My over-active imagination never seems to miss an appointment. I tire of writing about this, now that Elijah’s chemo treatment is 2 years behind us, but apparently I need to work it out some more, or there’s some reason I’m not supposed to “get over it.” Last night, as I was trying to sleep, I…
Tag: hospital
One-Eyed, One-Hand Crying Little-People Feeder
I’m starting the year off with a bang. Friday night, I put my contacts in a case and discovered my saline bottle was empty. I grabbed an open bottle from under the sink thinking it was fairly fresh and squirted some in my case. Saturday morning, I discovered the painful way that the saline expired three years…
What I Didn’t Expect When I was Expecting
This post isn’t a fun family update, but it’s about our family in the sense that the experiences I have encountered with my boys, and the knowledge I have sought, frequently too late, has culminated in a set of opinions on pregnancy, labor, delivery, and the early days of child rearing. I did some thinking…
Mind the Gap: An Illustrated Tour of Elijah’s Split Lip
[Yes, this has graphic lip wound pictures, but I’ll be nice and put them at the end.] Not to be outshone by the birthday boy, Elijah took a tumble from the kitchen table, right at birthday cake time. I was on the other side of the table and didn’t see most of the fall. He…
Langerhans Cell Histiocytosis (LCH) – Rare Disease Day 2012
Since today is Rare Disease Day, I decided to recap our experience with Langerhans Cell Histiocytosis (LCH). Langerhans cells are immune cells that are normally present in the skin and mucosa. LCH happens when immature Langerhans cells behave like cancer cells – proliferating, and sometimes travelling through the blood stream to end up in other…
Our Baby Got De-ported!
Today is the day we celebrate Elijah officially being a normal, healthy boy, finally free of all physical “ties” to modern medicine. He had his surgery this morning to have his mediport removed, and he did great! We weren’t thrilled that he had to wait two hours past his scheduled time, but were forgiving because…
The Red Light Lady
Yesterday, as I sat in traffic near the children’s hospital, heading to Elijah’s CT scan, I remembered a minor event that happened last month when I was leaving the same hospital. It is really insignificant, but it stuck with me due to the range of emotions it provoked, from anger to embarrassment to humility.
Follow-Up CT Today (Updated)
UPDATE AT BOTTOM Today Elijah will have a CT Scan to follow up on some lesions in his lungs. They are probably scar tissue, but the doc is keeping an eye on them. Here is what we are looking at. Imagine you sliced the top of his body off at the shoulders and then looked…
It’s best to starve your PET
We rocked. We walked. We bounced. A boy knows what he wants. He tantrumed with all his might. I briefly calmed him with some warm water in a bottle. He doesn’t drink out of bottles, but he was happy to chew for a moment. I tried some TV. I walked some more, praying and praying he’d fall asleep. Finally, he did sleep, but it was only long enough for me to get dressed, sneak some food and wake him up to go.
Three, Two, One, Vinblastine
Yesterday (Friday), Elijah *finally* had his last planned dose of chemo. In three weeks, he will have a full-body PET scan, and if it is at least as good-looking as his previous scan, then he will go to an observation schedule of check-ups every month, then every three months, then 6 months, then annually. He…
S.A.H.M. Hill 