Hello my friends!
No - I have not fallen completely off of the face of the planet...I've just slid rather quietly into a
cave as of late. If you'll bear with me, I'll try to explain a bit.
I can hardly believe that its been a full month since I've pestered you. To all of you who have
called, emailed, called another one of our e-family members, or hassled me in person...I love
you! With every email, I worry about bothering you. It was very nice of several of you to let me
know you were worried about us. Thank you!
Frankly, the biggest reason for my silence has been my own mental health. I've been on a
"mental hiatus" this past month...completely shutting myself down from the website and the
outside world. I'll use this email to try to explain what happened...and then do the "updates"
separately.
My last email told you about the cold we were all sharing, and the impending fundraising event
that evening - June 17th. The fundraising event was for Circle of Friends. CoF is a local charity
here in Columbus that raises money solely for pediatric cancer research. 100% of the money
raised goes straight to the cancer research division at the Columbus Children's Hospital.
Needless to say, I'm a huge supporter and fan of the group. My job that Saturday night was to
speak about our experience.
I'll write a separate piece about the event itself, but I need to explain here - what the event
essentially "did" to me. I chose to speak about our diagnosis experience. In fact, I plagiarized
myself - and read a few paragraphs from my diagnosis letter. I wanted to take the guests with
us as we began this journey - to let them all know how important their efforts are to those of us
in the fight. I planned the speech, I wrote it...but, wow...I had no idea how difficult it would be to
deliver it.
However, my effort paled in comparison to that of the speaker before me. The other speaker
lost her son to cancer, at 6 years of age. For seven years, she has publicly relived her
nightmare to remind people how important it is to continue fighting the beast. I admire her
strength and commitment more than I can say. What I can say...is that she apparently affected
me deeply.
I know you've all taken our journey to heart. I also know that you all cry for Avalon, worry about
Avalon, and often fear, and stress when we don't seem to be. When you're in the middle of this,
you have to somewhat separate yourself from the reality of it. If I walked around constantly
focusing on the fact that my daughter has cancer...I'd lose my mind. For the most part, we see
her as a normal, happy little toddler. Only sometimes are we forced to see the reality.
I don't know if I'm going to be able to explain this well. Yes, I know my daughter is terribly ill.
Yes, we give scads of medicine, have worn a path to the hospital, and have discussions about
medical procedures as often and as easily as most people do about the playground. I know
that. But truthfully, we don't focus on what causes all of it, we just live with it. We grocery shop,
go to dance class, trip over toys...we live life just like anyone else. The biggest difference is the
mind numbing fear that lives in the dark recesses of our minds. I knew it was there - I just didn't
know how big it really was until recently.
No matter how positive you are that your child will be healed...no matter how good you are at
making lemonade when life gives you lemons...no matter how often you remind yourself and the
world that this is just a temporary inconvenience...the fact is, cancer is terrifying. I think all
parents of seriously ill children have a dark place in their minds - we just try not to go there.
The reality is, we know our children can die - at any time, and with very little warning. We've
been warned, we've somewhat prepared ourselves for the possibility, and the longer we're
actively part of the cancer family...the more often we hear about it. Unfortunately, the unrealistic
fear of something horrible happening to your child...is very realistic for us.
Those of you who have been in the trenches with us for most of this, know I've battled these
demons before. After repeated hospitalizations this Spring, I gave in to the fear the night of her
birthday. My grief about being in the hospital that night didn't have as much to do with her
birthday...as it did with the all-encompassing fear that was creeping in from all sides. I have
been able to scoff at some of our hospitalizations...but honestly, each fever strikes terror in my
heart. All it takes is one fever, one infection - and I can lose the battle. I know that, and
sometimes its mind-numbing having to try to forget it.
The week of the event brought all of the fleeting horrors into focus - and into the front of my
mind - rather than the depths where they've happily lived for months. I told all of you how
horrible it was to see the pictures that were done at Kent Smith Photography. They were
beautiful - and quite accurate in their portrayal of Avalon as a child of cancer. I suddenly came
face to face with her as other people see her - and it was terrifying. On the heels of that, came
her port placement surgery...and hospitalization for a fever.
Following the fever, we attended the 5K walk/run for Circle of Friends, where I once again had to
face Avalon's fragility and illness - head on. And if that wasn't enough to open the door to the
demons...I finished it all with the event. At the event, I not only got to relive our darkest hours
publicly, but I got to meet the personification of my fears - face to face. I regret none of it, I'm
grateful for every minute of it, but I admit...it affected me deeply.
When I couldn't bring myself to write about the event, I realized that maybe I needed a few days
"off" (so to speak). A few days, turned into a few weeks - before I realized just exactly what was
pushing me away from the computer. Rather than write about Avalon, I just immersed myself in
enjoying her. For lack of a better description...it was like I was trying to grab at every parenting
second I could...in case something were to end them prematurely. After a few weeks, I realized
what I was doing, came to grips with the melt-down I had apparently been having, and steeled
myself to figure out how to describe it to all of you.
Because I knew it would take time to sort it out, and be able to explain it - I decided to write
about it on a Thursday - when Nick would be home because of chemo. Great plan, until the
bottom fell out. The "bottom" being Avalon's numbers. With no warning, and no signs -
Avalon's ANC crashed to 84. In case you forget - ANC stands for Absolute Neutrophil Count -
the number of white blood cells she has capable of fighting a bacterial infection. A normal child
is 14,000-17,000. They want our kids to be above 1000 - anything less is dangerous. Avalon's
84 was awful.
Suddenly, just as I was going to try to explain the latent fears that had been paralyzing me - they
came back full force and threatened to eat me alive. ANC's like that are when we lose tiny
warriors. We all were scared...but I think I was nearly frozen. After convincing myself that I
should put the demons back in the closet - that they weren't going to apply to our life - it was as
if the universe was reminding me how vulnerable Avalon truly is. No hiding from reality - no
pretending she was invincible - Avalon has cancer and is every bit as frail as any other victim of
the beast. So much for me being able to share my journey with you...I retreated back to a very
scary, very awful place in my mind.
Because one blood value had been particularly high - the nurse practitioner felt Avalon's ANC
would jump up very quickly. The high value is normally an indicator that the bone marrow is
about to go crazy and produce the white blood cells that Avalon needed. With that logic, Nick
was confident, and did his best to reassure me. In fact, it did help - and I did manage to
maintain enough sanity, to look forward to sending you an update that said we weathered the
storm valiantly - all by ourselves.
The following week, as we waited to hear the results, it never occurred to us, that the news
would be bad. In fact, it was horrid. Avalon's ANC didn't jump up - it went down further to a
mere 42. Oh yeah, panic was now a permanent resident in my heart. Because a course of
Zithromax had failed to ease Avalon's symptoms, we knew she was fighting a virus. Adding a
long-term virus, to a non-existent ANC, and the resulting fears were for monsters like viral
pneumonia. Not to mention the very real possibility that naturally occurring bacteria from her
gut could easily escape and wreak havoc in the rest of her body. How about the fact that C-diff
could still be lurking in her system? Aaack! I had no shortage of very real things to worry
about.
So, for another week, I tormented myself with the worst imaginable scenarios and thoughts. I
know it was fear run amuck - but I suppose at some point in this process we all give in to it. Nick
may not be verbalizing it as much as I am, but his insomnia, irritability, and obsessive work
habits speak volumes that he's not willing to on his own. I think he's been as terrified as I am,
we just haven't quite figured out how to effectively verbalize those fears enough to alleviate
them. I'm sure any shrink would have a field day with us, but I'm also pretty sure I could save
him the time. A) Our daughter has cancer. B) The fact is, we can lose her - and its horrifying.
The trick to mental survival is to lock A and B deep in the back of our psyche. Not so deep that
we forget to be obsessively clean and careful...but deep enough that we don't wreak havoc on
our daily lives.
Admittedly, the demons escaped the dark place these past several weeks. But I'm happy to
report, that we're doing a decent job of reining them in now. Avalon's ANC was 2067 this past
Thursday. She's bouncy, happy, and throwing temper tantrums that would make any 2 year old
proud. She's embracing the terrible twos in all their glory...and its wonderful! I know my
personal battles aren't over - but I survived this round, and look forward to the final victory bell.
I'm not sharing all of this for any sympathy, just for information. We all have our personal
demons. I know that each of you has your own battle grounds, in your own "mind" fields. By
welcoming you into our fight, I hope we help you find the strength to fight your own monsters.
Each of you, all of the love and support you share with us...all of it, is the arsenal we fight with.
When I think I'm at the very last, not-one-more-inch end of my rope...I always find a knot you've
tied for me to hang on to. I can't tell you how much we appreciate all of your support. I hope to
someday make you all proud with what we give back to the community. You are all our beacons
of hope and strength...and we adore you for it. Therefore, this explanation comes with a very
real, very heartfelt apology. I'm sorry I left you all in the dark for so long.
With that being said, this will be my last email, in the manner that you've become accustomed to.
I'm going to take a cue from a cancer friend, and only send you notifications that I've posted on
the web site. That way, I will no longer clog your in-box, or assault your private email. If you
wish to read an update, you will be able to click on the link, and read away. If you've had it up to
your eyeballs with my shenanigans...you can delete and move on. I never wanted to bother
anyone...just share our journey. Please let me know if you tire of receiving any emails. I
appreciate any time you have spent with us, and would not be offended if you are finished
walking with us. Conversely, if you hate the link thing, and wish for me to continue directly
sending you my letters, I would be thrilled to do so. Just let me know.
Please, please, PLEASE keep emailing us! I cherish every email, every word. If I have
periodically missed replying (especially this past month) I whole heartedly apologize. Your
letters are gold to us. I have printed and kept every one for Avalon. I look forward to the day
she can sit and read your beautiful thoughts and prayers on her behalf. She is blessed beyond
words. I know she'll go on to do great things...
You have all touched our hearts deeply...and we appreciate you.
Love to ALL of you,
Alicia, Nick, Aurora, Ambrosia, and Avalon
No - I have not fallen completely off of the face of the planet...I've just slid rather quietly into a
cave as of late. If you'll bear with me, I'll try to explain a bit.
I can hardly believe that its been a full month since I've pestered you. To all of you who have
called, emailed, called another one of our e-family members, or hassled me in person...I love
you! With every email, I worry about bothering you. It was very nice of several of you to let me
know you were worried about us. Thank you!
Frankly, the biggest reason for my silence has been my own mental health. I've been on a
"mental hiatus" this past month...completely shutting myself down from the website and the
outside world. I'll use this email to try to explain what happened...and then do the "updates"
separately.
My last email told you about the cold we were all sharing, and the impending fundraising event
that evening - June 17th. The fundraising event was for Circle of Friends. CoF is a local charity
here in Columbus that raises money solely for pediatric cancer research. 100% of the money
raised goes straight to the cancer research division at the Columbus Children's Hospital.
Needless to say, I'm a huge supporter and fan of the group. My job that Saturday night was to
speak about our experience.
I'll write a separate piece about the event itself, but I need to explain here - what the event
essentially "did" to me. I chose to speak about our diagnosis experience. In fact, I plagiarized
myself - and read a few paragraphs from my diagnosis letter. I wanted to take the guests with
us as we began this journey - to let them all know how important their efforts are to those of us
in the fight. I planned the speech, I wrote it...but, wow...I had no idea how difficult it would be to
deliver it.
However, my effort paled in comparison to that of the speaker before me. The other speaker
lost her son to cancer, at 6 years of age. For seven years, she has publicly relived her
nightmare to remind people how important it is to continue fighting the beast. I admire her
strength and commitment more than I can say. What I can say...is that she apparently affected
me deeply.
I know you've all taken our journey to heart. I also know that you all cry for Avalon, worry about
Avalon, and often fear, and stress when we don't seem to be. When you're in the middle of this,
you have to somewhat separate yourself from the reality of it. If I walked around constantly
focusing on the fact that my daughter has cancer...I'd lose my mind. For the most part, we see
her as a normal, happy little toddler. Only sometimes are we forced to see the reality.
I don't know if I'm going to be able to explain this well. Yes, I know my daughter is terribly ill.
Yes, we give scads of medicine, have worn a path to the hospital, and have discussions about
medical procedures as often and as easily as most people do about the playground. I know
that. But truthfully, we don't focus on what causes all of it, we just live with it. We grocery shop,
go to dance class, trip over toys...we live life just like anyone else. The biggest difference is the
mind numbing fear that lives in the dark recesses of our minds. I knew it was there - I just didn't
know how big it really was until recently.
No matter how positive you are that your child will be healed...no matter how good you are at
making lemonade when life gives you lemons...no matter how often you remind yourself and the
world that this is just a temporary inconvenience...the fact is, cancer is terrifying. I think all
parents of seriously ill children have a dark place in their minds - we just try not to go there.
The reality is, we know our children can die - at any time, and with very little warning. We've
been warned, we've somewhat prepared ourselves for the possibility, and the longer we're
actively part of the cancer family...the more often we hear about it. Unfortunately, the unrealistic
fear of something horrible happening to your child...is very realistic for us.
Those of you who have been in the trenches with us for most of this, know I've battled these
demons before. After repeated hospitalizations this Spring, I gave in to the fear the night of her
birthday. My grief about being in the hospital that night didn't have as much to do with her
birthday...as it did with the all-encompassing fear that was creeping in from all sides. I have
been able to scoff at some of our hospitalizations...but honestly, each fever strikes terror in my
heart. All it takes is one fever, one infection - and I can lose the battle. I know that, and
sometimes its mind-numbing having to try to forget it.
The week of the event brought all of the fleeting horrors into focus - and into the front of my
mind - rather than the depths where they've happily lived for months. I told all of you how
horrible it was to see the pictures that were done at Kent Smith Photography. They were
beautiful - and quite accurate in their portrayal of Avalon as a child of cancer. I suddenly came
face to face with her as other people see her - and it was terrifying. On the heels of that, came
her port placement surgery...and hospitalization for a fever.
Following the fever, we attended the 5K walk/run for Circle of Friends, where I once again had to
face Avalon's fragility and illness - head on. And if that wasn't enough to open the door to the
demons...I finished it all with the event. At the event, I not only got to relive our darkest hours
publicly, but I got to meet the personification of my fears - face to face. I regret none of it, I'm
grateful for every minute of it, but I admit...it affected me deeply.
When I couldn't bring myself to write about the event, I realized that maybe I needed a few days
"off" (so to speak). A few days, turned into a few weeks - before I realized just exactly what was
pushing me away from the computer. Rather than write about Avalon, I just immersed myself in
enjoying her. For lack of a better description...it was like I was trying to grab at every parenting
second I could...in case something were to end them prematurely. After a few weeks, I realized
what I was doing, came to grips with the melt-down I had apparently been having, and steeled
myself to figure out how to describe it to all of you.
Because I knew it would take time to sort it out, and be able to explain it - I decided to write
about it on a Thursday - when Nick would be home because of chemo. Great plan, until the
bottom fell out. The "bottom" being Avalon's numbers. With no warning, and no signs -
Avalon's ANC crashed to 84. In case you forget - ANC stands for Absolute Neutrophil Count -
the number of white blood cells she has capable of fighting a bacterial infection. A normal child
is 14,000-17,000. They want our kids to be above 1000 - anything less is dangerous. Avalon's
84 was awful.
Suddenly, just as I was going to try to explain the latent fears that had been paralyzing me - they
came back full force and threatened to eat me alive. ANC's like that are when we lose tiny
warriors. We all were scared...but I think I was nearly frozen. After convincing myself that I
should put the demons back in the closet - that they weren't going to apply to our life - it was as
if the universe was reminding me how vulnerable Avalon truly is. No hiding from reality - no
pretending she was invincible - Avalon has cancer and is every bit as frail as any other victim of
the beast. So much for me being able to share my journey with you...I retreated back to a very
scary, very awful place in my mind.
Because one blood value had been particularly high - the nurse practitioner felt Avalon's ANC
would jump up very quickly. The high value is normally an indicator that the bone marrow is
about to go crazy and produce the white blood cells that Avalon needed. With that logic, Nick
was confident, and did his best to reassure me. In fact, it did help - and I did manage to
maintain enough sanity, to look forward to sending you an update that said we weathered the
storm valiantly - all by ourselves.
The following week, as we waited to hear the results, it never occurred to us, that the news
would be bad. In fact, it was horrid. Avalon's ANC didn't jump up - it went down further to a
mere 42. Oh yeah, panic was now a permanent resident in my heart. Because a course of
Zithromax had failed to ease Avalon's symptoms, we knew she was fighting a virus. Adding a
long-term virus, to a non-existent ANC, and the resulting fears were for monsters like viral
pneumonia. Not to mention the very real possibility that naturally occurring bacteria from her
gut could easily escape and wreak havoc in the rest of her body. How about the fact that C-diff
could still be lurking in her system? Aaack! I had no shortage of very real things to worry
about.
So, for another week, I tormented myself with the worst imaginable scenarios and thoughts. I
know it was fear run amuck - but I suppose at some point in this process we all give in to it. Nick
may not be verbalizing it as much as I am, but his insomnia, irritability, and obsessive work
habits speak volumes that he's not willing to on his own. I think he's been as terrified as I am,
we just haven't quite figured out how to effectively verbalize those fears enough to alleviate
them. I'm sure any shrink would have a field day with us, but I'm also pretty sure I could save
him the time. A) Our daughter has cancer. B) The fact is, we can lose her - and its horrifying.
The trick to mental survival is to lock A and B deep in the back of our psyche. Not so deep that
we forget to be obsessively clean and careful...but deep enough that we don't wreak havoc on
our daily lives.
Admittedly, the demons escaped the dark place these past several weeks. But I'm happy to
report, that we're doing a decent job of reining them in now. Avalon's ANC was 2067 this past
Thursday. She's bouncy, happy, and throwing temper tantrums that would make any 2 year old
proud. She's embracing the terrible twos in all their glory...and its wonderful! I know my
personal battles aren't over - but I survived this round, and look forward to the final victory bell.
I'm not sharing all of this for any sympathy, just for information. We all have our personal
demons. I know that each of you has your own battle grounds, in your own "mind" fields. By
welcoming you into our fight, I hope we help you find the strength to fight your own monsters.
Each of you, all of the love and support you share with us...all of it, is the arsenal we fight with.
When I think I'm at the very last, not-one-more-inch end of my rope...I always find a knot you've
tied for me to hang on to. I can't tell you how much we appreciate all of your support. I hope to
someday make you all proud with what we give back to the community. You are all our beacons
of hope and strength...and we adore you for it. Therefore, this explanation comes with a very
real, very heartfelt apology. I'm sorry I left you all in the dark for so long.
With that being said, this will be my last email, in the manner that you've become accustomed to.
I'm going to take a cue from a cancer friend, and only send you notifications that I've posted on
the web site. That way, I will no longer clog your in-box, or assault your private email. If you
wish to read an update, you will be able to click on the link, and read away. If you've had it up to
your eyeballs with my shenanigans...you can delete and move on. I never wanted to bother
anyone...just share our journey. Please let me know if you tire of receiving any emails. I
appreciate any time you have spent with us, and would not be offended if you are finished
walking with us. Conversely, if you hate the link thing, and wish for me to continue directly
sending you my letters, I would be thrilled to do so. Just let me know.
Please, please, PLEASE keep emailing us! I cherish every email, every word. If I have
periodically missed replying (especially this past month) I whole heartedly apologize. Your
letters are gold to us. I have printed and kept every one for Avalon. I look forward to the day
she can sit and read your beautiful thoughts and prayers on her behalf. She is blessed beyond
words. I know she'll go on to do great things...
You have all touched our hearts deeply...and we appreciate you.
Love to ALL of you,
Alicia, Nick, Aurora, Ambrosia, and Avalon
Our Journey:
Avalon's Army of Angels
| July 18, 2005 Alicia is still alive! |
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