Robyn and Ashley went and hung with Charley yesterday for a few hours. He’s 3 pounds 5 oz now! The drs say this is right on track with what he’d be in the womb at this stage of development – meaning he’s doing GREAT. He had the surgery to close the heart murmur on Monday, and it went beautifully. He had another surgery Wednesday to address his shunt – the sub-galean one he had from last week was not working very well. Which we’re completely fine with – this new shunt will be his permanent one, and leaves no visible difference in him. The sub-galean one gave him an alien-shaped head. 😀
He looks great. His color is getting more natural, his shape is good, his whole self looks bigger… and they’ll start feeding him next week, little bits at a time. Charley is good.
In a funny glimpse into how cancer affects our mindsets, Ezra has been fussy all last night and this morning. We were getting worried and going over all the possible issues as he kept becoming more and more fussy – could there be cancer in his bones still frustrating him as it did early on? Are his blood counts too low? Is the surgery site not healing correctly? Did a clamp come off a vein where the tumor was removed?
Well… we found the issue. He was constipated. 😀 A little laxative, a little exertion… a fine baby. 😉 Ah, to only be worried about typical child issues…
Ezra is doing good as well. The couple weeks after chemo he always has to get shots from me each night, and he sure doesn’t like those. While we ARE home for a month, that month will still get a lot of hospital visits – twice weekly for labs, and the the scans gets crazy. Let me show you an example of a scans week for us – this starts May 1st:
Monday – St Joes at 8am for a 9am scan in Nuclear Med. Ezra can’t eat from 3am the night before til 11am that day. Babies are much more fussy without food than you and I are. He’ll be under anesthesia.
Tuesday – off. Busch Gardens?
Wednesday – 11am-1pm, hospital for an injection of radioactive material into him for scans over the next 48 hours. Ok to eat food. The needle they inject with comes in a lead lunch box and is sheathed in a lead-encased syringe.
Thursday – 11am-4pm scan of how yesterday’s material is distributing throughout his body (it’s “a compound that is selectively absorbed by certain types of nervous tissue, including neuroblastoma cells”). Anesthesia. No food for Ezra from 5am-4pm.
Friday – 10am-4pm, multiple scans and a bone marrow aspiration. All under anesthesia. No food for Ezra from 6am-4pm.
Weekend off.
Monday – 10am-3pm, scans and injections. Anesthesia from 1-3. No food for Ezra from 7am-4pm.
Whew. Then end of May we’ll have scans to get ready for transplant. Then end of May we’ll go into stem cell transplant for 3-5 weeks at All Childrens… getting close. 😀
Then… we’ll finally all be home!
I’d like to share a little reflection I sent to someone earlier today.. the support and love we’ve been shown through this whole ordeal has increased our faith as much if not more than the people who keep telling us our faith has inspired them. It’s strange – from within the situation, both Robyn and I feel weak and weary, although sure of God’s grace and power to heal and sustain. We hear so often how our strength is encouraging – and yet we feel so inadequate sometimes. We hold on to promises like in our weakness He is strong, and have seen such a deeper intimacy in our own relationships with God, as well as in our relationship with each other. The deeper the hurt and questions we have with God, the deeper our understanding and connection to Him grows. Its a hauntingly beautiful situation. Many of the strongest metals in the world are formed with intense heat treatment. That’s about where we’re at.
You guys are all incredible…
