On being loud for Wes
Everything about this experience is new to me. I’ve never had serious health problems and haven’t had to deal with the health care system in any significant way in my life – even Wesley’s...
Monthly Archive: December 2018
Long Beach loves Wes
When we left Long Beach almost a year ago we knew we were moving away from a huge extended family – Stephanie, in particular, had built so many enduring friendships across the city thanks...
A qualified success
Friday we both went to King of Prussia with Wesley for an important discussion with the team about his Peg reactions and the path ahead now, as well as his regular sedated LP (lumbar...
Another bad Peg reaction
Today we went down to the main CHOP campus in Philly to attempt to give Wes the PEG (PEG-L-asparaginase) chemo that he had an allergic reaction to on Friday. The substitute chemo (Erwinia) wasn’t...
Anaphylaxis
We are heading to Philadelphia to CHOP this morning for Wes’ first chemo since he had a bad reaction to PEG last week. Because of a critical shortage in the alternative drug, Erwinase, the...
Allergies and short supplies
Friday was chemo day in King of Prussia – mom and Wes left the house early as usual for their third and last trip to the clinic this week. After last week’s minor setback...
A hard day and uncertain next steps
Yesterday was one of our hardest days yet. We went in for Wes’ sedated spinal injection of methotrexate (chemo) after getting derailed last week. He was NPO, which is usually very stressful and he...
Jerk or cancer patient? Maybe both.
The truth is that in between chemo, when he’s not being poked and prodded by someone, Wes is just a kid like most. He lacks that sense of existential dread that haunts us as...
Feeding the beast
Keeping a child well fed is one of the most basic functions of parenthood. Wes breastfed until after 2 and until he weened had really never eaten much besides – he never had formula...