Wednesday, April 20, 2005

Abby's High Dose Methotrexate Experiance... and ours

FW: Abby's High Dose Methotrexate Experiance... and ours

So I was going to post about how great this whole high-dose Methotrexate
experience has been, how the trips to Denver on Monday, Tuesday and
Wednesday were and are going fairly well and how we had fun visiting
downtown Denver, seeing the big building and all between appointments. and I
still will tell you all about that but it seems a bit overshadowed by the
fact that Abby woke up soaked on one side in Methotrexate (from coming
unplugged) and is now back down on her way to CHOA to sort it all out.

Now, don't freak out on me or anything, it's not as bad as it sounds. Yes,
Methotrexate in its liquid form does look a lot like an X-Files style sci-fi
experiment fluid with it's fluorescent hue and yellow-green appearance. and
yes it is also true that she came home with a backpack full of a liter and a
half of the stuff to get infused into her via her Broviac over 24 hrs. And
oh yes it also is true that Methotrexate, being a chemo agent is not the
nicest thing to wake up into a pool of, but lets be honest, they're
saturating her body with the stuff on the inside so a little on the outside
isn't that big of a deal.

Let me start with a quick synopsis of the week to bring us all back up to

Abby's counts were up to 500 ANC, 1500 Total white count, and 8.8 on the
hemoglobin front, platelet's are great somewhere around 140,000. With those
counts on Monday she qualified to start this next phase, IM. She also went
to the eye doctor, and got some really cool purple glasses to wear for a few
months but that is a different post. you can be praying that she won't have
to have surgery this summer and that her eyes will straighten out by
themselves before that has to be considered. anyway, I took her back Tuesday
morning for a spinal tap of Methotrexate, a IV push of Vincristine, and to
start the high-dose Methotrexate treatment. They hydrated her all morning,
got her urine up to a certain Ph and then started the Methotrexate pump.
This pump is the one that continuously infuses the Methotrexate into her
Broviac tube for 24 hours. They put the stuff in a big bag, and then put
the pump and the bag of fluid (1.5 liters) into a back pack the size of
Abby. So that is the scoop.

Now this backpack was way too huge and watching her try to walk around with
it, as comical as it could have been, was just too heartbreaking for me. So,
in my MacGyver style I mounted all of her mobile infusion kit, into a
strawberry shortcake backpack for her mobile roaming. Now imagine for a
moment being 28 pounds and trying to carry a 2-liter bottle of soda around
on your back. ya, not fun but it worked ok for the evening. I've got some
pictures; I'll have to post them for you.

Anyway, having all the fluid pumped into you makes a little girl want to
pee, and did she ever! I stopped counting after 1:30am, but we were up to 6
by then. So yes, once again, coffee is my friend. Trying to move all that
equipment and my sleepy little girl is a hard thing when you are well rested
and even harder by 5:30 in the morning with little sleep. That was the last
time I took her before I left to work and she was still dry then, so,
sometime between 5:30 and 7:30 this morning she came unplugged; it could
have been on that last potty break but who really knows. Tiffany got her up
and she was soaked on one side with Methotrexate as well as her bed,
actually the guest bed. Anyone still want to sleep in our guestroom. don't
worry about the glowing mattress :-) Just kiddin'. It only soaked the
sleeping bag a bit.

Tiffany called the on-call doc and the nurse and they told her what to do,
bath for Abby, wash the linens, and drive her down to Denver to fill the bag
up with what had been lost. So that's where she is going and speaking of
going, I have to go teach. Rest assured though, everything is fine, this
drug is relatively safe, and we have great doctors seeing us through this.
on the nerve front, well, we're a bit tired and worn down, probably stressed
too but we know we are being prayed for and are in good hands at CHOA.

Bye now!

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