"Home"

After ten days and nights in the hospital, we went "home" today. Phoebe is still having random fevers, but they often go down without Tylenol, so we are able to continue care at home. St.Jude is excellent at involving parents in every aspect of care and they do all they can to keep families together and out of the hospital. We are grateful for this as home is the best place for Phoebe right now. She was miserable in the hospital and often completely refused to eat or get out of her bed. Her reason for not eating cafeteria food, "they don't make it as good as I do", and no amount of reasoning would change her mind. Each day we spent in patient, we watched her get smaller and weaker and more withdrawn. She is not herself at all right now, but she is happier at home. Since we arrived, she has asked her daddy to make black bean salad, and although she only ate a few bites, we hope this is a sign of good things to come, so we can avoid another feeding tube. 

We are still not sure of the source of the fevers. Many things have been suggested, including leukemia, but we are holding on to hope that it is "just" an infection or a virus and that things will continue to improve. Phoebe has been tested for many, many things - everything possible I think - and so far, all results have come back negative. There is also no sign of leukemia in her blood. She is tired, and has a million reasons to be, but she has no other symptoms. Because this leukemia is aggressive and relentless, Phoebe has started to take a very low dose of chemo, specific to AML, in an effort to continue to calm the storm. It is often used in older adults, is well tolerated, and has shown some success.  There is hope and we are clinging to it. 

We are all excited to be home and Mae and Jon and I are excited to sleep in a real bed. We have all stayed in the hospital since Phoebe was admitted and we are exhausted. Mae refused to go home and wanted only to stay with Phoebe and tuck her into bed each night. There is a parent room attached to Phoebe's room and so that is where Mae would sleep each night, curled up on the pull out couch with either Jon or I. Another way that St.Jude helps us to stay together as a family. 

In other news, we finally got an apartment at the Target House, so while Phoebe was in the hospital, we moved out of the apartment we were renting, and into the Target House. This is our second stay at the Target House and like many things, it is bitter sweet. We have many beautiful memories here, we made life long friends, and were cared for by a wonderful staff. Many of the same staff are here today and were happy to see us, but sad that we are here. We are sad too, but grateful for another chance to see Phoebe run these halls. 

We hope that being "home" will bring a smile to Phoebe's face, a bounce to her step, more food in her belly and healing. One day at a time.