quick update on how we all are

Haven’t updated for a bit, figured I’d give you guys a rundown of where we’re at now.

We’ve been home a little over a week now, and Ezra is settling in. He’s still not eating as much as before we went in, and has to get fluids every night overnight via a pump which goes in his bed with him. He also isn’t drinking a ton, which means we have to keep those fluids running until he gets his drinking up.

His attitude is great though, a little more clingy still, but almost back to normal! you can tell he’s still weak from the month of being in the hospital – he plays normal, but stops more often during his play to sit down. This will get back to normal as his appetite picks up and his muscles just normally build back up after a month of no use.

Charley is doing GREAT. He took out his own breathing tube a few days back, and is breathing well without it in now. He still needs oxygen, but no longer needs support with the physical aspect of breathing. They’re working on getting his oxygen needs down, and to teach him to eat – in the next 4-6 weeks we will most likely be able to take him home – possibly on oxygen, hopefully not. bringing a preemie as young as him home on oxygen is fairly common, though.

We get to see Charley a lot, since Ezra is still having labs done 3x a week at All Children’s. It’s a long drive but good to see Charley. It’s tough to find time to get work done, be at the hospital, keep the house running, and spend any time with Robyn at all – but we’re managing. By the time our head’s hit the pillows we usually feel like our entire body is screaming at us to rest… and we’ll do it again the next day.

Anyway… basically extremely busy, more tired than ever, but things are on an upwards swing and it feels good.


This morning the doctors came in and pronounced Ezra ready to go home.

He’s been getting a blood transfusion the last couple hours to get his hemoglobin levels a bit up, as they’d dropped. Then he’ll have some platelets running for about an hour to up those numbers so we’ll be ok til clinic on Monday. Those should finish out about 5:30 or so, and then… we’re free!!! He still needs labs done 3x a week the first few weeks – the chemo was so heavy it will be messing with his counts for months still. But as of 5:30 today… we’ll be on our way home.

Robyn is packing stuff up as I’m writing this (don’t worry, I’ll help as soon as I’m done here); we’re loading up a cart with a month’s worth of hospital life debris to bring on down to the car and get loaded up. Tonight there will be no vitals at midnight, none at 4 am, and none at 8 am. Sleep. Uninterrupted sleep.

I’m looking forward to moving this couch over here and seeing how much stuff Ezra has dropped behind it in the past 30 days. It’s been a lot.

He’s still at high risk for infection, he’s still a little weak, and he’s still pretty finicky… little things set him off easier at the moment. Once he’s been home a while that will change back, but right now he’s pretty much over living in a hospital. I mean, so am I. We’ll be battening down the hatches and laying low and hanging back and all those other slang and thesaurus references for not leaving the house much or bringing much else in.

We’ll have a pump in his room which we’ll still need to hook up each night to get him fluids and such. This will last 2-3 weeks. The chemo he was given is really toxic to the kidneys, and the kid only has one these days anyway. We keep a high amount of liquid going in to make sure it’s all being cleaned out well. That means we are trying to get him to drink as much as possible all day long (and he doesn’t really drink much anyway), and then the pump at night to supplement. Even with all that he’ll still need to be at the hospital 3-4 days per week for hours at a time to check his numbers and adjust what he’s got in him. “home” is not /exactly/ what everyone may picture the situation as – but it sure does beat this past month!

The nurses on 7 South at All Children’s Hospital deserve a great big “THANKS YOU DID GREAT!” They’ve been stellar folks – considerate, intelligent, and consistent. From the Matthews – thanks, all.

Charley is in the same place as last time… the steroids are working well. He needs less and less from the breathing machine. This coming Monday is actually his due date – and this past Tuesday was his 3 month birthday. How crazy is that?

See you guys around…

Day 28 – Home Soon

Ezra is doing great.

We had a scare there a little over a week ago. Ezra was retaining fluid and producing more so much that he was nearly unable to move, looked 9 months pregnant, and was in constant pain and having a lot of trouble breathing. I had mentioned this before, but after the last update it got to the point where Ezra actually had to be moved to the PICU (pediatric intensive care unit) from the room (literally WHILE I was in the air to San Francisco – what rough timing!), and hooked up to specialized oxygen machines to get him the air he needed. He was in the PICU 6 days, 3 of which I was there, and then the fluid retention finally went down and his breathing righted. There were points in there where his skin was so stretched he had spider veins all over – very scary, but the resolution wound up being spot on with no lasting effects, so amen to that.

He is now back to walking about, playing, talking, and being his flirtatious self with all the nurses. The drs say he can head home Wednesday at the earliest, Friday at the latest, barring anything crazy, which no one sees as a valid possibility. His eating is still very low, but he’s on IV nutrition too, which affects that. The chemo also has a months long effect on his taste buds, so he’ll find things he used to like bad tasting, and vice versa… for a while. The good news there is, they expect this from kids his age, and if he needs to go home with those IV nutritional supplements, he totally can. We have given Ezra nutrition via a nightly pump before, and may very well wind up doing the same now. Basically when he goes to bed at night at home, we’d hook up a pump to his line and h ang a bag, letting it run all night until he wakes up in the morning. Nothing like feeding your baby, eh?

So… basically… Ezra has nearly beat cancer. We still have a few after-care things to do over the next year, but he’ll most likely get scans to verify official remission here in the next month or so, maybe a little longer. He’s successfully gone through 6 rounds of chemo, 2 surgeries, hundreds of hours of labs, tubes in his chest, nose, and central line, stem cell transplant, and more. He’s got minor radiation, scans, labs, monoclonal antibodies (which are very painful, both to try to pronounce and to experience), and more ahead of him. But he’s nearly cancer-free, less than 9 months later. Amen.

Charley is doing well also. They started him on steroids this morning to prepare him for extubation (removing the breathing tube from him) in the next 2 weeks or so. The steroids give his lungs a boost of development, and help reduce any swelling in the throat which would happen from the tube being there so long. He still has a long road – 2-3 months left in the hospital minimum, but he’s doing good on progress.

Whew. I’m ready to be home. I forget what it looks like. Someone said we have a pool? Sounds nice in this heat….

Oh, side note – my trip to San Fran was good. I was there less than 48 hours, really only one day. We covered the new iPhone launch live, got a ton of traffic, and I’m trying to pre order one of them now… but Apple and AT&T are both, of course, down. I know you care. 😉

Day 19 – San Francisco

Alllll the way to day 19 here in the hospital.

The last 4-5 days have been the hardest for Ezra. As the white blood cells begin to come back, the entire body is already inflamed inside from the chemo going through there. The white blood cells all come in and go throughout the body to fight, and a by-product of this is a LOT of extra fluid in the body. His belly is huge now, which is a normal milestone in this treatment, but is causing him quite a bit of pain. He literally looks like he’s 9 months pregnant – stomach bulging, skin tight. His breathing is rapid and shallow because his belly is pressing up against his lungs, making it difficult to breathe. We don’t move him much, because even turning him hurts a lot.

The good news is this is all because his white blood cell counts ARE in fact coming back (which is one of the major points in this whole thing), so within the next 2-3 days the swelling should go down and his breathing will begin to come back to normal, and he will have an immune system working and rebuilding again.

Of course, Robyn is a /little/ frustrated with me since I’m actually leaving for San Francisco in about 2 hours. 😉 I’ll be there 48 hours on business, to provide live coverage for my site readers of Apple’s event where they’ll be launching the new iPhone. modmyi.com/live Monday at 10AM PST – you can watch too. 😉 I’ll be back Tuesday night, so Robyn is a trooper on her own the next couple days… love you, Robyn!

So… Ezra is FEELING worse, but doing better. If that makes sense…