Thursday, October 27, 2005

Home with his web-slinger

In just a few short weeks the familiar green of the roadside trees has turned to a colorful bowl of Trix.

I think half of you know it was an early start today. We had to be in IR (interventional radiology, where Josh gets his spinals) by 6:00! They don’t actually start the procedure until 8, but we have to go early for check-in, port access, meet with anesthesiologist, weight, vitals, so on and so on.

The LP went well, but afterward…YIKES! Let’s add another med to the NO_NOT_USE list. Different anesth. Doing the procedure this week. A very nice woman, but as the post-op nurse described, they are like cooks, they may be cooking the same thing, but each one likes to use their own personal concoctions to achieve their flavor. Learn something new everyday, and today we learned NOT to use Sevoflurane on Joshua. You all have read that Josh has adverse reactions to Versed and Ativan, meds that are SUPPOSED to calm him down. Instead he goes into a rage. Same for sevo. Today’s doctor’s recipe consisted of 60[units] of propofol (which is “sleepy milk” injected thru his port) and sevo (which is administered via gas mask). Usually Josh gets 150-200[units] of sleepy milk and no gas. Jon and I were no sooner in the recovery waiting room, when the phone rang, telling us Josh was awake. In fact, Jon had just left to go down and get me a coffee. Usually Josh sleeps a good hour and they have to wake him up then call us back.

When I walked into recovery there were two nurses around his bed trying to console him. The minute I picked him up he started kicking me and screaming for his daddy. When dad got upstairs (which was actually only minutes but seemed like forever) and tried to hold him, he kicked, screamed and cried that he wanted down. But putting him down didn’t help either. We were afraid he would hurt himself trashing about on the floor or bed, wherever his choice of down was for the minute. So this is another inconsolable med that turns our baby into a temporary monster. The nurse describes it as his body reacting before his brain can catch up. Who knows, but it lasts about 30-45 minutes, a seeming eternity when you’re trying to comfort your child in every conceivable way. I remember the first time this happened, when we were still in-patient, the doctors and nurses blamed it on the versed, before quickly shutting the door behind them as they fled the room. The only thing I could do was sit there, hold him, rock him and try focus on anything but the screaming. Oh and protect my face and groin ;-)

Once his anger subsided enough that we could comfort him, we got him dressed so we could make our way down to clinic for the new chemo of this phase. Weigh-in nurse, Donna, had an awesome frog that she gave to Josh. His name is Floppy. Josh couldn’t wait to bring him home to show Grandma his very own frog. Now he’s just like her ;-)

So the new chemo, cytoxan, comes with LOTS of BIG warning stickers all over it. I guess this is one of the ones that can burn your skin if it comes in contact with it. Makes ya wonder what it does to the rest of you. Which brings me to my next point. Because this drug can cause bladder damage, Josh had to be WELL hydrated before being infused. So before he could even begin that chemo, we had to start a glucose drip that had to hang over 2 hours.

2 hours, 2 chocolate milks and 2 trips to the bathroom later, the cytoxan was hung. This was a 45-minute infusion. And once that poison was emptied into my son, they finished with AraC, which Josh has had before during induction (phase I), but this one was *only* a 15 minute drip.

All-in-all we were out of there by 2:30 and home just before 5. Did I mention that we had to be there by 6?

Did you know that the sun still isn’t up by 7 this time of year?

Tomorrow and over the weekend, a visiting nurse will come and administer the next 3 infusions of Josh’s AraC. In fact, when we left clinic, they left his port accessed so Nurse Emily, wont have to poke him, and will only have to de-access it on Sunday after his last dose – for this week. Next week we will start over.

Without sevo.

And without the bladder-burning cytoxan.

Josh thinks it’s cool that he still has his lumen attached. Though was a little confused as we walked down the hall and realized it was still swinging beneath his jacket. Of course he had to show it off to his sisters once we got home, and already used it to “shoot” them with his super webs! ‘Gamma-n-Gampa’ will come later with some med-tape so we can strap it down, in hopes to deter Nathan from ripping the thing out – or to rescue Spiderman from pulling it out himself.

Real quick, as I’m nearing my 5000 character limit to this entry… I wanted to comment that this is exactly why I have been putting off so many updates. I just don’t know when to shut up. Then once I do tap the novel out on the keys, it kills me to have to replace it with another. I really should learn to be more brief…

Friday, October 7, 2005

tired already

As the nurse said today,

"one visit closer to the end..."

I guess that's true. But with 3 years still ahead of us -- the end still seems so far away.

Sorry to everyone that comes for an update to find none.

I'm so tired lately. Suppose the 10 1/2-hour work days, then 3rd grade spelling, 5th grade english and 8th grade math are taking their toll on me. And I thought the homework in college was bad...

Nothing compared to Joshy's journey though.

I had a nice long update tapped out. But guess it's just not appropriate right now.

Too ominous.

Ha - ominously -- one of Halie's spelling words this week.

More visits. A couple more. Bottom line, the new chemo is taking it's own toll on Josh.

and I think I'm tired...

At the beginning of this phase, Josh's ANC started out near 3900. That measures his ability to fight infection. Josh's ANC hasnt been this high since diagnosis. So we started in a good position.

Even before his second dose of Doxorubicin he was down to 1500.

Anything under 1000, he is considered neutropenic and puts him at higher risk for infection.

This week his ANC is 700.

He is now neutropenic. Which means no visitors.

And he had yet his 3rd shot of Dox, so his count will continue to drop.

Next week they predict it will be under 500. Josh cant move on to the next half of this phase until his healthy cells fight back and rise above 1000 again.

A visiting nurse will be coming to the house to monitor his counts until they are high enough for us to return to Pittsburgh. Although, we may have to visit in between for a blood or platelet transfusion if his other counts continue to drop too.

I'm tired and Josh is waiting for me.

Thanks for checking in on us -- dont forget to sign the guestbook, it's encouraging to know someone is actually reading.