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Our
Journey:
Journey:
Avalon's Army of Angels
| October 2, 2008 Heme-Onc check-up |
Avalon had a regular 2 month Heme-Onc check
up today. I don't know if I've explained this or not
- but leukemia kids are followed really closely -
for a ridiculously long time. Such is the life of a
cancer kid - whose cancer is part of a bodily
function, not just an extra tumor. Because our
kids' cancer is part of their immune response -
they are watched closely, for years.
ALL girls under go chemo for roughly 2 1/2
years. ALL boys - have an entire extra year on
top of that. Once you are off treatment (done
with chemo) - we all go back to the clinic for
follow-up check-ups. The schedule is: once a
month for the first year, once every two months
for the second year, once every three months for
the third year - and I'm not quite sure about after
that. I think every 6 months the 4th year, then
only yearly...but I'm not positive. Kind of crazy to
think about isn't it? Here she was, 17 months old
at diagnosis...and we knew we'd be in that clinic
regularly for the next 5 years. It was rather
daunting...
Anyway, at this point, clinic visits are fun days.
Its a chance to see friends, visit with people we
love, and go over my list of questions/needs that
I've been compiling over the previous 8 weeks.
Most kids at Avalon's stage are in and out pretty
quick. By now, the vast majority of ALL kiddos
are getting their "normal" lives back - and doing
fairly well - with only a few minor bumps like a
learning issue or two. Oh no...little miss Avalon
has to be an over-achiever. I don't think we've
ever had an appointment without some looming
test or recent discovery to discuss. If I ever trot
in and out of that clinic with a mere, "Counts are
good - she looks great," - I may faint from the
shock.
Today was pretty typical for us, I had a list of
questions. Off treatment clinic days are just
simpler versions of on-treatment days. You
check in at the front desk, and wait to be called.
The triage room PCA's will call you back for vitals
and height/weight. Because Avalon is deported,
we do her Heme -Onc bloodwork with a
fingerstick. If rheumatology or someone else
orders big tests, we go to the lab for a vein stick.
But Heme-Onc only looks at counts, so
fingersticks are more than enough. Avalon has
got to be one of the best kids on the planet with
fingersticks. She could care less. She knows
she gets to pick her bandaid, and that she can
always talk them out of some form of candy - so
she's 1000% on board with them stabbing her.
BTW, in case you care, Avalon's favorite
bandaids are silver holographic ones. Dr.
Ranalli showed her years ago, that if you have
one of those on, and stick your finger in a
sunbeam - you can make rainbows on the walls.
She's been a fan ever since.
After the vitals room, you go back out to the
general waiting area. When Avalon had a port,
the next step would be to be called back to the
infusion room for a port access. No port - and
we removed that step. So our next stop is for
her physical exam. Usually, physicals are done
by the nurse practitioner. If she finds a problem,
she will call in the doctor to look too, or to answer
questions a parent may have.
Its interesting, some people consider it a
negative thing that our kids are seen by NP's
rather than attendings. Funny enough - at our
clinic, the attendings seem to almost "serve" the
NP's! Attendings will step in and do a procedure
if the NP is swamped, or do a physical exam if
she's too busy doing procedures. And from
years of experience, I can definitely tell you, if
our NP, Diane, had a dollar for every time I've
heard an attending defer a decision or
judgement to her...she'd be on a Cruise to the
Greek Isle! Avalon had a temperature one time,
and Diane asked the attending for his opinion
about admitting her. He happened to disagree -
thinking she was OK to go home and be
watched. Diane kept pestering him, pointing out
how she was acting, what I had reported. She
eventually came back to the room and grinned,
saying that after a while, the doctor had
acquiesced saying, "You really don't care what
my opinion is, do you? You just wanted me to
sign the paper." Yep! And for the record, Diane
was right. Avalon was in for several days, on IV
fluids - and really sick. And yes, we both teased
the attending about it. (I happen to really like
that doctor too)
I also disagree with the parents who gripe that
they don't see the doctors often enough. I've
often wanted to grab them and shake them back
to their senses! At our clinic, the doctors see the
kids with problems, not the ones that are doing
well. I'd be damn happy to not be on a first name
basis with the whole stinkin' attending staff!
Every time someone complains about "only
seeing the nurse practitioners" - I think how
much they'd change their tunes if they were in
our shoes...
I shared all of this, because today was one of
those wonky days. I fully planned on having to
hunt Dr. Ranalli down after seeing Diane, only to
find out she was too busy to see us - so Dr.
Ranalli would be doing the exam. Woo hoo -
another step lobbed off the day. Although - they
did manage to throw me a curve ball. As we sat,
waiting patiently in our exam room, in walk two
"sixteen year olds". OK, so they weren't really 16
- they were just verrrry young looking. Turns
out, they were med students. (looking younger
to me by the day...) Poor girls. I mean,
seriously, Avalon is about the worst ALL kid to try
to get a history on. Heck, her own pediatrician
has asked me to explain acronyms I toss around,
because she's never heard of them. Med
students?! You've got to be kidding me....
up today. I don't know if I've explained this or not
- but leukemia kids are followed really closely -
for a ridiculously long time. Such is the life of a
cancer kid - whose cancer is part of a bodily
function, not just an extra tumor. Because our
kids' cancer is part of their immune response -
they are watched closely, for years.
ALL girls under go chemo for roughly 2 1/2
years. ALL boys - have an entire extra year on
top of that. Once you are off treatment (done
with chemo) - we all go back to the clinic for
follow-up check-ups. The schedule is: once a
month for the first year, once every two months
for the second year, once every three months for
the third year - and I'm not quite sure about after
that. I think every 6 months the 4th year, then
only yearly...but I'm not positive. Kind of crazy to
think about isn't it? Here she was, 17 months old
at diagnosis...and we knew we'd be in that clinic
regularly for the next 5 years. It was rather
daunting...
Anyway, at this point, clinic visits are fun days.
Its a chance to see friends, visit with people we
love, and go over my list of questions/needs that
I've been compiling over the previous 8 weeks.
Most kids at Avalon's stage are in and out pretty
quick. By now, the vast majority of ALL kiddos
are getting their "normal" lives back - and doing
fairly well - with only a few minor bumps like a
learning issue or two. Oh no...little miss Avalon
has to be an over-achiever. I don't think we've
ever had an appointment without some looming
test or recent discovery to discuss. If I ever trot
in and out of that clinic with a mere, "Counts are
good - she looks great," - I may faint from the
shock.
Today was pretty typical for us, I had a list of
questions. Off treatment clinic days are just
simpler versions of on-treatment days. You
check in at the front desk, and wait to be called.
The triage room PCA's will call you back for vitals
and height/weight. Because Avalon is deported,
we do her Heme -Onc bloodwork with a
fingerstick. If rheumatology or someone else
orders big tests, we go to the lab for a vein stick.
But Heme-Onc only looks at counts, so
fingersticks are more than enough. Avalon has
got to be one of the best kids on the planet with
fingersticks. She could care less. She knows
she gets to pick her bandaid, and that she can
always talk them out of some form of candy - so
she's 1000% on board with them stabbing her.
BTW, in case you care, Avalon's favorite
bandaids are silver holographic ones. Dr.
Ranalli showed her years ago, that if you have
one of those on, and stick your finger in a
sunbeam - you can make rainbows on the walls.
She's been a fan ever since.
After the vitals room, you go back out to the
general waiting area. When Avalon had a port,
the next step would be to be called back to the
infusion room for a port access. No port - and
we removed that step. So our next stop is for
her physical exam. Usually, physicals are done
by the nurse practitioner. If she finds a problem,
she will call in the doctor to look too, or to answer
questions a parent may have.
Its interesting, some people consider it a
negative thing that our kids are seen by NP's
rather than attendings. Funny enough - at our
clinic, the attendings seem to almost "serve" the
NP's! Attendings will step in and do a procedure
if the NP is swamped, or do a physical exam if
she's too busy doing procedures. And from
years of experience, I can definitely tell you, if
our NP, Diane, had a dollar for every time I've
heard an attending defer a decision or
judgement to her...she'd be on a Cruise to the
Greek Isle! Avalon had a temperature one time,
and Diane asked the attending for his opinion
about admitting her. He happened to disagree -
thinking she was OK to go home and be
watched. Diane kept pestering him, pointing out
how she was acting, what I had reported. She
eventually came back to the room and grinned,
saying that after a while, the doctor had
acquiesced saying, "You really don't care what
my opinion is, do you? You just wanted me to
sign the paper." Yep! And for the record, Diane
was right. Avalon was in for several days, on IV
fluids - and really sick. And yes, we both teased
the attending about it. (I happen to really like
that doctor too)
I also disagree with the parents who gripe that
they don't see the doctors often enough. I've
often wanted to grab them and shake them back
to their senses! At our clinic, the doctors see the
kids with problems, not the ones that are doing
well. I'd be damn happy to not be on a first name
basis with the whole stinkin' attending staff!
Every time someone complains about "only
seeing the nurse practitioners" - I think how
much they'd change their tunes if they were in
our shoes...
I shared all of this, because today was one of
those wonky days. I fully planned on having to
hunt Dr. Ranalli down after seeing Diane, only to
find out she was too busy to see us - so Dr.
Ranalli would be doing the exam. Woo hoo -
another step lobbed off the day. Although - they
did manage to throw me a curve ball. As we sat,
waiting patiently in our exam room, in walk two
"sixteen year olds". OK, so they weren't really 16
- they were just verrrry young looking. Turns
out, they were med students. (looking younger
to me by the day...) Poor girls. I mean,
seriously, Avalon is about the worst ALL kid to try
to get a history on. Heck, her own pediatrician
has asked me to explain acronyms I toss around,
because she's never heard of them. Med
students?! You've got to be kidding me....
| Our beloved Liz - PCA from Children's - that we've adopted as family - she's stuck with us! |
| Cutie Patootie Ryan - another Heme-Onc PCA. Avalon had the hugest crush on him! We've adopted him too. We do that. ;-) |
| Diane, Avalon's oncology Nurse Practitioner. This wonderful, AMAZING woman is 100% responsible for me staying sane these past few years. She has been unwaveringly supportive, totally honest, and the best advocate any parent could hope for. There aren't enough positive adjectives in the dictionary for her! She was busy today - but we had to hunt her down for a hug. |
| Dr. Ranalli, Avalon's much, much, much LOVED oncologist. Look at that grin! He not only saved Avalon's life - he's truly one of the "good guys". He's as sweet and funny as he is brilliant. I will never be able to thank him 1/2 as much as I owe him... |
I've gotten pretty good at the summarizing game, so I asked the girls if they had heard
anything about Avalon. They had done some reading, and been briefed a bit - so they were
able to ask some good questions. I gave them my "Avalon bio" and then we went from there. I
love getting my hands on med students/residents/fellows - because I think I have valuable info
to share. We've been the very blessed recipients of some excellent care, and some
not-so-stellar interactions - and I like explaining the differences between the two to aspiring
doctors. I think they need to hear how patient families receive things, and how much we
appreciate certain things. When Dr. Ranalli told me at diagnosis, that I had to let go of my
maternal guilt, I did nothing to cause her cancer, and I could NOT have prevented it...he gave
me a lifetime gift. I've passed that story on to every doctor who will listen. I hope future
parents can benefit from his wisdom.
After filling the med students' ears to the brim, they headed out to hook up with Dr. Ranalli.
Eventually, they all traipsed back in. After the usual greetings, Dr. Ranalli started our day with,
"What? You're sick? I thought cancer moms didn't get sick!" Of course he was grinning like
an ornery Cheshire cat as he said it. Glad to know least someone was recognizing I felt awful.
My family was entirely over my whining.
Dr. Ranalli and I were able to discuss what's been going on with Avalon over the last few
months, and also my interest in pursuing educating/researching about ALL kids and
intracranial hypertension. As far as the ICH thing, I do think we will eventually work together to
bring about not only awareness, but hopefully, to start some research, to investigate the
connection further. He and I are both pretty stubborn, and committed.
As far as Avalon, some good, some just OK. Her counts look great. From a cancer
perspective, she is doing FANTASTIC. I asked about checking her bone density again,
because our 1 year window is long past. Apparently, the Nephrology Clinic should have
followed up with me and scheduled the 1 year scan, so Dr. Ranalli said he'd nudge them into
gear.
Next we described Avalon's behaviors and physical issues. I brought Dr. Ranalli up to speed
on what Dr. Batley in Physical Medicine had found, and on the latest news from neuro-surgery.
We discussed what was coming up over the next month. Finally, I had to beg for help with
learning to live with her. I described her "new" (since May) autistic-like behaviors, and how
difficult we are finding it to live with them. I need help. I need someone to teach me coping
skills for myself, and on the best way to help her. Oh, poor Mark, he made a bit of a faux paux
here. He made the mistake of saying that perhaps what was going on was an "ages and
stages" type of behavior. That she was maybe just doing normal rotten 5 yo stuff. This is
where Momma Bear, is darn glad she has such a good relationship with Dr. Man. I promptly
told him he was full of crap. I reminded him that he'd played that game with me a couple of
times, and that he'd always been 100% wrong. I reminded him (not so gently) that A) I wasn't
new at this mother-thing, and B) by now I would think he would have learned to trust my
instincts. I then told him he either referred me for psychological help for her - or he'd better
write me a prescription for Valium. One way or the other, I'd reached the end of my coping
skills - and I needed help. He laughed, apologized for daring to argue - and promised the
referral. Good, Mr. Doctor-Man. Thank you kindly for listening.
Seriously, though. Its a gift to know you can openly disagree with your doctor. Of course I've
never been rude or arrogant. That's pointless. I have just learned to stand my ground. In this
case, it certainly was a reasonable thing for him to suggest what he did. However, it was
utterly WRONG. I am grateful that we have the relationship that I can remind him that he
missed things by not trusting me in the past. I'm more-than-grateful that he not only
remembered that, but that he lovingly smiled at me, admitted defeat, and promised help. BTW,
all of this took place in front of the med students. Yes, folks, I called out our attending in front
of the "kiddos". I did so with respect, kindness, and humor - and it was answered in kind. I
hope both future healers learned something. Doctors are not infallible, mothers should be
listened to, and humor and respect go a long way toward fostering good patient/physician
interaction.
As you can see from the pictures, we LOVE our Heme-Onc family. I've said it a 100 times
before, and I'll continue to say it forever - they not only saved my daughter, they saved my
heart. They have become enormous parts of our lives, and we will never be able to thank
them enough. As I've met more and more people across the world who are also fighting
pediatric cancer, I'm always amazed at how blessed we are to have the team we do. They care
as much about the families, as they do about curing the disease. They see their little charges
as their own, and fight as vigorously, and lovingly, as if each of these children were theirs. As
awful as it is to admit, I know in my heart we would have long ago lost Avalon, if we were
anywhere else. I am forever in their debt.
Today was no exception. Dr. Ranalli and I had a detailed, productive dialogue. We discussed
helping other kids, and we discussed Avalon. Dr. Ranalli put aside his own thoughts, to really
listen to mine, and try to help. Does it fix whatever damage Voldemort did to her? NO. But....it
goes a long way toward helping me cope with whatever the future brings. NO MATTER
WHAT...I know our oncology team will help us get through it. We are truly Blessed to be
exactly where we are.
And best of all...after holding our breaths....we're going on vacation! Wahoooooo!!!! This is
our third attempt to join our friends on a Williamsburg vacation. Way back in Oct of 2005, a
case of suspected Varicella (chicken pox) landed Avalon in the hospital - and cancelled our
Williamsburg vacation. Then, in Oct 2006, we welcomed Anam to the family, and plans were
dashed again. Having this appointment so close to vacation - caused me serious heart
attacks. I can't tell you all the wild things I imagined I'd hear! So glad, it was nothing more than
my over-active stress hormones at work...
Oh - and if you ever doubted how "in tune" our Heme-Onc staff was - how's this? When Dr.
Ranalli said her labs were perfect, I sighed, and said, "Great! Now we can go on vacation!"
He asked where, and I said to Williamsburg. He asked if it was with the same friends they'd
made us cancel with many years ago.... Oh yeah...he pays attention.
Yep - we're darn lucky.........