On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Friday, September 19, 2014

Go Phoebe go

All things considered ... Phoebe is doing well. Thankfully, she is much better than she was last week. She has been playing and improving over the past few days and it is so nice to see her smile and be happy. She is a regular in the hospital playrooms and eager to join in on the craft activities that are held often at St.Jude. 

Her blood work looks okay. She is now completely neutropenic, which is expected, and her kidneys are working hard, but we hope the worst of this is behind us. It has been a difficult week, but all things considered, we are doing well and grateful to be here. 

When we arrived at St.Jude last week, Phoebe's leukemia had spilled into her blood. She had only about 3% leukemic blasts in the blood but had we tried to go home before coming here, we may not have made it. Since starting treatment, the blasts are now gone and we hope they never return. 

We were and are in shock and are still coming to terms with this relapse and our reality. It is often very easy to forget that Phoebe is so sick as she is usually and honestly a picture of health. When we are at the hospital with both Mae and Phoebe, people who meet us for the first time often ask, "which one has had two transplants?" - Phoebe's ability to thrive despite all that she is going through is amazing, but as we give her more challenges we worry constantly that this will prove to be too much. When she is tired and needs to rest, as she has had to lately, we worry that she won't recover. This is our reality. 

We are so happy to see her smile return, to see the bounce in her step, and to witness the pure joy that she brings, and we are taking things as they come, one day at a time. 

We have the weekend off from the hospital and will be staying home. The good news is that we decided to rent an apartment close to the hospital as the hospital apartment housing is full so we now have a home to go to. Life without a kitchen is hard especially when Phoebe loves to eat and we are careful about what we give her. We have tried to recreate a "home" away from home to make things easier for Mae and Phoebe and we are all happy to be a bit more settled. 

Phoebe started steroids and one of the study drugs again on Friday and she will receive them both for the next four days. In the past they have made her tired, sad and depressed. 

One day at a time. 

Go Phoebe go. 

"J is for Joy" - the ABC wall at St.Jude

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