What a day at the Heme-onc outpatient clinic is like
Subject: Avalon update for Nov 24, 2004
Hello everyone!
No, we haven't fallen off the face of the planet. We are still here, we've just been swamped.
The girls and I moved home about two weeks ago. (However, I just put the computer back
together yesterday.) OK, moved home may not exactly be accurate. This house is way too nice
to actually be my home!
Our downstairs has been completely renovated. Our family room has gone from icky pink
carpet, bare walls with holes, an unfinished patio door, a broken front door (from me falling
through it on crutches), and a broken and stained drop ceiling...to a pure work of art! The walls
look like suede, the wood floors are a breeze to clean, the ceiling is wood (stained to match the
floor), the new window and door are gorgeous and we even have crown molding. Wow!! Our
dining room walls are a mottled blue - a perfect match for a stained glass chandelier that we
had pre-remodel. I'm telling you, I feel like I live in a palace.
Ambrosia, however, doesn't agree. She keeps asking if "They can come back and put our old
house back". She often tells us she wants to "Go home to our old house." Yeah, its funny, but
I'm rather concerned about her decorating tastes. If she thinks the "old house" was prettier...we
may seriously have to consider some aesthetics counseling for her...
On to the important stuff, Avalon updates. I'm sure I've told several of you, I'm never sure how
to answer someone when they ask "How is Avalon doing?" We are all used to the patent
discourse..."How are you?" "Fine, thanks." Unfortunately, I really can't do that about Avalon.
I've gotten better about saying, "As well as you can expect, thank you." I'm really not trying to
be flip, its just that I can't figure out a way to politely say..."well, she feels blecky, her hair is
falling out, blah blah blah." You get the general idea. So, I'll just tell it like it is, and ask that you
forgive me if I'm too blunt.
First of all, let me try to tell you a little bit about how all of this chemo works. Right now, we go
to Children's Hospital Outpatient Hemetology-Oncology (Heme-Onc) clinic once a week. Our
schedule will change as Avalon moves through the different phases of her treatment. Clinic
days are slightly different if its just a chemo day, or if its a procedure day. "Procedures" are
bone marrow aspirations and lumbar punctures. Both of those require sedation, so Avalon is
not allowed to eat for 6 hours before the procedure. The rough part is that you never have an
exact time for your procedure. We roughly estimate that it should happen 2 hours after she
gets there - but often the wait is 3-4 hours after her appointment time, which means the poor
little kid starves for 8+ hours.
Clinic days start at home one hour before her appointment time. At home, we put Emla cream
on her chest, over her sub-cutaneous port. We cover the cream with a special bandage and
make note of the time. When we arrive at the clinic, we sign in and tell them what time the
cream went on. The Emla cream numbs her skin so that it doesn't hurt as much when they
access her port.
After we sign in, we wait to be called into the first room. They take us to a room and check
Avalon's height, weight, blood pressure and temperature, then back to the waiting room. Next,
a nurse comes and takes us back to the IV room, where they "access" Avalon's port.
"Accessing" means they put a 3/4 inch long needle into her chest, into the "port". The needle is
attached to a tube and a small valve that they use to take blood and to push drugs in. Next,
they draw blood for the necessary labs. Then, back to the waiting room.
The next stop is an exam room. Most exams are done by our nurse practitioner, Diane. Diane
does a full physical, from head to toe and back. These are no 5 minute once overs, she's
taken up to an hour with me before. She knows these kids inside and out and asks a million
questions each week. She is also our one-stop wealth of information about everything chemo
and cancer related. If she doesn't know it, by golly she'll stop the earth rotating until she finds it
out. Diane has invested untold amounts of time desperately trying to convince Avalon to like
her. Shockingly, Nick reports that she is finally making some progress. At least, Avalon has quit
hiding from her.
After her exam, its back to the waiting room. Nothing further can be done until we get our lab
report. Depending on her "numbers", her chemo may be changed or canceled, or a procedure
may be canceled or added. Its all very dependent on blood results. This stage of the waiting
game is the longest - it can take several hours to get your results.
Once the results are in, you head to either the procedure room, or the IV room, some days to
both of them - one after the other. Then, you are finally cleared to go home! All in all, is usually
at least a 5 hour ordeal - sometimes more. If she were to need a transfusion - you can at least
3 hours to that. Blood is not a quick fix by any stretch.
I take Avalon to the clinic on just-chemo days. Nick does procedure days. Since I am still
nursing her, having me hold and carry her on procedure days is just rather mean. Its almost
like taping a Hershey bar to the nose of a Pre-menstral woman and telling her not to touch it
for 8 hours.
Chemo therapy is divided into phases, according to what the drug regimens and time
schedules are. The first 28 days were called "Induction". During Induction, Avalon had 2
lumbar punctures (spinal taps) during which they drew off spinal fluid and inserted a
chemotherapy drug directly into the spine (called interthecal therapy). Both of her draws were
negative for leukemia in the spinal column. (YAYYY!!!) Avalon also had 2 or 3 bone marrow
aspirations (I forget) during induction. Her drugs consisted of weekly IV chemo of Vincristine,
an injection of a different chemo drug, twice daily doses of steroids and the two interthecal
treatments. She also took a stool softener and Zantac twice a day, to combat the effects of the
drug on her stomach and digestive processes. As a result of the leukemia and chemo
processes, Avalon required three blood transfusions and two platelet transfusions while we
were still in the hospital. We've been lucky that her numbers have held well and so far, she
hasn't needed any outpatient. We are on borrowed time though - transfusions are a matter of
course with these guys.
The steroids caused Avalon to be cranky, sleepless, constantly hungry, and to swell up like a
Macy's balloon. I can can tell you we did several happy dances the day we ended steroid
therapy. She will go on and off of them over the next few years, but that was our longest
course of them. Yippee skippee - those things were the pits!
Avalon is currently in week 3 of her second phase of chemo, "Consolidation". This phase
concentrates on keeping the leukemia out of her spine (a favorite hiding place). We started the
month with a bone marrow aspiration to make sure that she had responded well to Induction
treatment. Good news!!! Her bone marrow showed 0% leukemia - exactly what we wanted. She
is considered in remission now. The next 26 months is fighting to keep her that way.
Unfortunately, since Consolidation is concentrating on her spinal fluid, it means weekly lumbar
punctures (spinal taps) and weekly interthecals. The first one was scheduled for the same day
as the bone marrow aspiration mentioned above, but it didn't go well. When they tried to
access her port, they couldn't draw blood. It took four pokes in the chest to be able to draw
blood - it was the beginning of a very bad day for her. The bone marrow aspiration went fine.
But when the nurse practitioner (not ours, a different one) tried to do the L.P.. - she stuck her
twice and got nothing. At that point she gave up and called in the doctor on duty. He stuck her
5 more times! Yes, folks, that is 7 holes in her spine, with no draw. They gave up and sent Nick
home - with instructions to come back on Thursday. The poor kid had to starve again just two
days later, and go back for more pincushion practice. Thankfully, Thursday's L.P. was flawless.
Our only problem is that her port would not give blood again. In fact, they got no blood from it
again the following week. Keep your fingers crossed for her - I really don't want to have to
replace the thing this early in the game.
The good news about Consolidation is that her IV chemo is down to only once a month. Since
the Vincristine is responsible for most of her hair loss - it has slowed down from what it was a
few weeks ago. Frankly, she kind of looks like she has mange at the moment. Add the
patchiness to her normally, wild, curly, sticky-outie hair type, and she is rather comical.
Thankfully, she is good about wearing hats - it keeps her a bit warmer since she has "low hair"
now. ("Low hair" was coined by Ambrosia with regard to Pappo's thinning hair. The family has
just kept it. )
The oral steroids have been replaced by oral chemo. Its nice that she only has to take it and
the stool softener once a day now. The zantac is gone except for weekends. On weekends,
she takes twice daily doses of a high-test antibiotic. The antibiotic is a preventative to keep
really nasty things from getting a good foothold in her lungs. Unfortunately, the antibiotic tears
up her stomach similar to the steroids, so we have definitely learned to rely on Zantac again on
the weekends.
We have one more week in Consolidation, then we start Interim Maintenance. I.M. is either 6 or
8 months long, depending on what group we get put into. I'm not sure how the drugs change
then, I'll let you know at some point. There you go, more medical info than I'm sure you wanted.
Forgive me, but its easier to get everyone up to speed at once, so it doesn't sound like I'm
speaking a foreign language when you ask what's going on with her.
Now you know the procedures and drugs, but what about Avalon? Well, Consolidation has
been a wonderful honeymoon period. Avalon's personality returned to her normal, sunny
disposition, sans steroids. She lost a lot of the steroid swelling as well. She still cannot walk on
her own, and still tires easily. But she has learned to zip around in her walker at warp speed!
The physical therapist was concerned that the walker would make her lazy. Horse pucky! Quite
the opposite has happened. Avalon uses the walker like an elderly person would use a medical
walker. She stands up and walks, with her hands in front of her - pushing the walker, and using
it for balance. When her knees buckle, she safely just "sits" down in the walker, rests a minute,
and then gets right back up to walk some more. If she gets herself wedged, she reaches out,
grabs the sides of the walker and lifts and moves it to where she needs too. She looks like a
grand southern dame - negotiating a garden tour in her hoop skirt. As a matter of fact, she has
gotten rather adept at getting into things, even with the walker. She has figured out how to
position the walker so that she can still open cabinets and empty them in 20 seconds flat. Not
to mention how quickly she can clear a book shelf, toy basket or doll cupboard. Basically, kids
will be kids, even if they have "accoutrements".
My favorite news is that Avalon is starting to find her voice again. We're back up to a dozen
words or so. No, its nothing like before she got sick, but my heart leaps every time I hear
Momma. We're getting there, s l o w l y...but I have all the time and patience in the world.
Actually, Avalon has caught me by surprise a couple of times. She's such a mini-mo, and since
she has quit walking and talking, its actually easy to forget how old she really is. But trust me,
that little brain is still very much 18 months old. She has pulled of couple of jokes and stunts
that have just floored me, until I realize that she is still 18 mo - regardless of outward
appearances. Oh yes, she's figuring out how to play all of us like the violins we are.
So, there you have it - Avalon's update. I do apologize to all of you who have tried to reach us
the past few weeks. The computer was very low on the priority list, so I kind of became invisible
in its absence. As with any of our emails, you are welcome to share this letter with anyone you
know who has expressed an interest in Avalon. I know in my soul that everyone's collective
prayers, postive thoughts and good will have been the driving force to our good fortune with
Avalon. Every step she takes toward healing is a testimony to the good hearts of our friends,
your friends, and the strangers out there willing to extend their faith to our baby. As usual, I
hold you all close to my heart and send you long distance hugs.
Thank you all for your love and support.
Love,
Alicia
