Day 642/14

Benjamin’s reinduction phase is halfway complete. He took his last dose of Dexamethasone tonight. His allopurinol has been discontinued because his uric acid has stabilized, as has his phosphorous, sodium and calcium. His internal rapid response team is backing off a little, making way for the next line of defense. Things feel a little less… Continue Reading Day 642/14

Day 608

Both boys were healthy and ready to go to school this morning. Mike was out the door before the sun rose. I, however, woke up with Benjamin’s cold. I got the kids off to school safely, texted Benji’s teacher to fill her in on the platelet and steroid situation, and promptly returned to bed. By… Continue Reading Day 608

Day 607

We got home last night this morning at 3am. Benjamin went through the highly invasive emergency room protocol: port access, peripheral poking and blood draw, insanely sticky nodes on his chest, prophylactic intravenous antibiotics, a bolus of saline, a chest x-ray, and a respiratory viral swab that went way, way too far up the nasal… Continue Reading Day 607

Day 581

Our bags are packed and our alarms are set. We leave for Camp Highlands in the morning. This will be Benji’s first flight since he was diagnosed. I am so excited. I had a crazy case of food poisoning I had to get past this morning. I’m so thankful it was over quickly. Benjamin was… Continue Reading Day 581