Frederick The Mouse

Gigi read 280 books for school in February. 

She read to get to the goal of a cheeseburger, fries, ice cream lunch from a local hamburger joint. 

She was determined to get the top prize, and she did. 

Along with five other first graders. 

Last week all of first grade celebrated, yet again, reading books as their sole homework in February. 

As a top reader, Gigi got to pick a free book that came with a stuffed animal. 

She chose this fat mouse. 

His name is Frederick. 

He's the star of a book written by Leo Lionni in1967. 

Frederick is an artist at heart. 

He's not like the other mice in the burrow. 

Gigi has been sleeping with Frederick every night. 

If we are having rice for dinner, she sets a plate of rice out for Frederick. 

She and Frederick drink chocolate milk together in the morning. 

He has a special little plastic tea cup to drink from. 

Her imagination is bursting when it comes to this pudgy mouse with the droopy eyelids. 

And I smile openly when I see her talking with him. 

And then my mind wanders. 

Wanders to her sister. 

And I remember that Zoe never did things like this when she was seven. 

Zoe had an imaginary friend when she was two. 

Her name was Fajohnna. 

Pronounced fa-john-ah. 

Fajohnna would call her on the phone. 

She would come over for dinner. 

Zoe didn't have a real sister, so she made herself a playmate. 

When we moved to the farm she had a new friend. 

Haykin the deer. 

She claimed that one of the many deer that wandered into our yard was her pet deer Haykin. 

When she would see him (they all looked the same to her father and I, mind you) she would grab the dog's leash and run out the door.

All the while yelling "Haaaayyyykiiiiiin!"

Of course the deer would all run away. 

And she would slump her head down and slowly trod back into the house. 

Until the next time she saw him. 

Then the same scene would play itself out, head slump and all. 

Once she had a real playmate, her sister Gigi, she dropped Fajohnna and Haykin. 

But, quickly became discouraged when her new infant playmate wasn't actually playing with her. 

We said "Give your sister time. She doesn't understand what you want her to do yet. One day she will play with you."

And since Gigi learned to walk at 9 1/2 months, she was mobile and chasing her sister around sooner than her sister was probably prepared for. 

But there was joy. 

Always joy. 

When she was talking to Fajohnna on the phone. 

Calling for Haykin to come inside the house. 

Or hiding from her sister in the yard. 

She had joy. 

Then she had cancer. 

Her five year old balloon was rudely popped. 

Her rainbow of childhood joy became colorless. 

Her world became one of gray colors. 

Clumps of hair on her pillow after a restless night's sleep. 

A world of fevers and extreme lethargy. 

A world no child should be in. 

And her childhood was put on hold. 

She couldn't run after her deer friend anymore. 

She could barely walk. 

She couldn't talk to Fajohnna on the phone anymore because her mouth was full of sores from chemo. 

Her sister was still there, but she was a reminder to her. 

A reminder of what she couldn't do. 

Gigi would visit her sister when Zoe was hospitalized with a fever. 

Gigi would make videos on the iPad of herself dancing and singing, and you can see Zoe behind her in these videos. 

Laying in a hospital bed. 

Too tired to move. 

Miserable from fever. 

Her small body fighting off an infection. 

It's surreal to see these videos now. 

As a mom, I was in the hospital making sure my very sick daughter got the best care from the medical staff. 

But my other daughter, my healthy daughter, needed me as well. 

So there was a duality seen in these videos. 

Two sisters, in sickness and in health. 

Zoe's fine now. 

She's been given a clear bill of health. 

And she doesn't remember Gigi making the videos. 

Unless we pull them up and all giggle at Gigi's antics. 

And see Zoe miserable in the bed. 

And I'm sad for her. 

I'm sad that she missed a few years of her childhood. 

Childhood shouldn't be interrupted. 

It should be carefree. 

It should be joyful. 

It should be full of imagination. 

And Zoe's imagination was halted and I see that when I see Gigi feeding Frederick a piece of her donut. 

My mind wanders...back to a time that seems like just yesterday.

We can have a clean bill of health for our daughter, but cancer never really ever goes away. 

There are future tests for her growing body. 

The memories have yet to fade for us, her parents. 

They are absent or fuzzy for Zoe. 

She's, luckily, making new memories. 

And we don't forget that, either. 

Fight Like A Cat

I have always had a very strong personality. 

I was a stubborn and loud child. 

I now have a stubborn and loud child. 

I don't like it when people say things to mothers such as "I hope you have a daughter who turns out just like you."

It's never meant in a caring, loving way. 

It's always a dig. 

It's always meant to hurt. 

I'm sure it's been said to me. 

I'm opinionated. 

I'm not afraid to voice that opinion. 

And yes, I have a daughter who is just like me. 

One of my daughters looks like me, but has her father's quiet demeanor. 

The other daughter looks like...I don't know who she looks like...but she acts like I do. 

And that's just fine with me. 

My stubborn ways and fierce voice have helped our family get through some harrowing days. 

I'm in no way perfect. 

Far from it. 

I can sometimes think too quickly and then spew garbage from my mouth.  

I am sometimes too honest. 

You know, those things you think about later and say to yourself "wow, I sure shouldn't have said THAT!"

But, I see these flaws and I'm working on them. 

When Zoe was diagnosed with cancer, I didn't cry. 

I got mad. 

Wildcat mad. 

How dare this interrupt my daughter's young life?

She was brand new. 

She had only been on the earth for five years. 

She had just started full day school two weeks prior. 

I was determined, from the first minute of knowing she had leukemia, that she would not go down. 

And that I would go through this with her as if my healthy body could somehow find its way into her body. 

My energy would be her energy. 

My positivity would be her positivity. 

We did let her cry. 

We did let her ask "why is this happening to me?"

But we didn't let her stay there too long. 

Despair doesn't heal. 

Light heals. 

Love heals. 

I was always present during procedures. 

I would help hold her arms or legs when she would get a spinal tap. 

I wasn't going to let a nurse speak quietly into her ear as the doctor inserted a needle into her spine. 

She would hear my voice. 

I would penetrate through the sedation drugs. 

I firmly believed that my voice would override the pain or discomfort. 

If she couldn't eat before a sedation, I wouldn't eat. 

It was only when she was wheeled off to surgery or the spinal tap was completed, would I then take a bite of an apple. 

When she was fit for her radiation face mask, her father and I stood behind a wall in the room she was in. 

The radiation face mask fitting was, by and large, the most terrifying thing that she went through. 

As soon as the fitting was over I swooped from behind the wall, telling her we would go get some Dunkin Donuts in the hospital lobby. 

I was yearning for control. 

Needing to feel control in a situation that, in all reality, I had no control over anything that was happening at all. 

Either the medicine would work. 

Or it wouldn't. 

Either she would live. 

Or the cancer in her blood would live. 

Killing her in the process. 

Her sister was only two. 

She was only five. 

This isn't what was supposed to happen. 

This wasn't the storyline I had signed up for. 

My husband and I had decided to have children. 

They were planned. 

How dare cancer try to take away a member of our tribe. 

I'm not a tiger mother. 

I'm more of a serval mother. 

And this cat wasn't going to let her kitten go down without a loud, opinionated, stubborn fight. 

My daughter's school principal told me today that a friend's daughter was just diagnosed with cancer. 

She's only 12 years old. 

She asked me for some advice. 

I told her to tell her friend to ask many questions, to the point that she may think she's asking too many questions. 

To become stubbornly loud. 

Because her daughter can't fight this kind of fight herself. 

She needs a serval mother. 

Of Thanksgivings Past

I made two pies and they have both been eaten. 

The turkey was moist and the cranberries were heavenly. 

Chad does such a good job on both. 

Our Thanksgiving dinner was superb this year. 

My mom made her famous potato rolls. 

My niece made her famous cheese ball. 

Before the meal Gigi made us go, one by one, around the table to say what we were thankful for. 

It's good to have the young around at holidays because they seem to keep the meaning of the day in check.

People were thankful for pie, stuffing, good health. 

Zoe was the last to have her say. 

And she's thankful today for her family. 

Those that sat around the table with her. 

Her dining room table in her home. 

And my mind went back. 

Back in time. 

To Thanksgiving 5 years ago. 

When we weren't at home. 

It was a routine procedure she was to have for her chemotherapy treatments. 

She was 5 years old and had to have two injections in her thighs the day before Thanksgiving. 

Our friends were driving down to visit with us from Northern Illinois. 

They would continue on after visiting, traveling farther south the next day for turkey. 

She had had this procedure twice already. 

No biggie. 

A drug called PEG-Asparaginase would be injected into the muscles of her thighs. 

One nurse on the left thigh. 

One nurse on the right thigh. 

It took only seconds. 

It hurt like a bitch.

And then...

And then she said "my throat feels funny."

I yelled to the nurses standing just outside the door "HER THROAT FEELS FUNNY!"

An allergic reaction. 

She immediately started vomiting. 

The two nurses started giving her more injections. 

To counter-act the reaction. 

And then the hives appeared. 

All over her body. 

Then the hives disappeared. 

But not for long. 

Then they only covered her face. 

Then gone. 

Then her feet. 

Then gone. 

Then her hands and arms. 

Then gone. 

Over and over and over this happened. 

For the next three days, in the pediatric ICU she sat. 

Getting enough Benadryl pumped into her little 48 pound body to knock out a 300 pound man. 

And the hives wouldn't relent. 

And she wanted to go home. 

And she wanted her sister. 

And she wanted to see her friends who hadn't been able to visit, but instead kept driving to their destination. 

And the doctors had never seen this reaction before. 

And it was Thanksgiving. 

The doctors on call for the holiday weren't letting her eat anything. 

For fear that the vomiting would come back and she would aspirate. 

The cafeteria was serving Thanksgiving dinner for those stuck at the hospital for the holidays. 

Hospitals are open every day of the year. 

Never opting to close for a holiday because sickness takes zero days off. 

So, my husband went down to the basement. 

Got a plate of turkey, stuffing, potatoes, and a roll. 

Ate it by himself. 

Sitting alone in a room full of strangers. 

Others doing the same as he was. 

Everyone was there for a different reason.

A sick parent. 

A sick spouse. 

A sick brother or sister.

A sick child. 

When he returned to her ICU room, I went down. 

Down to the basement to get my styrofoam plate filled with American cultural favorites. 

A faint smile and a Happy Thanksgiving to those serving me. 

I headed down the white hallway to the elevator. 

It's a right, down a ramp, and then a left to the elevator that takes you from the general hospital area and cafeteria to the children's hospital. 

I got on and pressed 5 on the buttons. 

I was alone. 

Alone in the hospital elevator with my plate of food in one hand. 

The clear plastic lid was steamed up. 

I had a plastic fork and knife in my other hand that was holding a piece of pumpkin pie. 

Drinks came from the vending machine down the hall. 

Zoe was asleep when I entered her room. 

But soon awoke after smelling my food.

She hadn't eaten in a day and a half. 

"No food" said the doctor on call. 

"Whatever" said the mom feeding her daughter hospital turkey on Thanksgiving. 

Because that's what family does. 

They take care of one another. 

Each Thanksgiving I am now grateful for my daughters. 

That they are both at the table with us. 

Because that one Thanksgiving, when we were separated and we had to eat next to an iv pole, we became who we are today. 

Stronger. 

And forever thankful. 

 

Not Loud Enough

Childhood cancer. 

Two hundred plus children die daily from cancer in this world. 

No one wants to think about it. 

You don't want to talk about it unless you've been in it. 

Deep in the trenches of a possible death sentence for your child. 

I've been in it and it's damn hard to talk about it. 

Children are dying and parents are holding candlelight vigils. 

They sit at home and write letters. 

Letters to the president. 

Letters to lawmakers. 

They put gold light bulbs in their front porch fixtures. 

Make Facebook pages. 

Create t-shirts, shave their heads, sell lemonade and cookies. 

They are afraid to make too much noise. 

Is it out of respect for the young and innocent?

I think it's because deep down we are all mourning. 

When gay men were dying from AIDS no one listened. 

No one wanted to talk about sex and death. 

It was kept in the closet. 

There was shame. 

But seeing everyone around you die a slow and excruciating death, something had to be done. 

So letters were written. 

Phone calls were placed. 

No one listened. 

So they yelled. 

And marched. 

And made a lot of noise. 

They threw their dead friends' ashes on to the White House lawn. 

They made a point to be heard loudly. 

And it happened. 

They were heard. 

And they got funding. 

And the disease (in the U.S.) has decreased and treatments have become revolutionary. 

And people are surviving. 

Because of noise. 

I'm an advocate for kids with cancer. 

I have tried to make some noise.  

I'm not loud enough, though. 

People are very eager to tell me what I'm doing wrong. 

From behind a computer screen. 

Never to my face. 

It's easier to sit at your laptop and nay-say the efforts of someone else.  

But I hope they are simultaneously asking themselves "what am I doing for the cause?"

It's hard to be dedicated to one singular cause in the 21st century. 

The causes are too many to count. 

Diseases of the brain. 

Animal abuse. 

Poverty. 

Gun violence. 

Orphans in Europe. 

Heart disease. 

There are so many ways to advocate for something. 

And our brains, news feeds, television screens are inundated. 

And when there's that much information thrown at us. 

No one listens. 

Why should people care about kids who get sick?

Your kid is healthy. 

It's easier to look away. 

Scrool past on your newsfeed. 

Change the tv channel. 

One day my child didn't have cancer. 

And the next day she did. 

I'm getting tired. 

Tired of trying to do good and getting nowhere. 

Tired of asking for help and getting no response. 

Tired of reading stories about children dying. 

I can't begin to fathom what a parent must feel like in a country where there isn't available treatment for their sick child. 

In war ravaged countries. 

People fleeing for their lives. 

There are children in these situations with cancer. 

Childhood cancer has yet to yell loud enough. 

Someone needs to go to the top of the mountain and scream. 

But they can't do it alone. 

Zoe The Survivor

Monday is a big deal for us.  

It's the five year anniversary of Zoe's cancer diagnosis. 

September 7th. 

The day that, I doubt, will ever be erased from my mind. 

There are many monumental events during a person's lifetime that seem to be flash frozen into memory. 

A wedding day celebration of love. 

The birth of our children. 

And, for me, the day I was told my five year old had cancer. 

I remember the phone conversation with our pediatrician's office manager. 

The doctor wanted me to go get Zoe from school and bring her right in to see him. 

Just because I said she was tired and had large bruises that weren't going away. 

I remember what Zoe was wearing. 

A hot-pink tiered skirt that stopped at the top of her knees. 

I remember that I called my cousin from my car and said "maybe it's leukemia."

I remember the anger that took over me when, through his own tears, our pediatrician said the lab results came back (that had only been drawn an hour before) showing leukemia. 

I remember my husband crying as Zoe sat on his lap. 

I remember Zoe looking from her father to her doctor, two strong protective men in tears, and having no idea what they were crying about. 

I took lots of notes. 

Without those notes I wouldn't have remembered anything at all. 

Every word that came out of Zoe's new doctor's mouth was written down. 

A old friend from high school recommended the note taking. 

Her son had gone through treatment for a brain tumor. 

She was already a momcologist. 

I was just starting my introduction to the field. 

We were handed tons of forms to read and sign. 

Forms for surgery. 

Form authorizing chemotherapy. 

Form with pages pertaining only to side effects. 

I told Chad not to read some of those. 

He still hasn't. 

One of us knowing potential horrific outcomes was enough. 

We both did read over and then sign NO to a very specific form. 

It was for an experimental drug study that Zoe could have as part of her treatment. 

But the side effect of "temporary blindness" dissuaded us. 

I have learned much in the five years that I've watched my first child overcome sickness. 

I've learned to laugh more. 

Because crying won't help anyone. 

I've learned to sing loudly with my daughter. 

Because joy is more powerful than fear. 

And I've learned to be her voice when she had none.  

I've learned how to be courageous and adventurous. 

I've had to teach her those two things as well. 

I've had to teach my child that even though she felt horrible and looked different than her peers, that everything was for her benefit. 

That mom and dad weren't hurting her. 

We were trying to save her. 

No parent should have to tell their child "you MUST take these pills or you will die."

I've said those words to my five year old when she screamed at me that she wasn't going to do this anymore. 

Five years on Monday. 

It seems like a lifetime ago that my young, vibrant, precocious child was told to lay in bed for her own good. 

We won't celebrate with any ceremony on Monday. 

We will carry on as if it were any other Monday. 

Zoe doesn't like to hear about these dates on the calendar. 

The day of her diagnosis. 

The day of her last chemo treatment. 

She doesn't have a lot of memories from her sick days. 

Which we are thankful for. 

But, she has enough in her head to make her cry if we discuss it. 

No matter what I feel about the situation, it didn't happen to me. 

It all happened to her. 

And if she doesn't want to go there, we don't. 

She wants to be normal. 

She wishes she didn't have this past. 

She's one tough kid. 

As are all kids who face a cancer diagnosis. 

We know being a survivor is worthy of a gold medal as well as having a sign flashing over your head stating "bad ass coming through!"

Once I was handed a form that stated: with your signature you authorize your minor child to be pumped full of poison so that we may begin to save her life. 

And life was never the same. 

None of us were the same. 

"New" Hair Goes To The Salon

My daughter got a haircut today. 

Which is just a normal thing for most people. 

But for us, it's a momentous occasion. 

It's her second haircut and she's 10 years old. 

And it's the first haircut with her "new" hair.

After getting her first haircut at the age of four we never thought that it would be the only haircut that her original hair would have. 

Her golden brown hair. 

It would be gone a year later. 

She would wake up with it all over her pillow after a night of sleeping. 

Brushing it was out of the question. 

It would make her cry. 

It would make me cry for her. 

I collected some of it as it fell out. 

It's tucked away into an old cigar box on a bookcase in the kitchen. 

I call it her "first" hair. 

Chemo caused her hair to fall out three different times. 

Her oncologist said having hair loss twice during 2 years of chemo wasn't rare. 

But three times. 

Doesn't happen too much. 

But, our girl was special so I guess her head needed that "3rd times the charm"

effect. 

She hasn't wanted a haircut since it's grown back. 

Her doctor wasn't sure if it would grow past her shoulders. 

Sometimes it just stops there if you've had low dose cranial radiation. 

But, her "new" hair defied those odds and has grown to what her "first" hair's length was. 

Her "new" hair is also darker than her "first" hair. 

When your hair falls out from chemotherapy it has the chance of growing in a different color. 

It may be curly when it had been straight before. 

All Zoe hoped for was NOT to have blonde hair like her sister. 

She ended up having "new" hair that was darker in color with natural golden highlights. 

Today we had an appointment at my hair salon. 

Another mom from school cuts my hair at a chic little salon downtown. 

I got my hair cut and Zoe was scheduled for a trim. 

She didn't want layers. 

Nothing too drastic. 

Just an inch off of the ends. 

And blue. 

She wanted it dyed blue. 

So, at 10 am she got her "new" hair cut and colored for the first time. 

And she was beaming. 

And inside I was doing cartwheels for her. 

Going Gold

We go GOLD in September at our house. 

To honor children and to bring awareness for the cause that tore into our lives 5 years ago. 

It will be 5 years on September 7th that our daughter was diagnosed with childhood cancer, leukemia. 

Childhood leukemia is different than adult onset leukemia. 

Childhood leukemia is acute. 

It happens out of nowhere and can kill quickly. 

If our daughter wasn't diagnosed in the time frame that she was, she would have probably died within two or three more weeks. 

Childhood cancers are the #1 disease killers of children in the U.S.  

Childhood cancers aren't one disease. 

They are many. 

Brain tumors. 

Leukemias. 

Bone cancers. 

Eye cancers. 

Soft tissue cancers. 

The list goes on unfortunately. 

And childhood cancers get the least amount of federal funding. 

Because it's rare. 

Pfft. 

Tell that to the thousands of families affected each year. 

The American Cancer Society likes to show pictures of bald children in their ads, but they only give 1 cent for every $1 donated to childhood cancer research. 

Their CEO makes more than they help kids with cancer. 

Children who die from cancer can lose 70 or more years of life. 

Never getting to see their futures. 

They haven't contributed to their disease by smoking or poor lifestyle choices. 

They are just unlucky. 

And they deserve better research. 

Childhood cancers have only had two new drugs made specifically for their growing bodies in the last 30 years. 

Instead, they are given watered down versions of adult drugs. 

So, we help spread awareness. 

With our gold ribbons. 

With our license plate campaign in Illinois.

We donate to research that matters.  

To help fight these diseases. 

Because we know other children aren't as lucky as our child has been. 

Knowing How To Fly

My kids and I traveled to Grand Rapids, Michigan today with our friend Lynne. 

We are staying with her and her husband Dan this week at Dan's sister's lake house. 

Grand Rapids was about an hour away and so the girls all traveled to John Ball Zoo this morning. 

The guys headed to Detroit to see the Tigers play baseball. 

It was a really great zoo and *(history lesson here)* is named for John Ball who was a lawyer, educator, and agriculturist who traveled with an expedition to the west coast in 1832 before the Oregon Trail came became a popular route. He donated land in Grand Rapids where he settled later in life and this land now holds the John Ball Zoo. 

The zoo was full of trees and was one of the most relaxing and entertaining zoos I've ever been to. 

Tigers, lions, camels, otters, a maned wolf (so cool!), and chimps. 

This chimp looks very much like some of my relatives. 

It's because of chimpanzees like this that I am certain, beyond any doubt, we are creatures of evolution. 

My girls did a high ropes course.

High ropes course?

What is that?

I'll explain...children and adults are fit into harnesses and attached to a cable system. 

Then they traverse high in the sky through a rope bridge, steep staircase, high wire labyrinth. 

Gigi had a bit of fear, but certainly wasn't going to let her sister do it without her. 

Zoe also did a zip line that shuttled her high amongst the treetops and over zoo visitor heads. 

Gigi doesn't weigh enough to do a zip line course yet. 

Sad. 

Zoe shows no fear in doing these things. 

I think it's because she's been through hell and back with her cancer treatments. 

Zip lining isn't scary at all to her. 

Blood draws and cranial radiation scare her more. 

Knowing she isn't scared leads me to not being scared for her. 

There's always the possibility that a harness will break or that a rope won't hold. 

But I can't go through life being outwordly afraid of these things.  

That's not fair to her. 

So I pay the money and sign the forms. 

I shut my mouth and keep my fears inside my head. 

I do push them back, though. 

I watch her zip though the trees like a bird. 

Knowing she's free up there. 

She's not sick anymore. 

She's spreading those wings...

The Found Art Of Play

I'm a stay at home mom. 

I've been in my current position for a decade. 

We lived in Chicago when Zoe was born and child care expenses were out of our budget.  

It made sense for me to stay home.  

I think that my decision to stay home was, in a way, preparing me for what would happen to Zoe later on. 

Zoe got sick at age 5. 

She missed that crucial time where her imagination was really taking off. 

As her mother, I had worked hard at showcasing to her the interests of art. 

Music. 

Dance. 

But, when she got sick, it all got put on hold. 

Instead of sitting in her room playing with stuffed animals, she was always sleeping.

She had just enough energy that first year to watch movies.  

And to draw. 

And as her parents, we didn't force her to do anything she didn't want to do. 

She was a whopping 37 pounds when she was 6 1/2 years old. 

The chemo sucked her life away at times. 

Being a sick child in a children's hospital didn't mean she was riding her IV pole down the hallway laughing as she went. 

She didn't paint her bald head. 

Her head was never completely bald. 

She wouldn't allow us to touch her hair. 

Whatever was left she wouldn't let us shave. 

Her hair was all she could control. 

She kept the straggly strands that wouldn't fall out. 

Her hair fell out and grew back three times. 

When her port was accessed she didn't like to move around too much. 

She certainly wouldn't hitch a ride on her IV pole anywhere. 

She would walk very slowly. 

With her shoulders hunched over. 

Looking like she was 95 years old. 

She was always afraid the needle would come out. 

Like it did once at home when she had a violent vomiting episode. 

Her life was filled with needles sticking out of her chest instead of playing. 

Her sister is currently at that age that Zoe missed. 

Gigi is 6 1/2 and almost 55 pounds. 

Gigi plays with her dolls.

With her stuffed animals. 

With her 2,216 My Little Pony figurines. 

She has a lot of figurines. 

Her imagination is out of control. 

Which is where it should be at this age. 

I understand that my girls are individuals. 

That they play differently. 

That they think with two entirely different melons. 

But kids do have days upon days of imaginary play between the ages of 5 and 7 

And now that Zoe isn't sick anymore, the imaginary play has emerged. 

Zoe is 10 1/2 now. 

She's wearing deodorant. 

And watching YouTube videos about cats singing and people tripping over sidewalks. 

Other girls her age seem to be interested in boys and who they are going to call next on their iPhone. 

But not Zoe. 

She's busy playing with her sister.

Catching up on lost time. 

Just two girls and their figurines. 

Locked in their room letting their imaginations explode. 

With mom always at home

I'm just in the other room...

The Past At Camp

It's happened again. 

Every summer I am left alone. 

For a week. 

All by myself. 

Well, until Chad pedals home from his long day at work where he's been watching YouTube videos with his boss and hiring some people for the Fall semester during the University's summer break. 

So, my week of solitude has begun. 

Because the girls are at summer camp. 

On the way to camp yesterday we were tallying up the years and this is Zoe's fifth year at camp. 

FIFTH YEAR?!?!

How is this possible?!

Well, let's see. 

She's ten now. 

She got cancer at age five. 

She's at cancer camp and you can go to cancer camp at age six (unless you're her sister, but I'll tell THAT story in a minute.)  

And yep. 

She's right. 

It's her fifth year at summer camp. 

Excuse me while I wipe my wet eyes. 

Okay. 

I'm fine now. 

As we dropped the girls off I saw our daughter's past standing in the line of kids to be checked in. 

A young girl who was quite obviously in the throes of her treatment. 

She was horribly thin. 

With very pale skin. 

She had dark eye circles that peered out from under her hat's bill that contained a head that no longer had hair. 

It was my daughter in 2011. 

And in 2012. 

Now Zoe looks normal. 

She has long hair. 

And a full face. 

Full of freckles and smiles. 

And the girls in her cabin are all healthy now. 

Their days of chemo and steroids and zero energy are far behind them. 

In a place that hides within their memories because now they want to be like everyone else their age. 

Zoe's sister Gigi goes to camp with her. 

Siblings of children with cancer are greatly affected by the traumas of cancer. 

You are required to be six years old to go to camp. 

But Gigi went last year. 

When she was five. 

Because...she's Gigi. 

Once you meet her you'll never forget her. 

And she's been going to her sister's oncologist visits since she was 22 months old. 

And she's the only kid at camp that gets chocolate milk. 

With every meal. 

I walked, really ran to keep up, with Zoe to her cabin. 

Helped her get her bed put together. 

Then walked across the camp to the cabin her sister was staying in. 

Gigi had taken dad with her to help her set up her bed in her cabin. 

Once Chad and I completed bed making duty, we switched cabins. 

He walked to Zoe's cabin to tell her goodbye and she quickly gave him a hug and kiss then ran away to be with her friends. 

So he returned to Gigi's cabin. 

Where I was. 

He came in as I was telling Gigi's counselors about her custom-made ear plugs that she needs inserted before she can go swimming. 

She gets swimmers ear without them. 

And that the nurses had these expensive ear plugs with them. 

At cancer camp, there are lots of nurses and oncologists wearing t-shirts and shorts instead of ties and scrub tops. 

That's when I saw her. 

The little girl who was my daughter's past. 

She was in Gigi's cabin. 

Her bed was made up. 

Her stuffed animals were situated on her bed for the week. 

And her parents were trying their hardest to leave. 

But it wasn't happening.

I've been there. 

I've had to leave my daughter in someone else's hands for a week while she was on chemotherapy. 

It's about as hard as walking away from your child as she's being wheeled into surgery. 

Chad saw the girl's father wiping the tears away from his eyes before his sweet daughter could see them. 

Something that he himself has done. 

In that same cabin. 

And I think it's important for us to see that. 

To see the effects of cancer and chemo on a child. 

Our past. 

It's a reminder to us to chill out. 

To not take things and situations so seriously. 

To remember that life is sweet and that we can't take our children for granted. 

I'll know this girl's name when we pick up the kids up on Friday. 

Gigi will have, no doubt, befriended her right away and I'll hear all about the fabulous things they did this week. 

And Gigi won't hesitate to treat this new friend with love and respect.

Because she, and the other kids at camp, have seen and lived what she is experiencing right now. 

And they'll give her hope. 

And memories to sustain her through it all...

These Days

I haven't written a post in a while that is simply a "what's been going on" post, so here it goes...

My kids got out of school last week. 

And we have three extra weeks added onto our summer in August because new schools are being built in our district. 

They don't go back until September 8th. 

As I write this, they are in the other room pretending they are in music class. 

And they are screech singing. 

And it's raining outside. 

Help me. 

Please. 

We saw the movie Tomorrowland yesterday. 

Very good film with action, explosions, and a message worth thinking about. 

That we, people of this planet earth, need to cut the crap and fix what has happened to our home. 

A few days before that, Chad and I watched the movie Still Alice at home. 

Wow. 

Scary. 

Early Onset Alzheimer's. 

An amazing performance and a film that made us both hope that that won't become our future. 

Because it was so scary. 

Scarier than the message seen in Tomorrowland. 

Even with the kids being out of school already and three extra weeks of summer break, when I look at the calendar on the wall it's so full. 

And I didn't really sign the girls up for anything.

They have a 3 hour camp on Thursdays learning about Lewis and Clark.  

Swim lessons on Monday and Wednesday mornings. 

They have sleepaway camp in July for a week. 

We need to get to Memphis in June. 

We are going to Michigan for a week in August. 

Our friends from Vermont are coming for a few days in July. 

We have a family wedding in August that the girls are in. 

I'm exhausted already. 

But today, I have absolutely nothing to do. 

We had a sick chicken. 

Took her to the vet and she's all better. 

We had a goat with a bloody horn a few weeks before that. 

Took her to the vet and she's all better. 

Here's hoping everyone else in the barn stays healthy. 

Speaking of health, Zoe had a blood draw last week. 

She has horrible veins.

They are deep in her arms and they hide as soon as she enters the hospital. 

It did not go well for her. 

Our nurse friends had to call in Dan. 

I don't know Dan, but we all certainly put the pressure on him to get blood from the girl who doesn't like to give up her blood. 

Dan the phlebotomist. 

He got the job done, but not before suggesting taking it from the big vein in Zoe's hand and her yelling NO!

She had that done once and vowed to never let anyone touch her hand veins EVER again!

Her blood, her veins, her choice I say. 

She (and her sister) raided the toy closet before we left. 

People donate tons of stuff to children's hospitals. 

Sometimes it's the only way people know how to help sick kids. 

Toys. 

After the hospital visit we headed to lunch.

A new place for us. 

Obed and Issac's Microbrewery and Eatery. 

Such a long name. 

A restaurant in a big house right in downtown Springfield, Illinois.  

A block away from Abraham Lincoln's house. 

We had great service and great food and will definitely eat there again. 

Since Abe's house was right across the street, we headed over for tickets to see inside. 

The girls have been inside twice before, but between their young ages and Zoe's chemo brain, they both couldn't remember taking the tour.  

Abraham Lincoln's home and neighborhood are the only National Park within the state of Illinois. 

It's free to get in, but you need a timed ticket and can only get in while on a tour given by a National Park Park Ranger. 

They even wear those cool wide-brimmed hats you see Rangers wearing at Yellowstone and those other parks with lots of trees and wolves and giant waterfalls. 

Each time my kids go into this house, even the times they don't remember, they giggle about the chamber pots under the beds. 

We Are Human

I was watching a show on television last week and they had an interview with the author Judy Blume. 

She's written a new adult fiction novel. 

But it's based somewhat on some factual airplane accidents that occurred in the neighborhood that she grew up in as a child. 

The neighborhood that inspired her to write teen novels involving menstrual cycles and letting boys touch your boobs. 

But she said two sentences at the very end of her interview that really struck me. 

Struck me so much that I searched for a pen to write them down. 

Two sentences that are basic yet so powerful. 

Two sentences that will mean much to anyone who hears them, I think. 

"There's joy in life after terrible things happen. 

We are human and we must go on."

I think of parents who have lost a child. 

Or children. 

A child who has lost a parent. 

Or parents. 

Great tragedy, I believe, really occurs when someone you love has died.  

Especially before you or anyone else believes that that person has lived enough life. 

Tragedy also comes with illness. 

From the trauma of a natural or man-made disaster. 

From horrific accidents or decisions that lead to despair. 

Homelessness. 

Drug addiction. 

Cancer in a child. 

Tornados and terrorist bombings. 

Humans are resilient. 

Humans must move forward or they will cease existing in this world. 

And it may take time to pull your bootstraps back up. 

To get your sense of self back. 

To learn how to breathe again. 

But we do. 

We all do. 

Because there is joy in the world after terrible things happen. 

Babies are born. 

The flowers bloom with each spring season. 

The wind blows a cool breeze on your face on a hot day. 

You learn to appreciate the small things. 

The regular moments in life. 

You laugh at a movie. 

You hug a horse. 

You get a puppy. 

And life goes on...

The Fear Remains

My ten year old fell asleep in a living room chair yesterday at 5:00. 

Which shouldn't be strange. 

But it was. 

She never does that. 

And when I told my husband, who was fixing our dinner in the kitchen, he stopped what he was doing and stared right into my eyes. 

Because he also knew how odd that was. 

And we try to tell ourselves that it's nothing. 

We say it out loud to one another. 

"Oh, it's probably just a virus.  She has been sick recently. Coughing. Low fever. It's nothing."

But our fear lives very close to the surface. 

Cancer always lives very close to your heart and it takes over your rational thinking. 

And we are very rational thinkers. 

Except when it comes to Zoe's health. 

We may smile and go on with our day, but it's there.

What if the cancer has come back?

She was very tired prior to her diagnosis. 

Headaches take me there as well. 

I've calmed down with the bruises as she doesn't get them as much. 

But if I see one I ask "how long has that been there?  Where did it come from?"

And Zoe takes it all in stride. 

Answering her parents questions with calmness as if it's her job to reassure us. 

It's been 4 1/2 years. 

4 1/2 years since we were told the horrific words *your daughter has leukemia. Blood cancer. 

It seems like an eternity since those words were said. 

And like yesterday.

And I'm sure she just has a virus. 

Instead of leukemia. 

Again. 

But our fear is present.

It's always hovering no matter how much I shoo it away. 

And no one can tell us to get over it. 

To not let the fear in. 

Because we never invited it in in the first place. 

Cancer brings fear as that proverbial gift that keeps on giving. 

So we watch her. 

Like a hawk. 

Looking at her every move out of the corner of our eyes. 

Not letting on that we are observing everything that she does. 

Because she's fine. 

Just fine.

We have to tell ourselves that. 

Tell our hearts that all is fine...

The Girl Was On Fire

Today we had a birthday party for Zoe. 

She turned ten years old four days ago.

Cousins, aunts, uncles, and grandparents came. 

And her hair caught on fire. 

The girl's hair caught on fire as she bent over the cake to blow out her ten candles. 

And this what quite joyous for me. 

As I told her when it happened "that's awesome that your hair caught on fire!  Well, not that your hair caught on fire, but awesome in that your HAIR caught on fire!"

Because her hair hasn't been this long since she turned five. 

The birthday before she got cancer. 

And now her hair is long enough to catch itself in the flames celebrating another year of life. 

The flames OF life. 

And the girl was on fire. 

*a big thanks to her great uncle Dave for extinguishing her hair with his hands. 

Hope And Dreams At Age Ten

When you have a baby you have big dreams for that child. 

Hopes and dreams take over your life. 

President. 

CEO. 

Feeder of starving children. 

Genius doctor. 

Juilliard musician.

You never think that those dreams will be sidelined by disease. 

When Zoe was born ten years ago today I had those dreams. 

And I still have those dreams. 

Because disease did not steal her from us. 

It made her strong. 

She fought back. 

Determined to live this life she was given. 

And we remind her not to take it for granted. 

Three years ago today she said goodbye to her friend Jake. 

Who also had cancer. 

On her birthday she was at the funeral for her friend who fought just as hard as she fought. 

But his disease was too much. 

And we will forever curse brain cancer for taking him from all of us. 

And she will continue to live her life for him. 

Dreams continue in her heart and actions. 

This morning I hugged her and whispered in her ear "thanks for staying with us."

Tears came to her eyes because she knows how things could have been.

And she knows what she needs to do. 

Hope and dreams. 

They keep us going...

A Deflating Heart

I never knew how hard it would be. 

I never knew that there were others in my camp who wanted my tent to go up in flames. 

They aren't in my face, though. 

They have stayed hidden away. 

And that's why this isn't working. 

When Zoe was diagnosed with cancer, I thought that nothing could ever be harder. 

But in reality, it was easy. 

Because we didn't have any other options put before us. 

We couldn't say "nah, we don't want to do this."

We had to send her into surgery.

We had to stand in another room while her brain was radiated. 

She had to endure the pain and fear and the unknowingness of it all. 

Because it would give her life. 

Without the treatments, death would have been the final outcome. 

With her favorable results, I had a thought. 

Why not get a license plate in Illinois to help the doctors?

The doctors who give so much of themselves for children they don't know. 

And initially it was easy. 

But, truths weren't always exposed during the process with lawmakers. 

Imagine that. 

We didn't know we would have to get 1,500 pre-orders within 2 years. 

We didn't know that the plate may just die before it ever got made. 

I guess it doesn't matter that it was made into a law. 

Law, schmaw. 

But, we soldiered on. 

Had a press conference. 

Sent information to pediatric oncology units in the state. 

Set up a Facebook page. 

And after we did all of that, I saw. 

I saw where people really stood.

And for most people, it was way out in another field with their backs turned towards us. 

And this silence came from the most unexpected of places. 

A place where I thought we would see the most solidarity. 

Other cancer families have been our downfall. 

Please know this, there are some great parents who have supported our cause. 

Who are just as stumped as we are that it's not getting more results. 

A few families who have had a child with cancer who want to give back have supported this endeavor. 

But our numbers seem so insanely small. 

There are far more people who have intentionally not retuned my emails. 

Who have flat out refused to help spread the word. 

People who have much influence, but who refuse to lend a hand. 

And I have no sane reason why they would do this. 

Except this...

It wasn't their idea. 

The money isn't going to their hospital. 

Their organization. 

They tried to do something similar and it didn't succeed. 

I know that all four of the above reasons are truths. 

When we set up a table at the cancer camp our kids go to, we thought that we would get so much action that we would run out of forms. 

That our throats would be as dry as a desert from talking so much. 

But we came home with our arms weary from carrying so many forms back and forth to the car. 

And I was never parched. 

Because the people that we thought would "get it", didn't. 

We were avoided by parents. 

As if we were giving out cancer. 

Instead of hope. 

It was on that day that my heart started to fizzle. 

Like a pin had poked it and I had a small leak. 

And it's still leaking. 

And it's just about deflated. 

Because I have had too many people emailing me telling me what I'm doing wrong instead of asking how they can help. 

It's crazy hard to be an advocate for this cause. 

Childhood cancer isn't pretty. 

It isn't fun. 

It's often fills you up with sadness and a despair that has great depths. 

And I'm getting tired. 

I often wonder if people would be more receptive if our spokesgirl was still sick. 

If she were still bald. 

If she still looked like this...

But she doesn't look like that anymore. 

I don't even know who that girl is. 

I lost my daughter for a few years. 

She had to go into hiding as she fought for her life. 

And I remember when I finally realized that she had returned. 

"Look, it's Zoe. I can see her coming back. I can see her face again!"

Chad saw it, too. 

The chemo and steroids had finally started their long overdue departure. 

Our girl was coming home. 

If we are going to lose the battle of the license plate, I must come to terms with that. 

I must realize that I did what I could. 

I must tell myself that I'm not a failure and that there are other ways to help. 

And I must remind myself that I've already been presented with the biggest and greatest achievement of my life...