Back in Memphis

We are back at St.Jude. Phoebe had follow up MRI and CT scans on the 7th, and both show improvements. The fungal lesions in her lungs and brain are still there, but the lungs are much improved with the largest lesion being just 5mm and some appear to be scar tissue or the beginnings of scar tissue. Her brain looks better, but the progress there is slow. 

The bone marrow results that we all celebrated over the holidays appear to be a bit more complicated and the pathologists have detected leukemia cells after all. It is hard not to feel completely deflated with this news. We are thankful that we heard this upon returning to St.Jude and not in the middle of the holidays. 

Phoebe continues chemo today on a 36 day protocol with plans to repeat up to 3 times. The protocol is a balance of chemo with quality of life and opportunity for healing. As much chemo as Phoebe can tolerate without affecting quality of life, while also keeping her immune system strong enough to fight the infections and keep others away. With an ultimate, although still very tentative, goal of pursuing a third transplant. 

If one word could sum up all that is going on, it would be fear. 

Intense fear and uncertainty. 

We are scared and most days we just feel desperate. 

I realized today, after we spoke for quite some time with Phoebe's doctor, that no one really knows what is in Phoebe's best interest and that like we are scared of what might happen and unsure of what is best, so are the doctors. There is no data, no statistics, no right answers, and nothing is even remotely certain. There is however, hope and research. 

We desperately want to bring home a healthy and cancer free Phoebe, but our reality is at times, completely overwhelming. We have been on this road for so long, we have lost so many friends, we have watched Phoebe endure too much. We are faced with incredibly difficult and impossible decisions each day. The terrifying reality of what could happen looms like a dark and ominous cloud, always over our heads. At times, we are hanging on by a very thin thread. 

When things seem impossible, like today, it helps me to focus on the good. 

Phoebe is here.

We are able to receive promising treatment and excellent care at St.Jude, that is not accessible to us at home.

We receive this treatment at no expense to us which is just amazing and something we are so thankful for. 

Phoebe's doctor is working hard to find cures for and answers to MLL+ infant leukemia. 

Phoebe is here.

We are able to stay together as a family in Memphis, thanks to a lot of support. 

Mae is healthy and happy. She is learning so much and we are able to teach her. 

Phoebe has almost fully recovered from the strokes and surprises us everyday with how incredibly smart she is. 

We are not in the hospital, and although we visit often, we sleep under one roof, and in our own beds. 

Phoebe has been given another chance, to beat this. 

We get up every morning with our family complete.

Phoebe is here. 

Please keep Phoebe in your thoughts and prayers and join us in believing in her miracle. 

Anything is possible. 

Go Phoebe go.