Day 424

Benjamin had a follow-up visit with cardiology today. It was an appointment I scheduled months ago, as part of our arrangement to check his suspected patent ductus arteriosus (PDA) annually, and also as a matter of routine following the frontline months. Several of the chemotherapy medicines (doxorubicin most notoriously) can be cardiotoxic. It was time… Continue Reading Day 424

Day 200

Benjamin slept extremely well in his new bed. He was the last to rise in the house. We made breakfast, packed lunch, and headed to All Children’s. His attitude was terrific. We finished the Charlotte’s Web audiobook last week, so he chose a new one today: The Lion, The Witch and The Wardrobe. An excellent… Continue Reading Day 200

Day 199

From the time we woke up until _____ (we’re still going), we worked on Project Kids’ Room Renovation 2015. It has been such a productive day, and for the first time in weeks months, Benjamin is sound asleep in his own bed. He knows there will always be space for him in our room, when… Continue Reading Day 199

Day 193

Today was a challenging day. I am grateful once again for this space to sort it out. I had to work harder than usual to stay positive today, and I know that mostly it’s because I’m feeling completely exhausted. Benjamin was my path to holding it together. There is no other option. “One day closer” is becoming my… Continue Reading Day 193