in General

Updates, Charley

I’m sitting in the PICU at Tampa General, looking out the window into the dark and quiet. It’s very peaceful, and I’m still feeling some of yesterday’s euphoria. I don’t mind.

Robyn is at home getting a much needed night’s sleep in our own bed before a long couple weeks of hospital, between recovery here and then a final round of chemo at St Joes for Ezra.

Ezra is doing great – he has a fever, which is not uncommon after surgery. They’ve done labs and don’t yet see any infection, so he’s just getting Motrin and Tylenol. The fever will break soon, all part of recovery. His counts are all good, and the nurses here in the PICU are good.

Charley is still stable over at All Children’s, and we’ve got a little more information on him. After round tableing, the drs over there agree it’s best to tackle the hydrocephalus (the swelling in his brain) before dealing with the PDA (heart murmur). They’ve scheduled his surgery for Monday, and will be putting in what’s called a reservoir. Eventually (before he comes home) he’ll need a shunt put in, and he will have one for life. The reservoir is a temporary solution while he is so small. What it does essentially is divert the excess fluid into a tiny bucket (reservoir) which they place in his head, and the neurosurgeon will then have to extract that excess every few days using a needle. When the shunt is put in the reservoir will be removed, and the shunt will simply redirect the fluid back into the body – completely ok. Surgery, surgery, surgery.

To clarify what Ezra’s tumor removal means in his treatment, he’s *not* yet “in remission.” There’s still the possibility of microscopic bits of cancer left, which the chemo round after the surgery recovery will attempt to clean up. The stem cell transplant will be the final step in his pre-remission treatment, and when we’ll be able to proudly say 100% he’s cancer free. From there there’s different after-care treatments we will do to make sure we keep him that way.

It’s Good Friday. This year brings our family a memorable Easter weekend. Jesus beat death this weekend a couple thousand years back. There’s some parallels, as I play the last 6 months back in my mind, between Jesus’ victory then and Ezra’s very current war against cancer. We stay resting in our faith.

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