on 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
on At 12:45am, I made toast with butter and honey for Benjamin, who woke up crying of hunger. At 6:45am, I made him tuna and egg salad sandwiches with mango on the side, another urgent request. At 7:30am, we were sitting at the dining room table. He was eating leftover ribs, and I was mixing up… Continue Reading Day 207
on Benjamin has taken his last dose of Dexamethasone until long term maintenance. We won’t see the steroid again any sooner than November, and I will not be missing it. I was so grateful to empty that pill box tonight. I had to remind myself to give thanks for the medicine and its role in Benji’s… Continue Reading Day 206
on 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
on 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
on 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