on I was up super late last night. I had to administer Leucovorin to Benji at 1:20am, 60 hours after his lumbar puncture. Once the hour passed midnight, I made the decision to stay awake. I was nervous I wouldn’t wake up easily if I went to sleep. I checked into my online support group, knowing many moms… Continue Reading Day 470
on The newly increased dosage of steroids are in FULL effect, and Benji’s only taken five doses. I walked into the boys’ room this morning to wake them up after a gorgeous bridge walk, and Benji SHOT out of bed and said “GOODMORNINGMAMAILOVEYOU!!!!!” and sprang down his loft bed stairs to give me a tight squeeze… Continue Reading Day 469
on Benjamin began his third cycle of long term maintenance today. He woke up calmly and contently. He did not complain when he couldn’t eat breakfast. He did not complain when I placed numbing cream and dressing on his port site. He sat quietly in the car, resolute. His silence concerned me a little, but I bit my… Continue Reading Day 467
on I was awake much later than I intended last night. I created a facebook page for the Rainbow Star project. Within minutes, I had four requests for stars. High risk preB-cell ALL. Recurrent osteosarcoma which came back in his right lung. Inoperable. JPA grade 1 hypothalamus brain tumor. 4… Continue Reading Day 414
on We are en route to chilly northern Alabama, and everyone is happy and relatively healthy. Benji and I took one more morning “off,” just to be sure; he still felt poorly this morning and was super congested, and my sore throat was threatening to deepen into my chest. But one more morning of rest, oils… Continue Reading Day 385
on Benjamin stayed home from school today. He never reached fever status and I didn’t have to call the clinic, but he was still super congested and he just didn’t feel well. And he looked sick. His face was pale and he had dark red triangle patches under his eyes. He needed a day off. So… Continue Reading Day 384