Winding down consolidation
Now that he’s familiar with the steps leading up to either port or arm IV access his anxiety is going through the roof. For a 25lb kiddo it now takes three of us to...
Tagged: Consolidation
An update on Wes
It’s been a while – things have been largely quiet, and we’ve been settling in to new routines as I settle in to my leave from work. More about that someday. Wesley is currently...
Back on track
The past few weeks have been quiet after several hiccups transpired to delay Wes’ treatment, and there’s been so much going on – or not going on – that I’ve not been in a...
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...
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...