I have been struggling with what to write and I have started and stopped this blog post so many times. I am exhausted and worried and cancer is wearing me down. It is also wearing Phoebe down which is so very difficult to see.
Phoebe is tired and not herself. She is sleeping more and eating less. She is sad and depressed, thanks to the steroids, and it is so hard to watch her struggle. She slept and rested most of today and when she was up she wanted to be walked around in the stroller or wagon. The little girl that spends most of her days running around, did not walk a single step today.
We have been able to avoid any aggressive treatment for quite some time that being here and watching Phoebe fight this terrible disease again is so hard. Phoebe bounced back and was in remission so quickly after her second relapse, it was like it never happened. The treatment was so gentle during our year of maintenance that we were able to live a "normal" life, but this is not like that at all. This treatment is hard on Phoebe and we are only on day 4 of 36.
We made it to Memphis on Thursday and Phoebe started treatment on Friday. Since we have been here, Phoebe has had a bone marrow aspiration, lumbar puncture, and MRI - all checking for disease. Thankfully, there is no disease in Phoebe's spinal fluid and no sign of a mass on the MRI - this is good news, but there is still a lot of disease in Phoebe's bone marrow.
The disease in the bone marrow is about 78% and it seems that we are now dealing with both ALL and AML - Phoebe's doctor explained that it is not uncommon for MLL + leukemia to switch type or have characteristics of both types of leukemia and Phoebe has had some suspicious AML cells in the past. The chemo Phoebe is receiving targets both ALL and AML so being here and on this treatment is what Phoebe needs, but it is still terrifying.
When Phoebe was diagnosed in 2010 and we watched her fight through months of treatment and then transplant, I thought we had seen the worst. I couldn't imagine feeling anymore pain, worry or heartache, but then Phoebe relapsed and the worry and fear that we felt before the relapse was nothing in comparison to hearing we had no options and should take Phoebe home. We found options and hope and what we felt most was relief. We would get another chance. We watched Phoebe suffer and fight through a second transplant, stays in the ICU, infections, nausea, and incredible pain and it was so difficult but it gave Phoebe a chance at life. We believed and hoped that she would be cured and her doctors did too. Everything looked perfect. Phoebe was healthy. We were beginning to heal as a family and we had a year without cancer.
With the second relapse, we worried that we would lose Phoebe. Whatever fear and worry we felt before was nothing. We watched as the mass in Phoebe's belly grew before our eyes and we were helpless. Completely helpless. Phoebe pulled through and we once again began to believe in our miracle. That anything is possible. We began to hope for a future without cancer. Phoebe was growing and thriving and we started to dream about her starting school with her big sister. We had 16 beautiful months without cancer and we enjoyed every one.
Then Phoebe relapsed for a third time. There are no words to describe the fear and the worry that we feel each day. It is unlike anything we have felt before. The conversations we have with doctors now mainly focus on giving us more time instead of the cure that we are so desperate for. There is hope and no one is giving up, but this is so very hard. We hope and pray that this is the answer for Phoebe. We continue to believe in our miracle. We just love her so much.