Going Home

Our journey home

Going home was different than we thought it would be. There were moments in the last 13 days where going home didn't seem like a reality. Knowing that life would be different was easier to think about at the hospital where we had help and support. In the last 24 hours as we prepared, the reality of it happening became sort of scary to come home. Thoughts about not knowing how to take care of our daughters and how to keep them both safe started to take over.

This morning we waited for Dr Huynh to come see us and tell us everything would be okay, but it didn't quite happen that way. Dr Huynh is great because she tells us the truth, the reality, is optimistic and hopeful, but real. She told us that the genetic mismatch that they found in Sinatra, MLL, is serious and the reason this genetic mismatch puts Sinatra instantly in the very high risk category is because both the cure rate drops and the relapse rate, increases pretty significantly. She also said that the Minimum Residual Disease (MRD) test we have at the end of the 29 days of treatment will help determine how well Sinatra is going to do fighting this and what our path for treatment will continue to be. She mentioned the words bone marrow transplant for the first time as a possibility, and we began to think about how our other daughter could be impacted in all of this. Needless to say we are on pins and needles, biting our nails, crossing our fingers, throwing salt over our shoulder and anything else possible until we get the MRD after the 29th day.

The good news is Sinatra's ANC today was the best it's been since we have been diagnosed at 1392 and that means she is doing well right now and the chemo is working. She is active, eating well, and she looks great. Her cheeks are even starting to puff up a bit!

When we arrived home we came to a warm welcome, and as we spent time together as a family again everything seemed so normal and it was easy to forget that Sinatra was sick. We said to each other a few times, "its crazy to look at her and know she has cancer." As we finished dinner and got ready for bed, we almost forgot to give her her medicine. 

Adjusting to the new normal is going to be tough. But the four of us going to bed all under the same roof has never felt more precious and we didn't realize how much we take our health and blessings for granted. 

We will begin tomorrow with new perspective and appreciation.