on I woke up before the sun today to help Banyan get ready for yet another adventure. He was invited to drift down the Rainbow River in an inner tube, watching the fish through his mask in the crystal clear water and picnicking with his boys in this last week before middle school. It was a wonderful opportunity… Continue Reading Day 229
on We slept in this morning. I stayed up late last night to be present when Benji’s methotrexate finished dripping and his blood was drawn. Jackie, one of our favorite night nurses, did all of this without waking Benjamin. It was such a relief to see nothing but clear, hydrating saline entering his body after she… Continue Reading Day 167
on True to the form of these Interim Maintenance hospital stays, Benjamin woke up on day two feeling nauseous. He vomited twice in quick succession. He knows, without a doubt, that the methotrexate is to blame; just the sight of the neon liquid is now a visual trigger for him. He avoids looking at his tubes,… Continue Reading Day 166
on The hospital bags are packed and waiting near the front door. The Scopolomine patch is placed securely behind Benjamin’s left ear. The children are sleeping soundly, ready for our trip over the bridge in the morning. And I am finding that my cheeks still hurt after a day that was full to the brim with… Continue Reading Day 164
on I lingered in bed this morning long after I woke up, reveling in the sounds of my boys playing together. This morning there was no fighting. There was the excitement and giddiness that comes when we are all freshly home, together again. Benjamin felt good during the morning and early afternoon. We kept him hydrated. He… Continue Reading Day 154
on I went to bed early and slept in late, so happy to be in my own bed. It was a blissfully normal Saturday. Lunch, birthday party, appliance shopping, neighbor’s pool, stormy trip to the beach, ice cream cones. We have happy boys who are settling in with a movie on a rainy night. Benjamin’s last… Continue Reading Day 142