses of chemo. These two types of chemo have proven to be effective against AML and Phoebe's disease has seen very little of them, so we are hopeful. We don't know if we will make it home for Christmas as we had hoped, and right now, if that is a possibility, it is small and should we make it home, it will be for a very short time. Cancer doesn't wait for, or care about Christmas.
We haven't told Mae and Phoebe what is going on and I honestly don't know how we will. Phoebe cries when she goes to the hospital and they both want to go home. We have been in isolation while at the hospital for 9 weeks with no end in sight. This means that we enter and exit through the isolation doors when Phoebe has appointments and avoid all common areas. We see the clinic, the medicine room and if Phoebe has tests and procedures, the isolation rooms in those areas. Phoebe is not allowed to attend parties, events, crafts, go to the cafeteria or the coffee shop. Phoebe has cleared the infection that put us in isolation, but the bacteria that caused it lives in her gut and so, until that clears, we are trapped. Phoebe misses the St. Jude that she knows and loves and isolation just makes all of this more difficult.
Today, Mae and Phoebe started to pack their suitcases for home. I didn't ask them to do this, they just did. They are talking about building snowmen, seeing their cousins, having sleepovers, decorating their Christmas tree in their house and sleeping in their room with their toys. As hard as we try to recreate home in Memphis, it is just not home. We long for normal, but we are also very aware of how lucky we are. We have met many families on this journey who don't get to tuck their babies into bed each night or complain about the isolation procedures at the hospital. Most of the infant leukemia babies we met and came to love on this journey are now deeply missed. We continue to be blessed with options and chances and Phoebe keeps going. We are still fighting and as long as we are fighting and worrying and complaining about how crappy this is, we are okay because it means that Phoebe is here. Phoebe is here and that is the most important thing.
We are back at St. Jude on Friday for chemo and the plan is to repeat the bone marrow tests next week. Please keep Phoebe in your thoughts and prayers. Please know that your thoughts, prayers, love and support mean the world to us. Thank-you for reading, sharing, and thinking of our family.