Day +33: Sarah Goes Home / Entering a New Phase

Bubble Parade

This news is a little late coming to the blog, but Sarah was released from the hospital today!

You can imagine she has been doing pretty good at the hospital over the last several days. She finished her antibiotics for the pneumonia Monday and hasn't had a low level fever for ~4 days. Her oxygen saturation is back to normal too. Her blood counts continue to rise so engraftment is seemingly behind us too.

She went home taking 7 different medications including some nausea meds as needed. She will also be getting hydration via her central line for 10 hours every night until she gets the fluids she needs orally. She is drinking close to half what she needs to right now. Still not eating, but now that she is off the Total Parenteral Nutrition (TPN) her appetite should return soon. The doctors are mostly worried about her getting enough fluids not the food so much.

We take Sarah back to the hospital tomorrow AM for an outpatient visit. Seems a little silly to go back so soon, but at least we leave the same day. She visits the hospital every ~3 days for now.

Sarah has a lot of fatigue which we hope will diminish greatly soon. Fatigue is a common condition after a BMT, so we will try not to worry too much is it takes a while to improve.

The nurses give the kids a "bubble parade" when they are released off the BMT ward. Sarah has watched a lot of other kids have their bubble parade and really liked her turn under the bubbles.

Today was a huge milestone for Sarah and her journey with this illness. We enter maintenance mode now and hopefully that's where we'll stay until Sarah recovers. I'll be posting Sarah's progress once or twice a week and on occasion as she moves along. I know we as a family and Sarah specifically have a long road to recovery.

In this stage, infections for Sarah can be life threatening so, we'll be watching for any signs of infection closely and doing what we can to prevent them. We'll also be watching, but hopefully not dwelling on, signs of a relapse of Sarah's cancer. I will be talking with Sarah's doctors regarding monitoring for relapse and provide an update on how this is done on a future posting.

Please pray that Sarah will avoid infections or other BMT related complications and she will not relapse with the original cancer. I thank God for his kindness and mercy and all the things he has been doing in our lives (and I believe others lives) through all this. I'll make a point of sharing some of these things in a future blog. And, thank you for your prayers for Sarah and our family. They do not fall on deaf ears.

-Ben

Isaiah 54:7-16

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