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Our
Journey:
Journey:
Avalon's Army of Angels
| June 22, 2009 Reach the Day - Day 1 |
Here it is at last...Reach the Day! For two years now
we've wanted to go, even planned to go last year...but
brain surgeries and disaster got in the way.
Hmmm...this is soooo big, I'm slightly stymied as to
how to start explaining it all. As with the song, "Let's
start at the very beginning, a very good place to
start..." So first, some background.
This is their website
CureSearch is the fundraising/awareness arm of the
Children's Oncology Group. Their own website
describes CureSearch like this:
CureSearch unites the world's largest childhood
cancer research organization, the Children's
Oncology Group, and the National Childhood Cancer
Foundation through our mission to cure childhood
cancer. Research is the key to the cure.
For the past nine years, CureSearch has organized a
two day awareness event in Washington DC to further
political awareness and support for pediatric cancer.
This event is called "Reach the Day". Participants in
Reach the Day (RTD) come from all over the United
States, paying their own way, for a chance to be
heard by their congressional representatives and
senators. RTD participants are family members,
friends, medical professionals, and concerned
charities who choose to work together to try to further
public knowledge and support of childhood cancer.
Here is the link to the Reach the Day section of the
CureSearch site:
If you click on the link, you'll notice there are several
sections about RTD, including a "Photo" section. If
you will take the time to click on the "Photo" link
below...you'll see my kids as part of the slide show.
Ambrosia's sign is the one that says, "Find the Cure"
and Avalon is the grinning cutie in the wheelchair.
Why is this event, this group so important to us? Its
simple...they gave us back our daughter.
Childhood cancer is entirely different than adult
cancer. In the pediatric cancer world, the doctors and
scientists have banded together to try to improve our
children's survival rates. Hospitals work
collaboratively, to be able to have enough children
enrolled in a study, to show statistical progress with
new or altered treatments. Historically, pediatric
cancer has always been at the bottom of the funding
barrel. The doctors and researchers have had very
little to work with to try to save as many children as
they can.
There is something worth noting here. The way
C.O.G. hospitals work together is nothing short of
amazing. There are thousands of doctors who work
as a team, sharing information and consulting at a
national level. Adult cancers don't work anything like
this. There are so many adult patients, that often -
there can be several research projects going within
one hospital. Dr. A might be researching blah about
breast cancer, while Dr. B is researching bleck. Each
doctor may prescribe entirely different treatment
regimens. Within our C.O.G. network, there is
continuity of care. I email with people from around the
world, whose children have received the exact same
drugs, in the same doses my daughter did. Its a
miracle of modern communication and cooperation.
If you support CureSearch - you're helping the
hundreds of hospitals that have chosen to work
collaboratively. (CureSearch is NOT St. Jude - St.
Jude does not financially support CureSearch or the
COG in any way)
Reach the Day is an event that brings people
together in a concentrated two day effort to push
Childhood Cancer Awareness to the forefront of our
lawmakers minds. We go to beg them to "hear" us -
and use their power to save the children of those
heartbroken parents who will come behind us.
Last year, the focus of Reach the Day was asking for
support of the Caroline Pryce-Walker Conquer
Childhood Cancer Act. The CCCA allocates 30
million dollars a year, for 5 years, to be used for
pediatric cancer research. Below is the link to the full
description of the Act and its eventual passage in
2008.
This year, one of our main focuses was to ask our
representatives to appropriate the money for the Act.
In other words...sign the check.
we've wanted to go, even planned to go last year...but
brain surgeries and disaster got in the way.
Hmmm...this is soooo big, I'm slightly stymied as to
how to start explaining it all. As with the song, "Let's
start at the very beginning, a very good place to
start..." So first, some background.
This is their website
CureSearch is the fundraising/awareness arm of the
Children's Oncology Group. Their own website
describes CureSearch like this:
CureSearch unites the world's largest childhood
cancer research organization, the Children's
Oncology Group, and the National Childhood Cancer
Foundation through our mission to cure childhood
cancer. Research is the key to the cure.
For the past nine years, CureSearch has organized a
two day awareness event in Washington DC to further
political awareness and support for pediatric cancer.
This event is called "Reach the Day". Participants in
Reach the Day (RTD) come from all over the United
States, paying their own way, for a chance to be
heard by their congressional representatives and
senators. RTD participants are family members,
friends, medical professionals, and concerned
charities who choose to work together to try to further
public knowledge and support of childhood cancer.
Here is the link to the Reach the Day section of the
CureSearch site:
If you click on the link, you'll notice there are several
sections about RTD, including a "Photo" section. If
you will take the time to click on the "Photo" link
below...you'll see my kids as part of the slide show.
Ambrosia's sign is the one that says, "Find the Cure"
and Avalon is the grinning cutie in the wheelchair.
Why is this event, this group so important to us? Its
simple...they gave us back our daughter.
Childhood cancer is entirely different than adult
cancer. In the pediatric cancer world, the doctors and
scientists have banded together to try to improve our
children's survival rates. Hospitals work
collaboratively, to be able to have enough children
enrolled in a study, to show statistical progress with
new or altered treatments. Historically, pediatric
cancer has always been at the bottom of the funding
barrel. The doctors and researchers have had very
little to work with to try to save as many children as
they can.
There is something worth noting here. The way
C.O.G. hospitals work together is nothing short of
amazing. There are thousands of doctors who work
as a team, sharing information and consulting at a
national level. Adult cancers don't work anything like
this. There are so many adult patients, that often -
there can be several research projects going within
one hospital. Dr. A might be researching blah about
breast cancer, while Dr. B is researching bleck. Each
doctor may prescribe entirely different treatment
regimens. Within our C.O.G. network, there is
continuity of care. I email with people from around the
world, whose children have received the exact same
drugs, in the same doses my daughter did. Its a
miracle of modern communication and cooperation.
If you support CureSearch - you're helping the
hundreds of hospitals that have chosen to work
collaboratively. (CureSearch is NOT St. Jude - St.
Jude does not financially support CureSearch or the
COG in any way)
Reach the Day is an event that brings people
together in a concentrated two day effort to push
Childhood Cancer Awareness to the forefront of our
lawmakers minds. We go to beg them to "hear" us -
and use their power to save the children of those
heartbroken parents who will come behind us.
Last year, the focus of Reach the Day was asking for
support of the Caroline Pryce-Walker Conquer
Childhood Cancer Act. The CCCA allocates 30
million dollars a year, for 5 years, to be used for
pediatric cancer research. Below is the link to the full
description of the Act and its eventual passage in
2008.
This year, one of our main focuses was to ask our
representatives to appropriate the money for the Act.
In other words...sign the check.
I think the best way to explain everything is to go
back to the beginning of the day - and describe what
we did, what I heard, and in general, what it was like
to be there. At the bottom of this page, I will have
links to other pages in my site. I have scanned in
the exact paperwork we were given at Reach the
Day. I cannot hope to do as thorough a job
explaining everything as CureSearch's staff has. I
surrender to them, their education, and their
understanding of the convoluted political process.
Please don't merely take me at my simple words -
check out the links on this page - knowledge is
power, and Power can help another mother hold
tight to her daughter.
Our day started at Anne's house, much less frantic
than Sunday morning had been. My first meeting at
the Reach the Day activities didn't even start until 1
pm, so we didn't have to rush around like
cracked-out-honeybees. We all took restful showers
and had a leisurely breakfast.
As with Sunday, Anam proved that 2 year olds can
be absolute terrors. No matter what we did, he was
a cranky rat. Before Anne left for work, she offered
to have me call her if I needed to be "rescued" from
a kid or two, so I could complete my advocacy
training. It seemed like such a good idea, that
Aurora decided staying at Anne's house with Anam,
and awaiting "back-up" when Anne got off work, was
far preferable to fighting with Sir Cranks-A-Lot in a
hotel ballroom. Fair enough. So my brood was
down to two as we aimed toward DC.
After our parking disaster of Sunday, I knew that I
was headed for trouble. I called ahead to the host
hotel, to ask if I could pay to park there, since I was a
member of the conference. At a bargain price of
$16, it seemed like it was going to be an easy day,
with door to door service. "Seemed like" - are two
famous last words...
As it turns out, the parking lot for the hotel is
underground. Better yet, the garage had a height
clearance of less than 6 feet! I have a HIGH TOP
conversion van. Of course, the lovely hotel clerk
didn't see fit to mention that the garage is actually
only capable of holding clown cars. I discovered this
lovely little tidbit as I attempted to turn into it. Nifty.
After some frantic driving around, I eventually
decided that Union Station and their $20 parking was
my best option. Of course, it never occurred to me
that I would need cash to park - so the whole thing
took far more time than I had...since the attendant,
girls, and I had to walk back to a secret-ninja office
so they could run my credit card. Lesson # 312
learned about Washington DC - carry cash for
parking, but not too much in case you're mugged.
Check, check.
Truthfully, the parking people couldn't have been
nicer. I was, again, a basket of stress, but it certainly
didn't have anything to do with them. They were
lovely.
After the side trip to the parking office, it was time to
fetch Avalon's wheelchair and start hoofing it toward
the hotel. Hmmm...here's where the day got
interesting. Being as we were parked in the bus lot -
we were two stories above street level. As we stood
there looking like complete dorks - we tried to figure
out how to get out of the building. None of us were
fans of going down the garage ramp - those taxi
drivers are nuts. We finally saw a bus off-loading,
and followed the crumb trail to where the passengers
were headed. Sure enough, follow the people, find
the escalators..and eventually the elevators. Now
here's the thing, one elevator said "Shops and
Street level" the other one said "3-8" - or however
many parking levels there were. That didn't seem
too hard, we wanted the street - so we chose
elevator #1.
We stepped into the elevator to find only two
buttons, "Mezzanine" and "Ground Level". Well,
duh...its not hard to figure out we needed "Ground".
So, we pushed the button, the doors closed...and
then.......NOTHING. I do mean NOTHING. We
realized we weren't moving at all. We began trying
to open the doors...nothing. We tried pushing the
buttons again....nothing. We all began going to that
awful, terrible,
we-know-we're-trapped-panic-place...when the doors
finally opened. We couldn't have gotten out of there
faster if you paid us.
We then went to a sales counter that was across the
platform, figuring that if they sold tours, they'd know
how people actually get to the street. The lady
instructed us to get back on the very elevator we'd
just narrowly escaped from. What?! Turns out, that
if you push the "Ground" button on said elevator - it
sometimes shorts it out. REALLY?! So we actually
had been trapped - we were set free by the next set
of victims pushing the exterior button. And here she
was telling us we had to get right back on it, or learn
to fly. Great.
The nice, but should-put-up-a-sign lady gave us a
new gameplan. We were to ONLY push the
Mezzanine button, then get out, walk across the
building to the front elevator, and take it to street
level. OK - sounds easy enough. I'm here to
report...it WASN'T. I'm horribly, terribly
CLAUSTROPHOBIC. Under the best of
circumstances, elevators cause me chest pain and I
have to play serious mind games to not
hyperventilate in them. Add to my insanity, one of
Avalon's post-surgery neurosis is about elevators.
She's TERRIFIED of being trapped in them. So here
we go, two cracker-crazy elevator-phobes...walking
back into an elevator we had truly just been trapped
in. Uh huh...you could say it was a tad stressful.
back to the beginning of the day - and describe what
we did, what I heard, and in general, what it was like
to be there. At the bottom of this page, I will have
links to other pages in my site. I have scanned in
the exact paperwork we were given at Reach the
Day. I cannot hope to do as thorough a job
explaining everything as CureSearch's staff has. I
surrender to them, their education, and their
understanding of the convoluted political process.
Please don't merely take me at my simple words -
check out the links on this page - knowledge is
power, and Power can help another mother hold
tight to her daughter.
Our day started at Anne's house, much less frantic
than Sunday morning had been. My first meeting at
the Reach the Day activities didn't even start until 1
pm, so we didn't have to rush around like
cracked-out-honeybees. We all took restful showers
and had a leisurely breakfast.
As with Sunday, Anam proved that 2 year olds can
be absolute terrors. No matter what we did, he was
a cranky rat. Before Anne left for work, she offered
to have me call her if I needed to be "rescued" from
a kid or two, so I could complete my advocacy
training. It seemed like such a good idea, that
Aurora decided staying at Anne's house with Anam,
and awaiting "back-up" when Anne got off work, was
far preferable to fighting with Sir Cranks-A-Lot in a
hotel ballroom. Fair enough. So my brood was
down to two as we aimed toward DC.
After our parking disaster of Sunday, I knew that I
was headed for trouble. I called ahead to the host
hotel, to ask if I could pay to park there, since I was a
member of the conference. At a bargain price of
$16, it seemed like it was going to be an easy day,
with door to door service. "Seemed like" - are two
famous last words...
As it turns out, the parking lot for the hotel is
underground. Better yet, the garage had a height
clearance of less than 6 feet! I have a HIGH TOP
conversion van. Of course, the lovely hotel clerk
didn't see fit to mention that the garage is actually
only capable of holding clown cars. I discovered this
lovely little tidbit as I attempted to turn into it. Nifty.
After some frantic driving around, I eventually
decided that Union Station and their $20 parking was
my best option. Of course, it never occurred to me
that I would need cash to park - so the whole thing
took far more time than I had...since the attendant,
girls, and I had to walk back to a secret-ninja office
so they could run my credit card. Lesson # 312
learned about Washington DC - carry cash for
parking, but not too much in case you're mugged.
Check, check.
Truthfully, the parking people couldn't have been
nicer. I was, again, a basket of stress, but it certainly
didn't have anything to do with them. They were
lovely.
After the side trip to the parking office, it was time to
fetch Avalon's wheelchair and start hoofing it toward
the hotel. Hmmm...here's where the day got
interesting. Being as we were parked in the bus lot -
we were two stories above street level. As we stood
there looking like complete dorks - we tried to figure
out how to get out of the building. None of us were
fans of going down the garage ramp - those taxi
drivers are nuts. We finally saw a bus off-loading,
and followed the crumb trail to where the passengers
were headed. Sure enough, follow the people, find
the escalators..and eventually the elevators. Now
here's the thing, one elevator said "Shops and
Street level" the other one said "3-8" - or however
many parking levels there were. That didn't seem
too hard, we wanted the street - so we chose
elevator #1.
We stepped into the elevator to find only two
buttons, "Mezzanine" and "Ground Level". Well,
duh...its not hard to figure out we needed "Ground".
So, we pushed the button, the doors closed...and
then.......NOTHING. I do mean NOTHING. We
realized we weren't moving at all. We began trying
to open the doors...nothing. We tried pushing the
buttons again....nothing. We all began going to that
awful, terrible,
we-know-we're-trapped-panic-place...when the doors
finally opened. We couldn't have gotten out of there
faster if you paid us.
We then went to a sales counter that was across the
platform, figuring that if they sold tours, they'd know
how people actually get to the street. The lady
instructed us to get back on the very elevator we'd
just narrowly escaped from. What?! Turns out, that
if you push the "Ground" button on said elevator - it
sometimes shorts it out. REALLY?! So we actually
had been trapped - we were set free by the next set
of victims pushing the exterior button. And here she
was telling us we had to get right back on it, or learn
to fly. Great.
The nice, but should-put-up-a-sign lady gave us a
new gameplan. We were to ONLY push the
Mezzanine button, then get out, walk across the
building to the front elevator, and take it to street
level. OK - sounds easy enough. I'm here to
report...it WASN'T. I'm horribly, terribly
CLAUSTROPHOBIC. Under the best of
circumstances, elevators cause me chest pain and I
have to play serious mind games to not
hyperventilate in them. Add to my insanity, one of
Avalon's post-surgery neurosis is about elevators.
She's TERRIFIED of being trapped in them. So here
we go, two cracker-crazy elevator-phobes...walking
back into an elevator we had truly just been trapped
in. Uh huh...you could say it was a tad stressful.
We made our way from wacky-elevator, across the floor, and through the glass doors to the
"new" elevator. This one made the wacky-one look good. I thought I was going to require a
firing squad to force myself in it, but the thought of missing my training did it, I wasn't here for
fun, I was here for my kids. Enough whining - in we went. Oh, the joy of elevators. This one
was terminally, ridiculously, panic-attack-inducing SLOW. When we got to the bottom, it took
several seconds (as in 30 or more) for the doors to open. That may not seem so bad...but get
yourself trapped then "repeat" in a very short period of time. Oh, and did I mention that the
entire trip down, the elevator made a screeching, whining, scraping sound? Trust me...it was
bad.
But...we lived. The three of us did it! We all took several huge breaths and 200 or so sighs of
relief. We even made jokes about it. Laughter really can cure nearly anything. It also didn't
take long for the magic of Union Station to hit. The place is fascinating. We were in such a
hurry at that point, we didn't have any time to gawk - but it was at least enough to snap us out
of our 'bad place'.
Next we had to get out the good old maps and try to navigate our way to the hotel. We made
several mistakes just exiting the front of Union Station, and were already thoroughly frustrated
by the time we made it to the actual street. (versus the weird grass/driveways/thing we trapped
ourselves in) As we stood near a bus stop, I must have looked a bit harried. A lovely man
asked us if he could help us find something. When I told him what street I needed, he very
kindly showed me the easy way to get there - that it was just a few blocks down. That
wonderful man answered one simple question, and fully renewed my faith in my fellow man.
One quick moment of kindness reset my mental clock. He so surprised me, it was a true gift.
You hear such awful things about DC, it was such a blessing to experience the exact opposite.
We followed our benefactor's directions, and soon found ourselves right next door to the host
hotel. All told, Union Station was less than 3 blocks from the hotel. In DC, that's slightly
miraculous. Better yet, the walk was pretty and clean. An all-around lovely "re-start" to the day.
Because of the parking snafus, we arrived at the hotel about 5 minutes after my first session
had begun. I quickly took Ambrosia and Avalon to the kid's room, and signed them in. Then
CureSearch registration workers were kind enough to let me go straight into my meeting, with
my promises that I would fill out my paperwork between sessions. So in I went to the
ballroom...in a hurry, and not knowing what to expect. What I found was this:
"new" elevator. This one made the wacky-one look good. I thought I was going to require a
firing squad to force myself in it, but the thought of missing my training did it, I wasn't here for
fun, I was here for my kids. Enough whining - in we went. Oh, the joy of elevators. This one
was terminally, ridiculously, panic-attack-inducing SLOW. When we got to the bottom, it took
several seconds (as in 30 or more) for the doors to open. That may not seem so bad...but get
yourself trapped then "repeat" in a very short period of time. Oh, and did I mention that the
entire trip down, the elevator made a screeching, whining, scraping sound? Trust me...it was
bad.
But...we lived. The three of us did it! We all took several huge breaths and 200 or so sighs of
relief. We even made jokes about it. Laughter really can cure nearly anything. It also didn't
take long for the magic of Union Station to hit. The place is fascinating. We were in such a
hurry at that point, we didn't have any time to gawk - but it was at least enough to snap us out
of our 'bad place'.
Next we had to get out the good old maps and try to navigate our way to the hotel. We made
several mistakes just exiting the front of Union Station, and were already thoroughly frustrated
by the time we made it to the actual street. (versus the weird grass/driveways/thing we trapped
ourselves in) As we stood near a bus stop, I must have looked a bit harried. A lovely man
asked us if he could help us find something. When I told him what street I needed, he very
kindly showed me the easy way to get there - that it was just a few blocks down. That
wonderful man answered one simple question, and fully renewed my faith in my fellow man.
One quick moment of kindness reset my mental clock. He so surprised me, it was a true gift.
You hear such awful things about DC, it was such a blessing to experience the exact opposite.
We followed our benefactor's directions, and soon found ourselves right next door to the host
hotel. All told, Union Station was less than 3 blocks from the hotel. In DC, that's slightly
miraculous. Better yet, the walk was pretty and clean. An all-around lovely "re-start" to the day.
Because of the parking snafus, we arrived at the hotel about 5 minutes after my first session
had begun. I quickly took Ambrosia and Avalon to the kid's room, and signed them in. Then
CureSearch registration workers were kind enough to let me go straight into my meeting, with
my promises that I would fill out my paperwork between sessions. So in I went to the
ballroom...in a hurry, and not knowing what to expect. What I found was this:
I had hurriedly and quietly found a seat in the back. When I finally looked up on the dais, I
think I actually gasped out loud. I certainly knew that CureSearch loves that image of Nick and
Avalon. Its on their brochures, was on the year-end report two years ago, was on Christmas
cards to Congress in 2007, and is in their awareness video. I know all of that...but I wasn't
prepared to look up and see it 6 feet tall...in front of me...my family.
It was very difficult for me to listen for a while. I was instantly taken back to my first public
speaking engagement after Avalon was diagnosed. I walked into the Circle of Friends evening
gala and burst into tears seeing Avalon's face on the posters. Living with it, and seeing it in a
more remote, impersonal form like a poster....well, its two entirely different things. I can still
"feel" those days...how terrified we were during her port infections, how awful it was every day
the nurse came to change her dressing and "pack" the open hole in her chest that the
bandage in the picture is hiding... That photo represents the fragility of all cancer families, I
love it as much as they do. But on a personal note - it represents my Hell...and it can
sometimes take me a bit to adjust to it. I know that sounds weird, heck, I have that very picture
hanging at the top of my stairs. Every time I walk up the stairs, I smile at it. The same picture
hangs in the hallway just before you enter our hospital's cancer ward. Every time I walk past it,
in or out of the unit, I kiss my hand, and touch it to their cheeks. That picture represents so
much to my heart...I could spend a lifetime trying to explain it. On this day, in this space...it
meant more than mere words could hope to convey. It was...daunting.
As soon as I gathered myself, I tried to pay as close attention as I could. The first session was
for first-time attendees at Reach the Day. I soon discovered, I probably could have skipped it.
The lecture was about being an advocate, about connecting with the congressional liaisons on
a personal level. Yes, the political mumbo jumbo is important - but not necessarily for the
families to worry about. Our job was to make cancer real for them. Our job was to touch their
hearts.
I did, however, learn a lot about "funding" during that first meeting. I learned that just because
we got the Act passed into law, doesn't necessarily mean it will ever get funded. Making it a
law makes it so Congress can legally fund it, but it certain doesn't mean they have to. Funny
how that kind of thing isn't covered in high school government class. We also learned that we
would most likely be meeting with congressional liaisons rather than the actual senators or
representatives. Liaisons are paid staffers, each of whom specializes in a certain area of
government. There is so much to know, so much to learn - its far too much for each
Congressperson to fully comprehend. The staffers specialize in foreign affairs, homeland
security, health issues, etc. They take in the information, then make informed
recommendations to their bosses. Basically, we learned we should be happy we were
scheduled with the liaisons, its in our best interest.
Overall, the first meeting was about teaching people to do what I've been doing for the past 4
years, help outsiders understand why our kids matter, and what its like to live our lives. I knew
what Kate was saying, but its a hard concept to fully explain. People need to almost walk in
our shoes...before they fully get it. What a lot of us share, is too easy for people to "ignore".
Sometimes, finding that common thread - is as delicate as threading a needle - you have to
pay close attention. What speaks to one audience, may turn off another. I think lobbying is
like successful public speaking - "feel" your audience, and mold to them - rather than a
one-size-fits-all approach. Which, by the way, is waaayyy easier in theory than in practice.
After the first session, I introduced myself to Kate from CureSearch. It was great to finally have
a face to go with the name and voice. I also ended up meeting Sally, another lovely lady I've
had several chats with. I hope to have several more talks with both of them...cross your
fingers.
I soon went to fetch my little ones, so we could spend a little time together before the next
session. As it turns out, Sally asked the three of us if we would do a video-taped interview for
CureSearch. Of course we agreed, we were there to help, any way we could.
Wow...that interview ended up being much more difficult than I thought. Every family was
asked the same list of questions. The hope is to combine the interviews, choosing several
answers to each question - trying to help people see things from our points of view. I freely
admit that I often cry when I speak publicly. Oddly enough, I can talk about Avalon's
procedures, diagnoses, etc with very few problems. The tears generally come, when I try to
talk about the extreme kindnesses that have been done for Avalon, or our family. Avalon
turned two in the hospital. I can NEVER talk about that night without crying. (tears are running
as I type this) From the ER transfer staff that sang loudly to her as they took her up to a room
on the unit, to her fellow, who quietly knelt by her bed in the dark of night to sing "Happy
Birthday" to her...they are memories that are so precious...I hope I never quit crying.
At Reach the Day, I never imagined I'd lose my resolve. I was so grateful to be there, to finally
be able to give back, it never occurred to me how one little question would affect me. The
video crew and I had been chatting and laughing. The girls were being friendly, and the
people were very nice. Once the interview started, they asked a simple question, "Why is this
important to you?" I lost it.
How can I answer that? Why is this important? Because I still have my baby! Because other
mothers I know don't. Because in our country we just spent billions of dollars on the swine flu,
when less than 500 people worldwide have died from it...and yet more than 3000 mothers will
have empty arms this year alone...because of Childhood Cancer. Why is this important?
Because our children DIE and are maimed...and no one seems to notice. If you add together
the yearly deaths from all other childhood illnesses...they barely equal deaths from pediatric
cancer. Why the Hades isn't that front page news?! Why did I have to nearly lose my
daughter before I knew about it? Its important because our kids matter....they need a voice.
They deserve a chance at life. They need to be heard....
Yep, I was a wreck. It was hard on my girls too. Thankfully, they gave us a few minutes to
recover, and I think I did better with the rest of it. I walked out of there shocked at myself. I
guess I didn't know how heavy this all rests on my soul. I'm sorry I cried, but I'm also not. I
can't hide the pain, I live with it. I guess I need to learn to be OK with sharing it.
After our video moments, it was time for the girls to head back to Camp CureSearch. From
what I understand, the "Camp" idea was new this year. They were trying to help the parents
who choose to bring their children - have a distraction that will allow the parents to pay closer
attention. I was thrilled for that. My girls met wonderful kids, and had a great time making
posters and cancer kid crafts. The poster Ambrosia is holding in the video I linked to - is the
one she made during "Camp".
The evening session was for everyone attending Reach the Day. During the session, Kate
carefully outlined the history of funding for pediatric cancer research, and where our money
has historically come from. She explained the details of what we "want" from Congress, but
assured us that we needn't focus on them, just work to make our stories real for the liaisons.
The Congresspeople and their staff understand the ins and outs of what we're asking already
- our job was to pull at their heartstrings and actually convince them to do it.
The second part of the evening session was a speech by Dr. Reaman, the head of the COG.
He was there to report on recent news on the research front, and to address why the $30
million dollars the CCCA promises can make such a huge difference. Dr. Reaman is a brilliant
and dedicated researcher - but he might benefit from a lesson or two in 'knowing his
audience'. The current research trends and breakthroughs are terribly exciting, but I think his
very honest, very technical presentation was over the heads of most of the attendees. In a
perfect environment, I think I could have understood nearly all of it, but interruptions, noise
from the crowd, etc - left me in a less-than-ideal state for concentrating. I'm not really sure
how to improve on the speech. The fact is, what is currently being explored is very in-depth,
and very innovative. 'Dumbing it down' wouldn't have been easy, but I think it might have
been prudent.
In essence, the biggest breakthroughs, and research directions, have to do with genetically
typing various cancers. In other words, the researchers are looking to develop more directed,
targeted approaches. By matching chemotherapies to exact genotypes of leukemias, tumors,
etc...the hope is to A) gain success with resistant cancers, and B) produce less unacceptable
side effects. Gene-specific therapies should have less collateral damage than broad spectrum
ones. Rather than figure out how to explain this all again, I'm going to plagiarize myself. Below
are two posts I wrote to my online group, ALL-Kids. Hopefully, they'll make sense.
Post 1 - in response to a thread for how "Easy" ALL treatment is:
"Anyway, I'm not ready to post everything to Avalon's site yet, but I had to share something. Monday
evening, the head of the COG (Children's OncologyGroup) spoke to the RTD crowd about current
research projects, recent breakthroughs, etc. His intent was to keep us informed, as well as to fire
us up a tad about why we needed to push for the Caroline Pryce Walker Conquer Childhood Cancer Act
to be fully funded.
Dr. Reaman (head of COG) is a brilliant and dedicated man, but not terribly skilled at gearing speeches
toward their intended audiences. Much of his presentation was far too technical for a large percentage
of the audience, but there were several very key points to take from it. First of all, the largest
"breakthroughs" are in genetic typing of leukemias and neuroblastomas. By gearing treatments
specifically toward the genotypes of the cancers, the hope is to A) gain higher cure rates for NB
(dismally low compared to ALL) and for better results with our ALL kiddos.
I'll speak to the ALL part only here. I caught the gist of what he was saying, but am definitely not 100%
proficient. Basically, the discussion was about the kiddos like some in our group, who are MMHR...? +
(I know I have those initials wrong...forgive me!) Now that we can type out and recognize the
kids who are more sensitive to certain drugs, yet more likely to experience relapse...we can do a better
job at directing treatments appropriately. Folks, when Avalon was dx nearly 5 yrs ago, we didn't have a
lot of the testing parameters (or understanding) we do now. (EX no MRD testing)
When I spoke to Dr. Reaman the next day, he said I had understood correctly. Researchers are working
to better understand the genotypes of the different leukemias, so we can PREVENT kids with permanent
toxicities like Avalon. How cool is that? I love the idea that some day we'll be able to pre-identify kiddos
like her, and adjust meds to make sure other people don't have these issues. Neat! Not to mention, the
hope that we will be better able to help the kids with 'resistant' strains.
While this email may seem odd for this thread...I'm leading up to the relevance. Dr. Reaman said
something in his speech that made my blood run cold. I repeated it the next day to each of our
Congressional representatives - and will continue to repeat it forever. As Dr. Reaman discussed the
importance of research into new drugs, he mentioned ALL. He said (and yes, this is as near of an exact
quote as I can get), "We've reached maximum toxicity with ALL chemotherapy." (from here, I'm
paraphrasing more) 'We've pushed the doses as far as we can. New advances in ALL will only be made
if we can invent new drug therapies.'
I apologize for the second half of that not being exact...but my head was swimming with the first
statement. "We've reached maximum toxicity with ALL chemotherapy"... That rattled me to the core. I
thought of the intracranial hypertension kids on this list...the AVN kids...the digestion issues...not to
mention frontline kids like Will who have been lost to VOD, something that only the toxicity of BMT
should cause. We really have maxed out our kids and their fragile little bodies. AND WE ARE
SUPPOSED TO HAVE THE "EASY" CANCER!
I have heard the toxicity phrase hundreds of times in my head the past few weeks. I'm not sure how I
feel about it. Yes, I'm GRATEFUL that we've pushed so hard with the miniscule amount of research
money we have...that our ALL kids have such great survival rates. Of course, I'm beyond blessed
that we benefitted from that work, and still have Avalon. But part of me is numb, hearing "maximum
toxicity" - its so terribly sad that its all our doctors/researchers have had at their disposal. I suppose it
may become my new battle cry.
My long winded point is this...CRAP FOOEY on the "easy cancer" bunk. Our kids are tortured,
tormented, poisoned, and defiled. We do it in the name of LOVE...but its still awful. I'm fully ready to
whack the next dung-digger that says this is "easy". I have a vice grip for their personals and army ants
for their gym shorts. After I shave their head and whomp it with a hammer, I'll ask them if they feel
"Lucky". After doing the same thing for a minimum of two years....I'll ask them again.
With stick and ant farm in hand...
Alicia - Avalon's proud mommy
*********************************************************************************************************************
This was a question - posted in response to the above information:
"Alicia, I'm a little confused by what "maximum toxicity" means... what about kids who relapse and get
blasted with 2 1/2 more years of chemo or BMT? Relapse chemo is WAY more intense than frontline
chemo - so I guess I don't understand how frontline chemo can be considered maximum toxicity."
********************************************************************************************************************
Here is part two of my posting about the medical lecture from Dr. Reamer
"I'm not sure I 100% understand either - like I said it was a comment in a sea of intense medical info. I
took it to mean that the researchers are at the end of their rope with the levels they give our frontline
kids. Kind of like with what we've seen on list with Dex and AVN. They've increased doses, increased
length of time, etc - and have achieved the best benefits they feel they can, without causing damaging
effects (like VOD, etc) Dr. Reaman seemed to be saying that they don't think they can improve general
numbers with the chemos we have now - that we've pushed them as far as we can. The "hope" lies in
understanding more about specific genotypes of leukemias and in somehow, someday, having enough
research money to invent entirely new drugs. The new amazing developments are all in gene-centered
therapies.
With gene-centered therapy, drugs will hopefully eventually be kind of 'designer' - made for specific
types of leukemia, tumors, etc...rather than the one-size-fits-all approach we have now. For example, in
the future, Child A's leukemia would be exactly 'typed' - showing that she needed "X" to make sure it
was completely eradicated on frontline. Avalon's leukemia would be 'identified' as 'blah-blah' type,
showing sensitivity to certain drugs and a proclivity to late effects. Does that make any sense?
I asked Dr. Reaman if they were eventually going to study kids with late effects like Avalon, or relapsers
- to kind of 'fill out' the research data. My thought was, Avalon has A, B, C problems...so she
supports that 'kids of genotype blah blah' will likely have those issues. That's when Dr. Reaman
corrected me - he said the genotyping is not of the children -its of the leukemia itself. OT kids can't help
in that aspect of the research - only kids *with* leukemia can. In other words, they're testing the
leukemic cells, not the children.
Basically, I think the "maximum toxicity" had to do with balancing frontline cures with permanent
damage. I think on relapse, they blast kids with less regard for 'damage' because getting rid of the
cancer once and for all takes precedence. Again, this is what I *think* he meant. So much of his
speech was about protein markers on neuroblastoma cells, a new NB tx that is highly toxic but has
shown a 20% increase in survivorship, and other very complicated information...that the "maximum
toxicity" comment was nearly a throw away comment for him. I'm sure he had no idea what something
like that would mean to one of us.
When I repeated the comment to the congressional liaisons, I did so to prove a point. Ped onc
researchers have done so much, with so little money. They've taken the same drugs they've had for
decades, and continuously tweaked them to maximize their benefits. Its astonishing when you compare
it to the endless research factories churning out new breast cancer drugs. Actually, its very sad too. I
believe Dr. Reaman thinks we've reached the maximum numbers we can for ALL with the current drugs
available. He wants to develop new drugs, new approaches, that will hopefully be less toxic. Frankly, I
would have loved to picked his brain specifically about it...but time and circumstances made that
impossible. I'd love to get a copy of his speech too. I'll try to pester CureSearch and see if that's
possible.
Anyway, I'm sure that made the whole thing "clear as mud". All I know is...the whole thought made me
queasy. It certainly snapped me back to the things we've seen on list. It was eye-opening. Hopefully,
we made some kind of difference at RTD. I can only hope.
Sorry if I confused anyone. Its hard to figure out how to convey info from a very long medical speech
- that I missed parts of because of distractions. I hope I haven't freaked anybody out...I was just so
intrigued by that comment - I had to share, particularly in light of how often we've heard how "lucky"
we all are.
************************************************************************************
I'm hoping that I made some sort of sense in those posts. I know its weird to put something
here that I wrote to my on-line group, but its the best "description" of what I heard...that I can
offer. In all honesty, I do most of my 'best thinking' for my online buddies. They mean the
world to me.
OK, back to the regularly scheduled ranting...
If you are interested in the afore-mentioned research projects, I have linked to some of the
news articles, information below. Its worth reading, the news really is huge.
While I'm talking about the links, I may as well go over what all is down there. I have scanned
in and linked to the papers we gave the congressional liaisons. There are papers describing
CureSearch and the COG, papers describing research breakthroughs, and the really
important ones, outlining exactly what we were there to ask for. As I said earlier, I surrender to
the brilliance of the CureSearch team...they can say it far better than I can.
After Dr. Reaman's speech, we were adjourned for a while, to allow the hotel staff to set up our
dinner, and rearrange the room for the evening program. When I went to retrieve the girls,
they were missing from the Camp Room. Turns out, they were off having their pictures taken.
The pics are adorable! Although, Avalon appears to have some sort of smudge on her upper
lip. Looks to me like yellow marker (which was all over her hands). Why it didn't occur to the
photographer to try to wipe it off... Then again, they know she's the cancer kid. They may
very well have thought it was a bruise. Funny...but kind of sad all at the same time. In the
pics...it will make me bonkers forever.
Soon enough, Ambrosia and Avalon made their return appearance. We gathered their crafts,
and headed out to the lobby to wait for dinner. We made a restroom stop, and even managed
to make it outside to get enough cell phone coverage to call and check on Little Man.
Apparently, he spent the day being a giant rat-fink. So glad I left him at Anne's...so sorry for
Anne and Aurora. Aurora seriously earned major "sissy points" the entire trip...
It honestly didn't take the staff too long to get set up for the dinner. I never managed to chat
with too many people, I was busy getting caught up with our Columbus friends that were there.
I tried to talk to one group of people...and found them to be a little too task-oriented for me. I
know this sounds dorky, but I was rather irritated by the
you-should-bow-to-our-group-pressure approach. I'm a more personal kind of person. I'd
much rather 'chat' about your child, your journey, your hopes...than have stuff crammed down
my throat. I think that's often a problem with anyone who is adamant about 'their cause'. They
get so wrapped up in forcing their point...they drive away the very people they want to rope in.
I mean, c'mon, if I found these people to be over-bearing, how were they going to affect
'outsiders'? Just sayin'...
When we re-entered the ballroom, very little had actually changed. About half the seats had
been removed to allow for some of those "standing" cocktail tables in the rear of the room.
There was a small buffet along one wall, and a newly erected movie screen next to the stage.
We gathered what food we could, and found seats near the front with our friends, to make
sure the kids could see the magician that was slated to appear.
The evening's events started with a major bang. Anyone who has read my site, knows how I
feel about the pediatric cancer charity, "Hope Street Kids". (See the link to one of my posts
about them: I have always loved Hope Street, and have often
directed people to them as a potential charity to give to. They fund fascinating research, and
important to me, come highly recommended by a research doctor that we came to love at
Columbus Children's.
Hope Street Kids was founded by Deborah Price and Randy Walker, parents to Caroline
Price-Walker. Caroline actually dreamed up Hope Street, while on active treatment for
neuroblastoma. Caroline ultimately lost her fight, but her hope and generosity of spirit lives on
in her foundation. Caroline is also the reason the Conquer Childhood Cancer Act came to be,
and is now a reality. The CCCA underwent its official name change, to honor her legacy.
Anyway, the giant news of the night is that Hope Street Kids has chosen to merge with
CureSearch. They will remain as a separate entity, but they are now part of the CureSearch
family - choosing to join in the way the CCG and POG did several years ago to make the
almighty COG (Children's Oncology Group). If the pediatric cancer world has learned
anything...its learned that there is strength in numbers, and hope in cooperation. The coming
together of these two giants is HUGE. It means nothing but good things for our kids.
I fully admit to being terribly distracted during much of the official speeches. Not only did I
have my kids to feed/watch, but there was that giant video screen I mentioned a little earlier.
The screen continuously looped one of CureSearch's awareness videos. The Nick/Avalon
picture was one of 4 pics that are a part of that. The video starts out by focusing on Avalon's
face...then backs up to the full picture, with the caption, "Give children with cancer the chance
to grow up." Powerful stuff...and really hard to process when its next to the face of your
daughter... I've posted two pics of the screen with the video running. But in all honesty, I
probably took more than a dozen. I couldn't wrap my brain around it.
After the official announcement of the merger, it was time for the evening's entertainment. The
magician is a young man who is a cancer survivor himself. His magic is pretty normal stuff, but
considering the doctors didn't think he'd ever walk again, much less do fine motor skills, it was
impressive. However, his repeated tooting of his own horn for his accomplishments, coupled
with a constant 'shushing' of his audience - turned me off a bit. It was my thought that he
should have been there to keep the kids happy while their parents mingled - but he was
obviously agitated that the adults felt the need to speak during his act. I ended up being
aggravated with his ego, rather than impressed by what he has overcome. The good news is,
the kids loved him. I'm also sure he's a great guy, he just didn't handle the crowd/situation in
the best way.
Frankly, the kids loved him way too much. I would have preferred to hit the highway an hour
before we did. Lesson learned, don't let your kids sit in the front row. It makes it impossible to
'sneak' out.
As I was finally leaving for the night, I griped about having to hike it back to Union Station, to
start the trip home. Two of the CureSearch team seemed very worried, and asked me what
train I was heading for. They seemed very relieved when I answered that we were simply
going to our car, to drive to our friend's house. I thought it was odd...until I got to Anne's.
As it turns out, there had been a terrible crash on the Metro that day. The Metro is the DC
subway system. The crash was so big, it made national news. Nick had called Aurora
repeatedly to see if she'd heard from me...and to make sure we were alright. My sister had
called the house, Nick, and eventually Aurora - also checking on us. Everyone knew we'd
been lectured that we just "had to take the Metro...you just can't drive in DC" Good damn
thing I'm stubborn and ignored all those 'had-to's'. We'd have been trapped in the nightmare
tangle underground for hours if I hadn't. The wreck was north of the city - but the fall-out
involved the entire system. I've never been so thrilled to be a tiny bit of a rebel.
We also heard the tales of Mr. Difficult once we got to Anne's. It seems that Anam did his level
best to convince Anne and her boyfriend that children might not be fun after all. Thankfully,
they were both significantly more amused with his rotten attitude than Aurora was. I think
Aurora considered selling him to the gypsies a time or two (or twenty....)
All in all, it was a fascinating, long, exhausting day. I got exactly what I wanted...deep
immersion in Childhood Cancer politics. Glad to be there - terrified of what Anam might pull
during the next day's meetings....
think I actually gasped out loud. I certainly knew that CureSearch loves that image of Nick and
Avalon. Its on their brochures, was on the year-end report two years ago, was on Christmas
cards to Congress in 2007, and is in their awareness video. I know all of that...but I wasn't
prepared to look up and see it 6 feet tall...in front of me...my family.
It was very difficult for me to listen for a while. I was instantly taken back to my first public
speaking engagement after Avalon was diagnosed. I walked into the Circle of Friends evening
gala and burst into tears seeing Avalon's face on the posters. Living with it, and seeing it in a
more remote, impersonal form like a poster....well, its two entirely different things. I can still
"feel" those days...how terrified we were during her port infections, how awful it was every day
the nurse came to change her dressing and "pack" the open hole in her chest that the
bandage in the picture is hiding... That photo represents the fragility of all cancer families, I
love it as much as they do. But on a personal note - it represents my Hell...and it can
sometimes take me a bit to adjust to it. I know that sounds weird, heck, I have that very picture
hanging at the top of my stairs. Every time I walk up the stairs, I smile at it. The same picture
hangs in the hallway just before you enter our hospital's cancer ward. Every time I walk past it,
in or out of the unit, I kiss my hand, and touch it to their cheeks. That picture represents so
much to my heart...I could spend a lifetime trying to explain it. On this day, in this space...it
meant more than mere words could hope to convey. It was...daunting.
As soon as I gathered myself, I tried to pay as close attention as I could. The first session was
for first-time attendees at Reach the Day. I soon discovered, I probably could have skipped it.
The lecture was about being an advocate, about connecting with the congressional liaisons on
a personal level. Yes, the political mumbo jumbo is important - but not necessarily for the
families to worry about. Our job was to make cancer real for them. Our job was to touch their
hearts.
I did, however, learn a lot about "funding" during that first meeting. I learned that just because
we got the Act passed into law, doesn't necessarily mean it will ever get funded. Making it a
law makes it so Congress can legally fund it, but it certain doesn't mean they have to. Funny
how that kind of thing isn't covered in high school government class. We also learned that we
would most likely be meeting with congressional liaisons rather than the actual senators or
representatives. Liaisons are paid staffers, each of whom specializes in a certain area of
government. There is so much to know, so much to learn - its far too much for each
Congressperson to fully comprehend. The staffers specialize in foreign affairs, homeland
security, health issues, etc. They take in the information, then make informed
recommendations to their bosses. Basically, we learned we should be happy we were
scheduled with the liaisons, its in our best interest.
Overall, the first meeting was about teaching people to do what I've been doing for the past 4
years, help outsiders understand why our kids matter, and what its like to live our lives. I knew
what Kate was saying, but its a hard concept to fully explain. People need to almost walk in
our shoes...before they fully get it. What a lot of us share, is too easy for people to "ignore".
Sometimes, finding that common thread - is as delicate as threading a needle - you have to
pay close attention. What speaks to one audience, may turn off another. I think lobbying is
like successful public speaking - "feel" your audience, and mold to them - rather than a
one-size-fits-all approach. Which, by the way, is waaayyy easier in theory than in practice.
After the first session, I introduced myself to Kate from CureSearch. It was great to finally have
a face to go with the name and voice. I also ended up meeting Sally, another lovely lady I've
had several chats with. I hope to have several more talks with both of them...cross your
fingers.
I soon went to fetch my little ones, so we could spend a little time together before the next
session. As it turns out, Sally asked the three of us if we would do a video-taped interview for
CureSearch. Of course we agreed, we were there to help, any way we could.
Wow...that interview ended up being much more difficult than I thought. Every family was
asked the same list of questions. The hope is to combine the interviews, choosing several
answers to each question - trying to help people see things from our points of view. I freely
admit that I often cry when I speak publicly. Oddly enough, I can talk about Avalon's
procedures, diagnoses, etc with very few problems. The tears generally come, when I try to
talk about the extreme kindnesses that have been done for Avalon, or our family. Avalon
turned two in the hospital. I can NEVER talk about that night without crying. (tears are running
as I type this) From the ER transfer staff that sang loudly to her as they took her up to a room
on the unit, to her fellow, who quietly knelt by her bed in the dark of night to sing "Happy
Birthday" to her...they are memories that are so precious...I hope I never quit crying.
At Reach the Day, I never imagined I'd lose my resolve. I was so grateful to be there, to finally
be able to give back, it never occurred to me how one little question would affect me. The
video crew and I had been chatting and laughing. The girls were being friendly, and the
people were very nice. Once the interview started, they asked a simple question, "Why is this
important to you?" I lost it.
How can I answer that? Why is this important? Because I still have my baby! Because other
mothers I know don't. Because in our country we just spent billions of dollars on the swine flu,
when less than 500 people worldwide have died from it...and yet more than 3000 mothers will
have empty arms this year alone...because of Childhood Cancer. Why is this important?
Because our children DIE and are maimed...and no one seems to notice. If you add together
the yearly deaths from all other childhood illnesses...they barely equal deaths from pediatric
cancer. Why the Hades isn't that front page news?! Why did I have to nearly lose my
daughter before I knew about it? Its important because our kids matter....they need a voice.
They deserve a chance at life. They need to be heard....
Yep, I was a wreck. It was hard on my girls too. Thankfully, they gave us a few minutes to
recover, and I think I did better with the rest of it. I walked out of there shocked at myself. I
guess I didn't know how heavy this all rests on my soul. I'm sorry I cried, but I'm also not. I
can't hide the pain, I live with it. I guess I need to learn to be OK with sharing it.
After our video moments, it was time for the girls to head back to Camp CureSearch. From
what I understand, the "Camp" idea was new this year. They were trying to help the parents
who choose to bring their children - have a distraction that will allow the parents to pay closer
attention. I was thrilled for that. My girls met wonderful kids, and had a great time making
posters and cancer kid crafts. The poster Ambrosia is holding in the video I linked to - is the
one she made during "Camp".
The evening session was for everyone attending Reach the Day. During the session, Kate
carefully outlined the history of funding for pediatric cancer research, and where our money
has historically come from. She explained the details of what we "want" from Congress, but
assured us that we needn't focus on them, just work to make our stories real for the liaisons.
The Congresspeople and their staff understand the ins and outs of what we're asking already
- our job was to pull at their heartstrings and actually convince them to do it.
The second part of the evening session was a speech by Dr. Reaman, the head of the COG.
He was there to report on recent news on the research front, and to address why the $30
million dollars the CCCA promises can make such a huge difference. Dr. Reaman is a brilliant
and dedicated researcher - but he might benefit from a lesson or two in 'knowing his
audience'. The current research trends and breakthroughs are terribly exciting, but I think his
very honest, very technical presentation was over the heads of most of the attendees. In a
perfect environment, I think I could have understood nearly all of it, but interruptions, noise
from the crowd, etc - left me in a less-than-ideal state for concentrating. I'm not really sure
how to improve on the speech. The fact is, what is currently being explored is very in-depth,
and very innovative. 'Dumbing it down' wouldn't have been easy, but I think it might have
been prudent.
In essence, the biggest breakthroughs, and research directions, have to do with genetically
typing various cancers. In other words, the researchers are looking to develop more directed,
targeted approaches. By matching chemotherapies to exact genotypes of leukemias, tumors,
etc...the hope is to A) gain success with resistant cancers, and B) produce less unacceptable
side effects. Gene-specific therapies should have less collateral damage than broad spectrum
ones. Rather than figure out how to explain this all again, I'm going to plagiarize myself. Below
are two posts I wrote to my online group, ALL-Kids. Hopefully, they'll make sense.
Post 1 - in response to a thread for how "Easy" ALL treatment is:
"Anyway, I'm not ready to post everything to Avalon's site yet, but I had to share something. Monday
evening, the head of the COG (Children's OncologyGroup) spoke to the RTD crowd about current
research projects, recent breakthroughs, etc. His intent was to keep us informed, as well as to fire
us up a tad about why we needed to push for the Caroline Pryce Walker Conquer Childhood Cancer Act
to be fully funded.
Dr. Reaman (head of COG) is a brilliant and dedicated man, but not terribly skilled at gearing speeches
toward their intended audiences. Much of his presentation was far too technical for a large percentage
of the audience, but there were several very key points to take from it. First of all, the largest
"breakthroughs" are in genetic typing of leukemias and neuroblastomas. By gearing treatments
specifically toward the genotypes of the cancers, the hope is to A) gain higher cure rates for NB
(dismally low compared to ALL) and for better results with our ALL kiddos.
I'll speak to the ALL part only here. I caught the gist of what he was saying, but am definitely not 100%
proficient. Basically, the discussion was about the kiddos like some in our group, who are MMHR...? +
(I know I have those initials wrong...forgive me!) Now that we can type out and recognize the
kids who are more sensitive to certain drugs, yet more likely to experience relapse...we can do a better
job at directing treatments appropriately. Folks, when Avalon was dx nearly 5 yrs ago, we didn't have a
lot of the testing parameters (or understanding) we do now. (EX no MRD testing)
When I spoke to Dr. Reaman the next day, he said I had understood correctly. Researchers are working
to better understand the genotypes of the different leukemias, so we can PREVENT kids with permanent
toxicities like Avalon. How cool is that? I love the idea that some day we'll be able to pre-identify kiddos
like her, and adjust meds to make sure other people don't have these issues. Neat! Not to mention, the
hope that we will be better able to help the kids with 'resistant' strains.
While this email may seem odd for this thread...I'm leading up to the relevance. Dr. Reaman said
something in his speech that made my blood run cold. I repeated it the next day to each of our
Congressional representatives - and will continue to repeat it forever. As Dr. Reaman discussed the
importance of research into new drugs, he mentioned ALL. He said (and yes, this is as near of an exact
quote as I can get), "We've reached maximum toxicity with ALL chemotherapy." (from here, I'm
paraphrasing more) 'We've pushed the doses as far as we can. New advances in ALL will only be made
if we can invent new drug therapies.'
I apologize for the second half of that not being exact...but my head was swimming with the first
statement. "We've reached maximum toxicity with ALL chemotherapy"... That rattled me to the core. I
thought of the intracranial hypertension kids on this list...the AVN kids...the digestion issues...not to
mention frontline kids like Will who have been lost to VOD, something that only the toxicity of BMT
should cause. We really have maxed out our kids and their fragile little bodies. AND WE ARE
SUPPOSED TO HAVE THE "EASY" CANCER!
I have heard the toxicity phrase hundreds of times in my head the past few weeks. I'm not sure how I
feel about it. Yes, I'm GRATEFUL that we've pushed so hard with the miniscule amount of research
money we have...that our ALL kids have such great survival rates. Of course, I'm beyond blessed
that we benefitted from that work, and still have Avalon. But part of me is numb, hearing "maximum
toxicity" - its so terribly sad that its all our doctors/researchers have had at their disposal. I suppose it
may become my new battle cry.
My long winded point is this...CRAP FOOEY on the "easy cancer" bunk. Our kids are tortured,
tormented, poisoned, and defiled. We do it in the name of LOVE...but its still awful. I'm fully ready to
whack the next dung-digger that says this is "easy". I have a vice grip for their personals and army ants
for their gym shorts. After I shave their head and whomp it with a hammer, I'll ask them if they feel
"Lucky". After doing the same thing for a minimum of two years....I'll ask them again.
With stick and ant farm in hand...
Alicia - Avalon's proud mommy
*********************************************************************************************************************
This was a question - posted in response to the above information:
"Alicia, I'm a little confused by what "maximum toxicity" means... what about kids who relapse and get
blasted with 2 1/2 more years of chemo or BMT? Relapse chemo is WAY more intense than frontline
chemo - so I guess I don't understand how frontline chemo can be considered maximum toxicity."
********************************************************************************************************************
Here is part two of my posting about the medical lecture from Dr. Reamer
"I'm not sure I 100% understand either - like I said it was a comment in a sea of intense medical info. I
took it to mean that the researchers are at the end of their rope with the levels they give our frontline
kids. Kind of like with what we've seen on list with Dex and AVN. They've increased doses, increased
length of time, etc - and have achieved the best benefits they feel they can, without causing damaging
effects (like VOD, etc) Dr. Reaman seemed to be saying that they don't think they can improve general
numbers with the chemos we have now - that we've pushed them as far as we can. The "hope" lies in
understanding more about specific genotypes of leukemias and in somehow, someday, having enough
research money to invent entirely new drugs. The new amazing developments are all in gene-centered
therapies.
With gene-centered therapy, drugs will hopefully eventually be kind of 'designer' - made for specific
types of leukemia, tumors, etc...rather than the one-size-fits-all approach we have now. For example, in
the future, Child A's leukemia would be exactly 'typed' - showing that she needed "X" to make sure it
was completely eradicated on frontline. Avalon's leukemia would be 'identified' as 'blah-blah' type,
showing sensitivity to certain drugs and a proclivity to late effects. Does that make any sense?
I asked Dr. Reaman if they were eventually going to study kids with late effects like Avalon, or relapsers
- to kind of 'fill out' the research data. My thought was, Avalon has A, B, C problems...so she
supports that 'kids of genotype blah blah' will likely have those issues. That's when Dr. Reaman
corrected me - he said the genotyping is not of the children -its of the leukemia itself. OT kids can't help
in that aspect of the research - only kids *with* leukemia can. In other words, they're testing the
leukemic cells, not the children.
Basically, I think the "maximum toxicity" had to do with balancing frontline cures with permanent
damage. I think on relapse, they blast kids with less regard for 'damage' because getting rid of the
cancer once and for all takes precedence. Again, this is what I *think* he meant. So much of his
speech was about protein markers on neuroblastoma cells, a new NB tx that is highly toxic but has
shown a 20% increase in survivorship, and other very complicated information...that the "maximum
toxicity" comment was nearly a throw away comment for him. I'm sure he had no idea what something
like that would mean to one of us.
When I repeated the comment to the congressional liaisons, I did so to prove a point. Ped onc
researchers have done so much, with so little money. They've taken the same drugs they've had for
decades, and continuously tweaked them to maximize their benefits. Its astonishing when you compare
it to the endless research factories churning out new breast cancer drugs. Actually, its very sad too. I
believe Dr. Reaman thinks we've reached the maximum numbers we can for ALL with the current drugs
available. He wants to develop new drugs, new approaches, that will hopefully be less toxic. Frankly, I
would have loved to picked his brain specifically about it...but time and circumstances made that
impossible. I'd love to get a copy of his speech too. I'll try to pester CureSearch and see if that's
possible.
Anyway, I'm sure that made the whole thing "clear as mud". All I know is...the whole thought made me
queasy. It certainly snapped me back to the things we've seen on list. It was eye-opening. Hopefully,
we made some kind of difference at RTD. I can only hope.
Sorry if I confused anyone. Its hard to figure out how to convey info from a very long medical speech
- that I missed parts of because of distractions. I hope I haven't freaked anybody out...I was just so
intrigued by that comment - I had to share, particularly in light of how often we've heard how "lucky"
we all are.
************************************************************************************
I'm hoping that I made some sort of sense in those posts. I know its weird to put something
here that I wrote to my on-line group, but its the best "description" of what I heard...that I can
offer. In all honesty, I do most of my 'best thinking' for my online buddies. They mean the
world to me.
OK, back to the regularly scheduled ranting...
If you are interested in the afore-mentioned research projects, I have linked to some of the
news articles, information below. Its worth reading, the news really is huge.
While I'm talking about the links, I may as well go over what all is down there. I have scanned
in and linked to the papers we gave the congressional liaisons. There are papers describing
CureSearch and the COG, papers describing research breakthroughs, and the really
important ones, outlining exactly what we were there to ask for. As I said earlier, I surrender to
the brilliance of the CureSearch team...they can say it far better than I can.
After Dr. Reaman's speech, we were adjourned for a while, to allow the hotel staff to set up our
dinner, and rearrange the room for the evening program. When I went to retrieve the girls,
they were missing from the Camp Room. Turns out, they were off having their pictures taken.
The pics are adorable! Although, Avalon appears to have some sort of smudge on her upper
lip. Looks to me like yellow marker (which was all over her hands). Why it didn't occur to the
photographer to try to wipe it off... Then again, they know she's the cancer kid. They may
very well have thought it was a bruise. Funny...but kind of sad all at the same time. In the
pics...it will make me bonkers forever.
Soon enough, Ambrosia and Avalon made their return appearance. We gathered their crafts,
and headed out to the lobby to wait for dinner. We made a restroom stop, and even managed
to make it outside to get enough cell phone coverage to call and check on Little Man.
Apparently, he spent the day being a giant rat-fink. So glad I left him at Anne's...so sorry for
Anne and Aurora. Aurora seriously earned major "sissy points" the entire trip...
It honestly didn't take the staff too long to get set up for the dinner. I never managed to chat
with too many people, I was busy getting caught up with our Columbus friends that were there.
I tried to talk to one group of people...and found them to be a little too task-oriented for me. I
know this sounds dorky, but I was rather irritated by the
you-should-bow-to-our-group-pressure approach. I'm a more personal kind of person. I'd
much rather 'chat' about your child, your journey, your hopes...than have stuff crammed down
my throat. I think that's often a problem with anyone who is adamant about 'their cause'. They
get so wrapped up in forcing their point...they drive away the very people they want to rope in.
I mean, c'mon, if I found these people to be over-bearing, how were they going to affect
'outsiders'? Just sayin'...
When we re-entered the ballroom, very little had actually changed. About half the seats had
been removed to allow for some of those "standing" cocktail tables in the rear of the room.
There was a small buffet along one wall, and a newly erected movie screen next to the stage.
We gathered what food we could, and found seats near the front with our friends, to make
sure the kids could see the magician that was slated to appear.
The evening's events started with a major bang. Anyone who has read my site, knows how I
feel about the pediatric cancer charity, "Hope Street Kids". (See the link to one of my posts
about them: I have always loved Hope Street, and have often
directed people to them as a potential charity to give to. They fund fascinating research, and
important to me, come highly recommended by a research doctor that we came to love at
Columbus Children's.
Hope Street Kids was founded by Deborah Price and Randy Walker, parents to Caroline
Price-Walker. Caroline actually dreamed up Hope Street, while on active treatment for
neuroblastoma. Caroline ultimately lost her fight, but her hope and generosity of spirit lives on
in her foundation. Caroline is also the reason the Conquer Childhood Cancer Act came to be,
and is now a reality. The CCCA underwent its official name change, to honor her legacy.
Anyway, the giant news of the night is that Hope Street Kids has chosen to merge with
CureSearch. They will remain as a separate entity, but they are now part of the CureSearch
family - choosing to join in the way the CCG and POG did several years ago to make the
almighty COG (Children's Oncology Group). If the pediatric cancer world has learned
anything...its learned that there is strength in numbers, and hope in cooperation. The coming
together of these two giants is HUGE. It means nothing but good things for our kids.
I fully admit to being terribly distracted during much of the official speeches. Not only did I
have my kids to feed/watch, but there was that giant video screen I mentioned a little earlier.
The screen continuously looped one of CureSearch's awareness videos. The Nick/Avalon
picture was one of 4 pics that are a part of that. The video starts out by focusing on Avalon's
face...then backs up to the full picture, with the caption, "Give children with cancer the chance
to grow up." Powerful stuff...and really hard to process when its next to the face of your
daughter... I've posted two pics of the screen with the video running. But in all honesty, I
probably took more than a dozen. I couldn't wrap my brain around it.
After the official announcement of the merger, it was time for the evening's entertainment. The
magician is a young man who is a cancer survivor himself. His magic is pretty normal stuff, but
considering the doctors didn't think he'd ever walk again, much less do fine motor skills, it was
impressive. However, his repeated tooting of his own horn for his accomplishments, coupled
with a constant 'shushing' of his audience - turned me off a bit. It was my thought that he
should have been there to keep the kids happy while their parents mingled - but he was
obviously agitated that the adults felt the need to speak during his act. I ended up being
aggravated with his ego, rather than impressed by what he has overcome. The good news is,
the kids loved him. I'm also sure he's a great guy, he just didn't handle the crowd/situation in
the best way.
Frankly, the kids loved him way too much. I would have preferred to hit the highway an hour
before we did. Lesson learned, don't let your kids sit in the front row. It makes it impossible to
'sneak' out.
As I was finally leaving for the night, I griped about having to hike it back to Union Station, to
start the trip home. Two of the CureSearch team seemed very worried, and asked me what
train I was heading for. They seemed very relieved when I answered that we were simply
going to our car, to drive to our friend's house. I thought it was odd...until I got to Anne's.
As it turns out, there had been a terrible crash on the Metro that day. The Metro is the DC
subway system. The crash was so big, it made national news. Nick had called Aurora
repeatedly to see if she'd heard from me...and to make sure we were alright. My sister had
called the house, Nick, and eventually Aurora - also checking on us. Everyone knew we'd
been lectured that we just "had to take the Metro...you just can't drive in DC" Good damn
thing I'm stubborn and ignored all those 'had-to's'. We'd have been trapped in the nightmare
tangle underground for hours if I hadn't. The wreck was north of the city - but the fall-out
involved the entire system. I've never been so thrilled to be a tiny bit of a rebel.
We also heard the tales of Mr. Difficult once we got to Anne's. It seems that Anam did his level
best to convince Anne and her boyfriend that children might not be fun after all. Thankfully,
they were both significantly more amused with his rotten attitude than Aurora was. I think
Aurora considered selling him to the gypsies a time or two (or twenty....)
All in all, it was a fascinating, long, exhausting day. I got exactly what I wanted...deep
immersion in Childhood Cancer politics. Glad to be there - terrified of what Anam might pull
during the next day's meetings....
| Looking at the room from the dais. |
| This is what I looked up and saw in that first meeting. |
| Yep, this was one of those 'had to' pictures! |
| See how HUGE the poster was?! |
| Deborah Pryce speaking at the early-evening meeting. |
| Rourke and Jessica, our buddies from Ohio. Best lobbying partners, ever! |
| Magician |
| New 'Camp CureSearch' friends |
| These are the links I mentioned in the above writing. |