This email is a perfect representation of our life...weird to the end...
Avalon began the second half of Delayed Intensification on
Thursday. This phase consists of two weeks of non-stop drugs,
followed by at least two weeks of resting, to regain blood values.
Thursday's visit began like normal, with Avalon being accessed.
From there, it took a bit of a different turn. Normally, she's
accessed, blood is drawn for testing, and she waits for her exam
and bloodwork results. On Thursday, she was "plugged in" to an
IV of saline, immediately following access. The saline was to make
sure she was super-hydrated. To test her level of hydration, they
also put cotton balls in her diaper to catch urine for a culture. The
chemo infusion she received Thursday, could not be done until
her urine results were at a certain dilution, to avoid damaging her
bladder. In addition, she had to receive the IV fluids for 4 hours
after the infusion. Thank goodness, this is a one-time-only thing.
As if all of that didn't make her day "fun" enough...she also had a
lumbar puncture (spinal tap) and spinal chemo on Thursday.
Normally, procedure days are "Daddy-days". However, we both
went to clinic in the morning, because we had to learn how to give
her chemo at home. Yep! You read that right. We are
administering chemo through her port at home this weekend. Yes,
its a bit freaky.
The chemo agent is so toxic we have to be gowned and gloved to
administer it. Not to mention the fact that each dose comes with a
"chemo pad" to lay the syringes on to prevent any possible
contamination of anything with the drug. We even have a toxic
chemical spill kit - in case something catastrophic happens. All of
the trash associated with these treatments, is considered "toxic
waste" and must be disposed of in a special chemo waste
container. My favorite part is that the container is called the
"Chemo-gator". Somebody, somewhere, has a righteously good
sense of humor.
I vacillate back and forth between being horrified that we're putting
this "Dangerous! Toxic chemicals!" stuff into our tiny person, to
being incredibly amused at our life. I took the picture of our
mantle for just that reason. OK, seriously...how many families
have a sharps disposal container, hazardous chemical disposal
container, and Easter decorations on their mantle? Its a perfect
still life to represent our lives. We're in the midst of a medical
nightmare, but the fact is, life goes on. Kids are still kids - and
they still need the normalcy of "Hop hops" and eggs. If we didn't
realize the lunacy of all of this and laugh about it - we'd all be as
bald as she is.
I also included the "port pictures" with this email for the same
reason. Avalon sees her "tubies" as part of her, like labeling her
ears, nose, foot, etc. When she needs a treatment, we ask her to
get her tubie for us, and she reaches into her outfit and holds it
out as in the one picture. When we were just doing antibiotics, we
even let her hold the port for the saline and heparin infusions.
Since this chemo stuff is so scary - we don't let her touch it at all
during the process. When everything is done, she says, "All
done! Snap, snap!" and tucks her tubie back in her outfit and
demands to be zipped or "snapped" up. Its all pretty
straightforward to her. In fact, we actually have a heck of a lot
more drama changing her diaper than giving her infusions.
Our only true problem is that Avalon's skin has begun seriously
reacting to the adhesive on the port dressings. She's been
accessed and de-accessed so often in the past month, that she
has overlapping raw rectangles on her chest (where the adhesive
has ripped off skin). She's become darned cranky, and
unfathomably loud about anyone touching her port or dressing.
Frankly, I don't blame her one whit. The nurses all categorically
agree with our decision to take her in to the hospital Sunday night
to be de-accessed. We want them to be the bad guys - not us.
As you may have guessed, if she's being de-accessed on Sunday,
it means we're done with infusions then. Well, at least for a few
days. On Thursday, she's back in clinic - and we start the entire
game all over again. Whoopee. By the way, lest you think all of
this sounds to easy...Avalon is also taking a daily oral chemo
during this two week period. That brings her total score for
Thursday to: spinal chemo, 2 separate infusion chemos at the
hospital (Cytoxin and Ara-c), and a new oral chemo, Thiaguanine.
All into her tiny little 20 lb body. How's that for stinky?
And yet, check out that smile on my nakey "port-baby". She may
be a medical montage, but she's still a soon-to-be-two-year-old
Ham! She'll smile at a camera, no matter how blecky she is.
She's got to be 10% little girl...90% cheesey ham.
So far, this week hasn't wrecked too much havoc with her. As long
as we stay on top of the anti-nausea meds, she seems to be doing
alright. She's a bit slow today, not very active - but she is playing
dollies with her sissies. Keep your fingers crossed that it doesn't
get too much worse than this. I'd love to buck the system and
have this be a smoother ride than they predict.
One last note, obviously - you finally get to see Nick's "hair". We
haven't had time to finish shaving him to the skin yet. I think we're
going to attempt that tonight. In the meantime, Avalon loves his
"fuzz". She rubs his head every chance she gets!
Enjoy your weekend, and may the bunny bounce your way!
Love to ALL of you,
Alicia, Nick, Aurora, Ambrosia, and Avalon
Avalon's Army of Angels
|March 26, 2005
Doing chemotherapy at home