Today is one of the hard ones. Alexander is getting his MRI done. As I sit in the hospital room waiting for him to return, I am thinking about what his radiation oncologist at St. Jude told us. “You are doing the right thing by considering the side effects of radiation before you consent, but all you’re going to care about in a few months…
This will be a short update, to be filed under “no news is good news.” Alexander finished his second cycle of chemotherapy without any fevers or unexpected trips to the hospital, and his mood and overall energy level have continued to improve. Right now, he is receiving his outpatient chemo infusion, having been inpatient last week. So far, so good. His counts are borderline low…
We’ve held our breath for the last week, the second week of the cycle. Last cycle, Alexander had a low-grade fever on Day 10 that landed us in the hospital for five nights, until his counts began to rise. That hospital stay disrupted Alexander’s sleep, his diet, and his verve. This cycle, we have avoided the fever, and every aspect of Alexander’s life has been…
Last week, Christy traveled to Phoenix for work. Her coworkers rallied around her and made a very generous donation to Rally, and a huge group of them participated in a run in Alexander’s honor. Once again, we felt so loved and supported. Thank you, Medtronic family! We had a great weekend with friends and family, including our last Red Stars game of the season, but…
I had a post all written out last week, giving encouraging news about Alexander’s ever-increasing energy levels after getting home from inpatient chemo. He was very tired the first few days, but Monday and Tuesday of last week, he seemed to be getting his appetite and his energy back. We knew his counts would drop, but we were hopeful that his lack of nausea and…
*DISCLAIMER* This was written just before Alexander was admitted to the hospital with a neutropenic fever. An update on that will follow shortly. Our first week of chemo is in the books. There were so many things about being in the hospital that we had almost forgotten about–the lack of sleep, the limited and questionable food options, the constant interruptions to check vitals and hook…
We are finally back on the treatment path. We checked in to Comer Children’s Hospital yesterday morning, expecting chemo to start by the afternoon. We waited for about 7 hours in a holding room before finally being admitted. During that time, Alexander’s port was accessed and he started getting fluids in preparation for the chemo drugs, which are metabolized by the liver. It’s important that…
Today was the last day of our inter-treatment period. We had great experiences with friends and family. Tomorrow, treatment starts again. We thought we were going to go to Lurie Children’s Hospital for treatment, but after some additional phone conversations, we decided to switch to Comer Children’s Hospital at the University of Chicago. That’s where we’ll be tomorrow for an MRI and lumbar puncture, which…
After much deliberation about the best options for Alexander and our whole family, we have decided to have Alexander’s chemotherapy done at Lurie Children’s Hospital in Chicago. St. Jude has been very good to us, and we would have a choice of two treatments (one published, one unpublished) if we were to return there. Lurie Children’s only offers us the published treatment option. We want…
The boost treatments are underway. Alexander’s wakeups have not been any different, though we tried skipping the Precedex and letting him wake up quicker. No luck. We have resigned to getting him out of the PACU quickly and letting him get fresh air. Once he eats and drinks and uses the bathroom, he improves. That may be all that helps. Only 2 weeks of sedation…
