Thursday, May 19, 2005

Did I say that this was going to be easy?

Did I say that this was going to be easy?

I seem to remember saying that these High Dose Methotrexate infusions weren't really that bad... I take that back. This one's been pretty rough.

Abby's gone from sleepy to dopey and is now in the grumpy stage... I'm just plain sleepy. Let me explain.

Tuesday the Methotrexate infusion started in Denver, routine as always, good spinal tap, easy infusion and then back home. But from that night till now it's been anything but routine. Here's the general schedule of recent events:

Tuesday (sleepy)
12pm --- Methotrexate infusion, they start to put it all in and hook her up to the 2-liter bag for the next 24 hours.
3pm --- Home
6pm --- Methotrexate starts to be released by her system (i.e. Peeing)
8pm --- More Methotrexate coming out
10pm -- Metho out
12pm Metho out

Wednesday (Dopey)
2am yup... still coming
4am... I can't remember but I think I took her anyway
5:30am "where's this all come from?!"
9-10am.. Hallucinations of me outside her window and other funny visions
11am-Going back down to Denver
12pm-- Shivers/shakes at CHOA
4:30 leaves Choa
6pm, 8pm,10pm,12am.... "how big is your bladder girl?"

Thursday (Grumpy)
6am... Leucovorin rescue drug given... and yes... more pee:)
8am.. she doesn't feel good, heel pain, limps when walking.
10am.. 100 degree fever... going back down to Denver
12:30pm.. Blood infection found (must be a big one, usually they don't find a positive culture for several hours)
2pm.. Back on Vancomyacin (the only antibiotic left that can kill all bacterial infections)
3pm----> ? Who knows, They are still in Denver.

So as you can see, anything but normal. Currently the hallucinations are gone, the heel pain is still there but it may just have been a splinter or maybe the Vincristine shot from Tuesday, sometimes causes leg pain. She'll be on Vanco until they can run some more tests on the infection and see what else it will respond to. Once they find what it will respond to then they will switch her over to that one. The Broviac is most likely the source of the infections and since she has had three, they may take it out. Hopefully she can make it through the summer with this one in, through Delayed Intensification, DI. If she can make it through DI then they will take it out then and she will only have to get stuck with needles once a month or so, or we could have them put an under the skin line in, called a medo-port, we'll see.

So that's the update. Time to go get Anna, maybe I can't take a nap too. :)

Tuesday, May 17, 2005

This is Abby during the High Dose Methotrexate

This is Abby during the High Dose Methotrexate

Yep, that's her. Well, without the beard, less hair, no hat, smaller nose
and no cartoon styled cloths. or shoes. but the expression is the same..
Well mostly the same. Anyway, Abby is doing OK. Carrying around 2 liters
of fluids with you can't be fun nor getting yet another spinal tap I would
imagine. Yet even with all of that, she is still remarkably chipper.

It is fast approaching 10pm and I probably should have gone to bed awhile
ago seeing that it may be a long night of used Methotrexate fluid depositing
for the ole Abby, but then again I did have a triple shot of coffee at 3pm
so why should I complain. well actually if you must know, I didn't even have
that triple shot this afternoon. It sounded awfully good but I didn't have
the energy to go get one. Those Denver days tend to wipe you out. I wonder
if people that live in Denver are always wiped out? Hmmm.

Anyway, the spinal tap when well, only a little "owe" and then it was all
done. They always comment about how well she does with these taps compared
to other kids. I'm glad that she is so cooperative for them and me. They
don't even give her Vers-ed anymore because it was making her incredibly
weepy and not real fun to be around when it started to wear off. So the
only thing she gets is a topical pain killer and a little Fentanyl that
wears off pretty quickly after the tap. The infusion was fine, pretty
routine if it can be called so.

Her ANC is down to 650 but Dr. Smith wasn't too concerned. He was wearing a
Sponge Bob Square Pants tie. should I be concerned? :-) No, he even said
that Abby could come to Frontier's Graduation if we wanted, (Frontier
Academy is the High School I work at for those of you that don't know) so if
she is feeling up to it then I think we just may!

Well, since I didn't have that coffee I'm going to go to bed. I probably be
woken up in the next hour and then every couple after that but that's par
for the course. Part of me just wants to pull an all nighter and blog all
night long. But you wouldn't want to read that long of a post so off to bed
I go!

I'll probably look more like my little dwarf friend by the morning than Abby
will : )

Monday, May 16, 2005

2 down 2 to go... Methotrexate starts again

2 down 2 to go... Methotrexate starts again

Well here we are again, on the eve of another infusion.

I'm not too nervous about the whole thing this time, either because I
haven't had much time to think about it with school winding down and all of
our visitors or maybe I just really am getting to be OK with the whole
thing. maybe.

This whole infusion process really hasn't been too bad. Abby's counts are
up, somewhere near a normal kid for immunity last week and 1178 ANC today.
Really good like I said. She has been running more now, not as whining and
overall in good spirits. She even had a runny nose and cold last week and
still had enough energy to run and round in the yard with Anna! It really
lightens things up around here, seeing her being able to run around and be
more of a normal little girl and all. I wish she could have come to my
graduation ceremony, just finished my Masters, but we didn't want to chance
it so she stayed with a baby sitter and once again did great!

Anyway, like I said she is doing great. Tomorrow we will go back down to
Denver to CHOA and see Joanne and Dr. Smith. Abby loves seeing Joanne.
Even though she will give her a spinal tap tomorrow and hook her up to the
Methotrexate infusion and also give her Vincristine, Abby still loves to see
the nurses and doctors and even pretends to be them when we are at home.
I've plenty of my own pretend spinal taps and other procedures at home when
Abby pretends to be Joanne. Pretty cute actually. if you've never been
given a spinal tap by your 3 year old, I'd highly recommend it. :-)

Well that's all for now, good night.