Ramping up for Methotrexate #2

Here is a picture of Abby with her Methotrexate infusion bag. I don't know why they have to color it this mountian dew/sci-fi green yellow color but they do. I asked our nurse Jo Ann about it an she said they are all dyed different colors. I also asked her if any were colored blue or purple and she looked me and seriously said, "there's blue... but don't get the blue one, you don't want her to be getting the blue one." Kinda scary don't you think? I mean Neo took the blue one in the Matrix and he turned out fine... Hmmm... Well, pray that I don't have to blog about the "blue one" any time during this process.

This last week has been so much better than the first week of the High Dose Methotrexate (HDM). Abby hasn't had to wear a backpack full or Methotrexate nor any fluid... 2-liters, that is about how much it is when it is full so 3pm - bedtime probably feels like she is walking on Mars or wearing a heavy rocket pack on her back. The hardwood floors make it a bit better as she can slide it around behind her buy pulling the arm strap of the back pack.

I can't say that I'm excited for this every other week HDM treatment but maybe this is exactly the treatment that will keep the cancer from returning by getting those last subborn cells. We also are dreading the Delayed Intesifycation (DI) phase after this but at least it is in the summer. I'm think we are going to get a nice big hammock to hang somewhere in the shade so that when she isn't feeling up to walking around we can just go relax in the back yard. She also seems to like to garden, or at least dig in the dirt, so maybe that will take her mind off of the DI side-effects this summer too. Who knows, one day at a time is how we take it around here, and since she is doing so good these days we're going to party while we can!

Going to play with my girls... more to come soon.

Just Plain Thankful!

Once again I sit down with no idea what to write but also with a longing to
convey my thoughts of this journey with you all. In short, Abby has been
doing really good, she hasn't been sleeping well for a few weeks, but last
night she did great and didn't wake at all. Other than the sleep, or lack
there of, and the low counts, Abby has been great!

I've been reading through the Leukemia and Lymphoma Society's bulletin board
of other parents with children with Leukemia and some of the side-effects
and hospital stays that other kids have had to go through are crazy and sad
to say the least. It's not to say that Abby won't be up there with a
similar story in the months to come but at least right now she is feeling
pretty good and I am soooo thankful!

We've just been feeling so thankful and blessed lately. Thankful for Abby's
condition in the midst of her treatment, I mean you know, she still has her
hair and acts/looks pretty normal. Thankful for all of our friends, family
and the support that they have brought us. You all moved us into our new
house, after remodeling it and painting EVERY room! Meals, so many meals,
people keep knocking on our door and dropping off food at the perfect time,
we even have a ton in the freezer just encase! You know, after coming back
from Denver from a full day of chemo for Abby and who has the energy to make
dinner? I sure don't. You all have saved my family from becoming
drive-thru junkies! Thank you! The checks, the fundraisers (that's another
blog entry), the prayers, (especially the prayers), and the tremendous
amounts of love and encouragement that you all have poured out in so many
ways from cards and packages to helping us move; people from town and from
far away have done so much. Since you've all done so much, a simple "thank
you" doesn't really seem to do it justice. but "Thank You!" Thank you.
Thank you. Thank you! We are humbled by your love and support.

Thank you all! More updates later this week as she moves on into Interim
Maintenance.

landslide of sorts

From 4/11/05 (we don't have the Internet at home anymore:-()

I have so many things that I want to write about that it seems a bit
daunting... I guess I'll just write in my random style and see what comes
out.

Right now I'm listening to "Landslide" by Fleetwood Mac. I don't think I
can vocalize why this song strikes me so much, it definitely isn't Stevie
Knicks voice, but it does. Old home video style footage that was never
taken of Abby plays in my head as the song moves on.

"I took my love and I took it down,

I climbed a mountain and I turned around,

and I saw my reflection in the snow covered hills

and the landslide brought me down.

Oh mirror in the sky what is love

can the child within my heart rise above,

can I sail through the changin' ocean tides,

can I handle the seasons of my life... mm mmm I don't know...

We'll I've been afraid of changing

cuz I built my life around you,

but times makes you bolder,

children get older and I'm getting older too."

Just a song that plays lots of video in my head when I hear it. So many fun
times that we are and have had with our little girls... yet I am afraid of
changing, and often those "ocean tides" have quite the undertow. Lately
it's been a lot better, so good that I sometimes forget that she is sick.
Almost like a day at the beach, the thing that is hard to explain is that I
used to just send her down to the metaphoric waves and I sat back; and while
still watching her, I enjoyed the sun. Now, even though it may look similar
from the outside, it is a lot different. Now I tend to still sit back and
watch her play in the proverbial waves of life, but instead of sitting back
to enjoy the sun, I'm sitting on the shore looking out past Abby to see if
or when the big set will break over her. When the Mega-Tsunami, as my
brother-in-law says, will come crashing to shore. Actually, I don't even
think that it is the Mega-Tsunamis that I'm really concerned with, it is
more just those waves sneak up to shore, looking just like a small wave yet
cresting out to a 10-footer when it breaks.

So that's me, and probably Tiffany to a large degree too. I think this
month it is really setting in that our daughter isn't just sick with a long
cold of sorts, but instead has a disease that has some real side-effects. I
know it may sound silly that it takes us so long to really internalize it
but for some reason it has.

And even though it has been a draining journey, we are very hopeful. The
treatment waves have been relatively small, and the waves of support from
all of you have been oh so large and constant. Thank you all so much for
being part of this journey with us, I don't know how people would do it with
out friends and family like all of you! We sure do appreciate all of you!
Thanks again!