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February 10 2013
Dearest Charlie,
I am sorry I haven’t written in a long
time. I haven’t written because there are few new themes to
write about. It has been 21 months now since your diagnosis and
we still remain in shock. There is no moving through stages of
acceptance with this one. Yet we are not fighting for your
survival either. This is what continues to hurt most. Living
without hope. Living with the finality of your terminal illness.
Yet you look perfectly well. You’re smart beyond your years and
growing every day. You are deeply loving and affectionate, often
you wake me up by kissing me on my lips and stroking my face
(and when you are being woken at 5am it makes all the difference
being woken in this way!).
And you are so very funny
- and
definitely cute. Amidst living with the heartache and heart
wrenching pain of your illness, I find myself smiling and
laughing with you all the time. When looking at you play and
chatter on, my heart pounds fast and loud with love.
A month ago
I did have hope, just for a few seconds. It felt blissfully
wonderful and painfully scary. I’ll try to explain.
In December you had an MRI. You
have double vision all the time now and every few days tell me
you have pain in your legs. So we thought the
scan would show that the tumor had grown. But that MRI showed
no growth.
When the doctor
put two comparison scans up on her computer, your Dad and I
looked at the two brain images on the screen. For a moment
we thought the tumor had grown. We saw a larger black oval
hole on the more recent scan, but quickly realized that this was
a ventricle. And it was larger because less pressure was pushing
on it. So did this mean the tumor had shrunk? It had not.
The
doctor reported no change in the overall tumor size.
Yet when the doctor said with a
smile that she had no explanation for your symptoms and that it appeared
that there was less pressure, I allowed myself to hope, and ask
"what if?".
What if this tumor doesn’t kill you? What if you go to
Kindergarten next year? That hope felt wonderfully soothing
and pleasantly unfamiliar. Then I felt panic and fear about you
living.
I know he tried, but I don’t think Daddy really
understood this range of emotions. You see, Charlie, if you live,
I have to change the way I am parenting you. I have to make sure
you brush your teeth twice a day, at least once a day every day
would be good. I have to give you clear consequences for your
actions - you have no idea what a ‘time-out’ is. And maybe you
should not be sleeping in our room anymore - it’s so unfair to
Esther and she complains about it all the time. And then I have
to change your preschool lesson plan too. I haven’t really
pushed your ABC’s or 123’s and your fine motor skills are not so
good and you find it difficult holding a pen and coloring-in and
I never really challenge you.
And your imagination is so
beautifully wild. We spend hours together deep in fantasy play.
So maybe it’s time to be more practical with the hours we spend
together. This morning since 6am you have been in full-on pirate
mode. Pirate outfit, making pirate maps, hiding pirate treasure,
making pirate lunch (in case others are wondering, pirate lunch
is normal food but all individually wrapped with paper towel and
purple ribbon!). And then there is the worry about the radiation
damage ……you are very short for your age, so did it harm your
physical or cognitive growth?
But what I have been teaching you is love.
Sometimes I like to think that if I just love you and hug you
enough maybe I can keep this tumor at bay. I have this silly
(but only somewhat silly) belief that a loving touch might keep
a person well.
And then there is the
more serious topic of your individualized preschool curriculum.
Slowly, gradually, but at every opportunity I am introducing you
to concepts of life and death. When leaves fall, when flowers
die, when that dead squirrel is in our path, I don’t walk away
but use these moments to prepare you and teach you. Not long ago
we watched Charlotte’s Web. As soon as you caught on that Wilbur
was going to be killed you began to cry. Big huge tears rolling
down your face. But I did not turn off the TV. You sat in my lap
and we talked about Wilbur and Charlotte and the different
reasons why their lives appear to be coming to an end.
Oh dearest Charlie, can I tell you a secret?
Please don’t tell Daddy because I know he’ll worry about me. I
know at some level that I do not have hope. I know all about
this bloody tumor, and how there really are no long-term
survivors.
I can
talk calmly about when you die to others. And it’s okay when I
say it. When someone else says it as a rigid fact - that you
will die soon, a wave of nausea comes over me. It feels like a
punch in the stomach of my soul. Oh Charlie, I don’t want to
give you up!
Yet I see signs. Oh Charlie, shit -- I see it
coming. I see that bloody tumor beginning to hurt you. And
again there is no one to tell, and no one to make it better for
you for us.
Love
Your Mum
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To Charlie -- while in hospital |
August
2011
Dearest Charlie
My little boy. I am so sorry. I am
so sorry I cannot protect you. We have started fighting
this battle together. But it is you my little soldier
that will have to fight this to the end.
I wish we did not know the
outcome. I wish we could not peek into the future. But
we have had a peek. We have heard the stories of the
other little soldiers. And it’s not good, my love.
It still does not seem real,
Charlie. A piece of me still does not really believe
what they have said. Surely you are different from those
other little soldiers? Those other little soldiers that
so bravely fought their bloody battles. Just like you
they did not know they were going into battle. Just like
you, they will have lost their battles before being
giving a fighting chance to win. This is the piece that
I find so utterly wrong -- so wrong that we know we have
lost the battle before the fight has really begun.
I wish I could protect you from
the pain to come. I wish you could have my life instead.
But it doesn’t seem to work like that. And now I must
stay here to protect and look after Esther and Daddy.
For soon they will need me even more.
But until that day I now must
prepare you. Prepare you for a long and painful battle
that you will surely lose.
The first step in the preparation
is to coat you in love. A thick armor of love. We are
trying to do that at every moment my love. We want this
to be the thickest, strongest, toughest, suit of armor
imaginable. This will be the most important weapon I can
give you. I watch you sleeping in the hospital bed
picking at your lips. Oh, little guy, you must be so
scared. It must be so confusing when the strangers come
throughout the day and night to
Oh little guy you must be
so scared.
It must be so confusing
when the strangers come throughout the day and night to
poke you in the arm, or chest or finger. We love you so
deeply. We are so very proud of you. You have shown such
strength.
You have fooled all
the doctors and nurses but you don’t fool us.
The way you shut
down, turn your eyes away and become lethargic
when they enter the
room.
They think you are
sleeping. Know that we love you with all our being. And
trust these strangers that do not know you.
The next step is to fill your days with joy –
utter, sweet, innocent, joy.
For these are the
good days Charlie. It’s windy, there are occasional
drops of rain, the sky has patches of darkness I hear
the thunder rolling in the distance but I still see the
sun and the storm has yet to hit. And so I know we must
enjoy these days. And I do my love. I utterly enjoy you.
You are funny and quirky, tender and loving and kind.
You know so much and you are so very little. Lean on me.
Hold my hand. Do not push me away. Do not be afraid. I
will always be right by your side holding your hand as
you fight this nasty beast.
Be strong my love.
The
third step is to get you physically strong. For sometime
soon your body will let you down. It will be scary my
love. And I don’t want you to see the fear in my eyes
when those days begin.
I imagine it will
happen slowly.
Your swallowing,
talking, walking, toileting and breathing will all
decline.
I treasure you with all my being.
I am here, standing at your side, holding your hand -
until the end.
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Your Mum |
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To Charlie -- worrying
signs |
September,
2011
Dear Charlie,
Last week was difficult for all of
us.
I saw you rub your neck and then
soon after while in a shop you had an intense tantrum.
Oh honey, this was not a normal three year old tantrum.
There was something wrong. And prior to your diagnosis
you had some huge tantrums. You were happy one moment
and the next so very angry; kicking, yelling, not
letting me comfort or distract you. After a while I
picked you up screaming and kicking and took you to the
car. And the tantrum continued and continued. Unable to
get you in the car seat I sat in the back of the car
with you. You would not let me put my arm around you but
lent your body into mine. Were you in pain? Did your
head hurt you? Is it the trauma that was triggered from
yesterday? Are you trying to push me away because you
know you are going to die? Oh little Cha - your fury and
rage was out of this world and I could not soothe you.
You worked up a sweat, I worked up a sweat. You cried, I
cried. This went on for an hour in the back of our car.
I find it so hard when I don’t know what your pain is
and I cannot soothe it away.
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Love Mum |
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October, 2011
Yes, it is true! You ARE getting cuter. We watch your language skills, your pretend play,
and how your personality grows every day. You are funny.
You are mischievous. You know how to wind up your
sister, and yet you are tender, perceptive and kind.

Your love for animals as well as people is deeply
moving.
I watched you play on the deck the other evening. You
found a dead bug, picked it up, then asked for help to
go down the steps into our garden. You looked like you
were on a mission but you did not explain. Then you took
my hand and showed me. I saw the dead bug on a large
leaf with a little leaf covering its body and some grass
placed neatly next to it,
“Look Mum - he is happy now. He asleep and warm and has
dinner too.”
These days we spend a lot of time just sitting and
cuddling.
At times we have a ritual - you ask me to curl
my tongue. You know I can’t do this, but you like to
watch me try. And so I stick out my tongue and I attempt
to curl it. You pretend you have not noticed that I
can’t curl my tongue, like you, daddy and Esther all
can. You cup my face with your hands, and while stroking
my hair you say,
“That’ right. You can do it just like us. Good girl Mum.
I love you.” (although the last bit sounds more like
“Goo’ gul, Mum. I wuv woo”).
I cuddle you tight, tickling you gently to let you know
I don’t fall for your compliment.
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Your Mum |
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October 30, 2011
Dearest Charlie,
Our sweet little boy. It’s October 30th today. What does
our life look like? It looks good…..mostly... sort of.
You are so very well. So very happy. Your tantrums are
improving. But it hurts. It hurts all the time. I cry
maybe two times a day. They are short acute bursts of
tears. The tears are often triggered when you and Esther
are at your cutest playing so sweetly together. Or when
I read an email from the DIPG group and read in detail
of the decline or death of a child.
The other day we dropped Esther off at school and
walking across the parking lot I saw a little girl
holding her daddy’s hand. I burst into tears when I saw
she had no hair. My tears caught me by surprise and
yanked me back to our reality. Despite wanting to
protect you from all and every pain, I want your hair to
fall out, I want you to vomit, I want you to take the
nastiest medicine imaginable. Because I want us to fight
this beast that lives in the shadows of your brain. But
we don’t fight. We just wait for him. Always watching
you, terrified for any sign that might mean the beast is
no longer hiding.
We
thought we saw him the other day. You cried at bedtime
holding the back of your head. It was a different type
of cry. A brave type of cry. You calmly told me that the
back of your head really hurt. Then you whimpered and
closed your eyes bravely. Daddy wanted to take you
straight to hospital to ease your pain. We waited. You
settled down and soon you were asleep. Just like any
three year old in any family.
But we are not like any family. We live in a new reality
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PS.
October 31, 2011

It’s Halloween today.
You are dressed up in your
dragon suit.
Can a
dragon look adorable? You roar and pretend to blow fire
on me. I pretend to cry out in pain from the fire burn.
You walk over to me and kiss me gently and stroke my
hair telling me you are a nice dragon now.
I smile. You proved the
point.
I am okay today. I haven’t read any emails of children
dying. I have seen no little children with bald heads.
Today you did not tantrum uncontrollably, leaving me
wondering if the beast had returned. You have not held
your head in pain.
I was okay today, until I remembered I hadn’t put
deodorant on.
So I went upstairs. You and Esther, my little shadows,
both followed. “Can I put some on too?” Esther smiled
sneakily. “When you grow up you’ll get stinky too, and
then you’ll definitely have to put some on!” I teased.
Then I heard a little voice, “What about me Mum?” You
looked at me, frowning seriously.
Do you know? Do you know that you will never be stinky?
I took a deep breath and swallowed my tears away, “Yes,
honey, you too” I lied.
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December 1st, 2011
Dear Charlie,
It’s been 7 months today since you were diagnosed with
terminal brain cancer. You’d think after 7 months of
having this knowledge it would be sinking in and we
would slowly ever so slowly be coming to terms with the
devastating knowledge that your life will be coming to
an end within months or maybe just maybe another year.
But it’s not sinking in, and I don’t get it, and it
hurts all the time. You fill our world with love and
meaning. Everyday you are growing into the most
delightful little human being- so kind and so very fun.
At night time or at random moments throughout the day
you put your little arms around me and say "Cuddle me
tight." And when I cuddle you, you say, "More tight Mum,
it needs to be more tight." And you smile so lovingly
and cheekily as you hug and hold onto to me tightly. You
are full of life. You don’t look sick. You don’t act
sick. We are not giving you any medicine to make you
better. I don’t understand this diagnosis or anything
about it.
It’s so very wrong and unfair. I want to cry
out and stamp my feet and say it’s unfair a thousand
times. But I am the grown up; the parent; and what good
would that do anyway. Never could I have imagined that
we would be faced with something like this- a cancer
with no hope.
Almost daily I still read about the other
children that are dying or have died and the mothers who
are then seized by the lonely darkness of grief. It’s
strange that I can peak into their worlds like this,
while knowing it will be our turn soon.
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To Charlie -- a New Year!
January 2nd, 2012
Dear Charlie,
New Years day was difficult. It hurts thinking about
what’s in store for us this year.
I feel weak just imagining. I want to curl up, put the
covers over my head and go to sleep. I don’t feel like
being strong anymore. Cracks are forming all over.
If we don’t tread carefully we are at risk of losing it
all. As we wait for your murderer to return, we try to
go on and live a normal life when nothing is normal
anymore. Life feels as if it’s about to spin into chaos
at any moment.
But then I feel a little bit of strength. Amidst the
chaos and growing dysfunction I actually feel lucky. You
are a gift Charlie. You are utter joy and love. I feel
lucky I am your mother; the chosen one to be by your
side on this journey. I feel honored.
For now, I don’t get comfort from religion. I have not
been taught it and it does not come naturally. But I get
comfort from your extraordinary love that you are giving
us all. This makes me strong.
I can’t keep you alive Charlie. I can’t keep this
monster from growing in your brain. But then I think
about what I can control. But I can mirror your love
right back to you. I can find calmness within if I
search, and I can mirror it back to you, and to Esther;
and to John.
I can hold you and tell you that it’s going to be okay.
I am so sorry I cannot stop the tumor from killing you
my son. But if I try, if I really try and don’t keep
score, I can stop it from destroying us all, our family,
my marriage and adding more wounds to your heart,
Esther.
It’s hard to find strength when we have been told that
there is nothing more we can do and we have lost the
battle before the fight has really begun.
But with my boxing gloves back on I realize the beast is
after us all and I feel strong again. I won’t let him
hurt my husband or my daughter. I will fight!
With all my love forever,
Your Mum
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Waiting for the MRI results at the NIH, Washington,
DC
January 25th 2012
Dear Charlie,
Daddy and I are sitting in the waiting room in the
hospital while you have just been sedated and are lying
in the MRI machine. You were simply incredible just now.
I could see the fear in your eyes. But then I saw the
way you held my gaze waiting for my reassurance, the way
you avoided eye contact with the other people in the
room, the way you did not cry when they poked your chest
with the needle. Most of all, I saw the way you smiled
at me and tickled me gently on my neck to make me laugh
before you went to sleep on the MRI bed.
Every day I fall more in love with you. This morning you
woke me up by kissing me gently on my lips. And last
night when you felt my body restlessly tossing around to
find a comfy spot, you stroked my hair and softly
whispered “Sleep mama, sleep”.
I think about the day you were born. How you came
quickly into this world. Less than an hour after
arriving at the hospital where you were born, I was
holding you close on my chest.
Then I think about the day you will die. Will it be
quick the way you came into this world or will it be a
slow decline? Will I scream and not let go of your dead
body or will I remain in silent shock and slip into a
catatonic state as they take you away?
Oh Charlie, sweet little Charlie. In the past three and
a half years I think I have become dependent on you.
Dependent on your smiles, your laughs, on your life
bringing meaning and simple joy to mine. I feel like
throwing my body down at your feet and pleading you not
to die.
Or maybe I should just put you in time out and tell you
how naughty you are for getting this nasty thing in your
brain.
Sometimes when you are fast asleep I whisper in your
ear. I tell you to fight and stay strong and be
confident in my love for you.
“Fight Charlie, fight”, I whisper.
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A visit to Ele’s Place
June, 2012
Dearest Charlie
It has been 14 months since your diagnosis. Now 4 years
old, you continue to thrive and have grown into a warm,
happy, affectionate and smart little guy. How very proud
we are of you. I love loving you; it's so fun and easy.
I love who I am when I am with you.

In loving you, I find myself. I discover endless
patience and I see beauty in the world. Getting you to
smile or giggle brings all the meaning I crave.
Yet I am still in shock, in shock that nobody can help
us, in shock that all we are doing is waiting for the
inevitable signs of decline. It is so lonely. Every
moment it hurts. I feel utter desperation. I want to run
down the streets and knock on all the doors.
Surely someone can help us? I'll do anything. Please,
someone, listen. There are no doctors now. No team of
professionals fighting with us.
Last week I left you with Grammy and Poppa and took
Esther and Daddy for an intake at Ele's Place. It is a
center for grieving children. I am constantly looking
for someone to help us, to support us through the
journey of losing you.
But it felt wrong not to include you in this. It was so
hard finding myself in the other chair, now the victim
in the patient’s chair.
A year or so ago, and a mile down the street from ELE'S
Place, I had sat in the professional's chair, asking the
questions, helping the family that needed help.
Sitting now in the other chair, it does not seem like my
life. It does not seem like my story. I’m used to
hearing other people’s stories, stopping and listening,
being moved and feeling sad – and then, quite simply,
moving on with my own inconsequential worries.
Now I no longer know who I am in this new narrative. I
don’t want to be the one that is pitied. I want to be,
perhaps need to be, the helper not the helpless. But I
feel helpless -- just waiting for the attack, for your
body to be seized, harmed and killed. Sometimes I feel
like I am the one dying.
My love for you runs deep into my soul.
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A visit to the doctor's office
July, 2012
We saw a doctor today, but not for you. It was a follow
up visit for Esther who had her tonsils and adenoids out
a year ago.
We were new patients and when the doctor came in the
room, I filled him in on Esther’s story and how she had
difficulty sleeping.
I also explained that she has terrible anxiety right now
because she worries about her brother’s illness. I
explained your diagnosis.
The doctor looked terribly confused as you sat in my
lap, giggling and turning pages of a monster book. He
shook his head and frowned trying to understand that
this happy healthy looking boy in my lap was actually
terminally ill.
He looked at me, looked at Esther, and looked at you,
perhaps still trying to understand this strange family
that just stepped into his office.
Then I saw the doctor’s eyes well up with tears. He
tried to blink them away, but that only made more tears
build up. He excused himself from the room, leaving us
alone.
Then I burst into tears. Esther burst into tears and
hid behind me. But you kept reading your book sitting on
my lap holding my hand.
I had to fix the situation. How confusing this must be
for Esther, seeing a doctor cry, seeing her mother cry.
I put the lid on my tears, and ,as calmly as I could, I
explained to Esther that everybody cries sometimes and
sometimes just talking about Charlie’s cancer makes
people feel sad.
You may not have minded, Charlie, but I am sorry Esther
had to see this. Or am I just sorry for myself? It might have
been unprofessional for that doctor to cry in front of
us. And yet it was also so powerful and validating. Our
abnormal and painful world has become our normal. Having
a professional outsider remind me that this is shit and
sad, and so far from normal, was, for me, deeply
therapeutic.
I understood, perhaps for the first time, how healing
comes when real emotion bares the soul and reveals our
common humanity.
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A hot summer's day |
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July, 2012
The temperature hit 103 today, a first time record for
Lansing.
You and Esther were fighting as I strapped you both in
the car. It was so terribly hot. It was the end of the
day.
Before that Esther had screamed about not wanting to
leave the house. Before that she had screamed because I
had gone upstairs to the toilet, but had forgotten to
tell her where I was going.
I snapped at both you kids. I was angry, swaddled in
self pity, as I reversed the car down the driveway with
a frown on my face.
Then I heard your little voice, “Be happy Mum.
Everything’s okay now. I love you.”
I turned around and looked at you in your car seat. You
had the sweetest smile, the kindest eyes, and my anger,
frustration and self pity just vanished.
How will I do all this without you Charlie?
It is difficult enough now, knowing of and living with
your death sentence. Yet that is nothing compared to
what lies ahead.
I don’t want to live in a world without you, Charlie.
Please don’t die Charlie!
(Is this denial
that's creeping in?)
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