Wednesday, September 28, 2005


2 hours to Pittsburgh

2 hours in Pittsburgh

2 hours from Pittsburgh

...and we didn't even have a spinal tap.

It was postponed 'til this Thursday – tomorrow.

So we've had a couple clinic visits since the last update. As you can guess, things can get a little hectic around our house; just ask Grandma & Grandpa who came for a brief visit yesterday evening. I think they headed home and went straight for the Tylenol!

Anyway, Friday's visit went well. It was long considering we didn't have a spinal, and the appointment was late-day, so we didn’t get home ‘til nearly 7! But Josh got a new chemo, doxorubicin. For the first half of the infusion, the nurse sat with us to make sure nothing leaked from the line. We’ve been told this one can burn the skin. So far no side effects, except for the red-pee J but they said it would take a couple weeks for it to wear him down. Kinda like it will take a couple weeks before he loses his hair again.

Yes, Cookie Monster - I mean - the doctor, commented on how nice his hair was growing back, but warned that it would fall out it again this phase. Good news is, Josh has a cute baldhead and once it grows back, he probably wont lose it again. This week Josh will get more dox, and another spinal tap, on top of his regular chemos, which includes the vincristine, he also gets this in his port - an IV push – this one causes his fingers to go numb and his jaw to hurt.

As long as the first half of this phase doesn't drop his counts too low, Josh will continue to the second half, on schedule. I know I'm getting ahead of myself seeing as though we just started this phase, but I'm just putting that warning out there as the doctor put it to us. He says a lot of times the counts will drop dramatically and the kids will need platelets or blood transfusions to bring their counts back up to acceptable levels. He also cautioned us, that this is the phase where Josh might end up inpatient with fever and neutropenia, and gave us the run down of what to watch for and what to do when it does.

All that said, this past Monday Josh had another clinic visit. [And he goes again tomorrow] This was the first visit I didn't go. I was a little heartbroken, but Jon handled it well! The night before I made up all Josh's meds so that Jon wouldn't have to fuss with that. All four vials, including the squirt gun chaser, were laying neatly on his Spider Man plate in the morning, along side a tube of EMLA, the cream we usually put on Josh's port before we leave for P-burgh to numb it. It's supposed to be applied an hour or two beforehand to allow plenty of time to absorb into the skin & tissue. Josh still feels the pricks, but I imagine without it he would be even more miserable.

This time the cream went on his leg in preparation for the Peg shot. Jon slathered it on and covered it with Glad Press-N-Seal (as opposed to tape which Josh HATES having ripped off, even more than the pokes).

This, the sole purpose for Monday's visit… Can not be on the same day as the port chemos, can not be on the same day as the spinal chemo, and has to follow at least 3 days of steroids to help reduce any reactions.

Jon said they went straight back to a room, no paper work (yeah! for him) since we were just there 3 days prior. And since they only had to see a nurse, there was hardly a wait in the treatment room. Nurse Rose was right in, praised Jon on the EMLA masterpiece, and with Josh on daddy's lap, stuck the needle right in. He still cried (Josh not Jon ;-)), but when daddy requested the bin of toys, the nurse sent them to a playroom instead. Different than all the playrooms we’ve seen before. The pain from the shot was forgotten! Despite the bag of super heroes Josh packs every week, it never fails; someone else's toys are always better!

They got to stay A_WHOLE hour while the nurse watched for any adverse reactions. Good thing they even had big-boy toys for dad – a TV!

Soon after they head home with more meds and a mental list of things to watch for.

Josh's leg did break out in a rash as the day wore on, and not much swelling, but it was back to normal next day

Did I mention that Josh is back on the "Roids"? A 7-day pulse this time - and repeat again in two weeks. It has yet to affect his appetite, but I suspect any day now. Just about the time he ends the pulse...

Other than the normal inconveniences we've been enduring lately (the sometimes nausea and vomiting, the sometimes diarrhea, the brief finger numbness, the leg pain which causes his limp, and his irritable moodiness) Josh is doing pretty well. Oh, if you exclude his restless nights lately. For the past week or so, Josh has been waking up in the middle of the night crying. I don't know why. He doesn't have to go potty, he wont tell us if anything hurts, but with a few cuddles from mom or dad, he settles down enough to fall back to sleep like nothing happened.

Too bad mom and dad still remember. Especially when the 5 o'clock hour rolls around and the alarm starts to sound...

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