Two years.
It has been two long years since my daughter took her last breath in my arms.
Two years since I held those beautiful hands.
Two years since I smelled her stinky chemo breath.
Two years since her laugh echoed through the house.
Two years since I got to hear her say, "I love you, Mommy."
It was early in the morning on March 30, 2018––Good Friday––when I knew my daughter, Hazel's, time on this earth was coming to an end.
She was fighting neuroblastoma––a tumor based cancer that affects a child's sympathetic nervous system and is found in about 700 children every year in the US––for the third time.
There is currently no known cure for relapsed neuroblastoma, but that didn't stop us from fighting. Hazel had already beat relapsed neuroblastoma once, and she was gearing up to start a new and promising clinical trial.
Her spirits were up, despite the constant pain from her tumor and she was ready to fight.
She was ready to try the next treatment in hopes of a normal childhood.
Although, finding Hazel filled with hope wasn't unusual.
She had a way about her. She made us all believe in something bigger than ourselves and helped remind us what was important in life––love, laughter and hope.
She had scans scheduled for the first week of April. Frequent disease evaluation is critical when treating children with aggressive cancers.
She was tired, but not any more tired than usual.
And she had a cough. A cough that just wouldn't quit.
And one day in late March, just a week before her scans, Hazel spiked a fever––which in the childhood cancer world means automatic hospital admission.
We arrived on Monday, with an X-Ray determining Hazel's cough had developed into pneumonia.
Pneumonia made me nervous, as it could be lethal for an immunocompromised kid, but Hazel's white blood cell counts were up and I knew that she could likely fight the infection.
On Tuesday, her oxygen levels were improving. The doctors believed the antibiotics must have been working and that we should be back home by the end of the week.
But even though her stats were improving, her pain was unrelenting and getting worse.
Hazel's oncologist wanted to take advantage of the upcoming scans and decided to move them up to get a better look at what was going on.
Late Tuesday night, when the hospital was still, Hazel lay in her hospital bed and was rolled down to the CT machine.
Lifting her onto the exam table was a struggle.
Not only was it painful for her, but she was connected to countless wires and tubes––a common sight for childhood cancer fighters, but still cumbersome.
Wednesday morning, Hazel's oncologist called and asked for my husband to come to the hospital to go over the results of the scan.
We knew this meant bad news, but we weren't giving up the fight.
Not yet.
Not now.
Not after five years of fighting.
And last scan showed we still had time.
What her doctor told us in the family meeting room that day was something I wasn't prepared for.
No matter how many statistics you know––no matter how many children you watch lose their lives––no matter how much suffering you see your own child go through––nothing prepares you for the words that followed:
"Hazel's lungs are not affected with pneumonia. What the X-Ray showed as infection is, in fact, extensive disease. Her tumors have grown and are consuming her lungs. It is beyond what is treatable and there is nothing left for us to do. We are so so sorry."
The feeling of desperation, overwhelming grief and powerlessness is something I wouldn't wish on even the worst of humanity.
I asked how long we would have left with our girl, and the doctor told us we had "about a week, maybe two."
But it was Friday, only two days later, that Hazel was gone.
Hazel spent her last two days with her pain better managed than ever before, surrounded by family, friends and all of the staff at the hospital who grew to love our daughter during her fiver year battle.
She was groggy but awake––talking and laughing.
She kept saying, "I don't want to sleep because I don't want to miss the party."
We decided only to tell Hazel what she wanted to know. We didn't want her last days spent in fear. If she had questions, we would answer them, but we did not spell out everything for her. We thought we had more time to figure it out.
What we did do was make sure to let Hazel know that if she was done fighting, it was okay. Okay, not only to be done fighting, but okay to finally rest.
What transpired over those two days taught me more about life and death than anything I had ever experienced before...or since.
Hazel drifted in and out of sleep, talking to us every step of the way.
She spoke of butterflies, puppies and kittens. She even spoke of a dog lost long ago to cancer.
She sang songs of her own creation that seemed to come from the very depths of her soul.
She told everyone: "Daddy needs lessons in listening!" "I'm Hazel the hater. I hate all of this going on!" "The butterfly came back to us because it missed us, but now it's home where it belongs."
Throughout the night on Thursday, Hazel's lungs were working harder and harder. She held her oxygen tube close to her face for comfort. Each cough made her more and more tired.
At 5:00 in the morning, her oxygen levels had dropped and were showing no signs of recovering. We called our immediate family, and they were at our sides with our other children within an hour.
Our home hospital, Children's Hospital Los Angeles, was understanding, supportive and loving during this time. The staff had brought in an extra bed so Hazel could be cuddled by her siblings and parents, all at once.
By six in the morning, it was quiet and still. Hazel finally found some peaceful sleep and we all slept beside her for the next hour.
It was beautiful.
Around 7:40 Friday morning, Hazel's siblings were all down in the cafeteria eating breakfast, and it was becoming clearer that she had mere moments left.
We called for them, asking if they wanted to be in the room to say goodbye. As hard as that decision was, each and every one of them said yes.
Hazel rested in my arms as her brothers and sister told her how much they loved her and that they would never forget her.
She heaved a heavy breath and with her eyes closed, her body relaxed and her hands holding her Daddy's, she said, "Wait, am I dying?"
I said, "Yes, sweetie. You are."
She replied, "I'm a little scared."
Aaron said, "It's okay, Hazelnut. Just know that God is right there waiting for you."
And I said, "Yes, and we are all right here with you. We love you and you will be okay and cancer-free."
She slowly smiled, took her last breath and said, "Byyyyyeeee."
With that goodbye, her heart stopped, her lungs stopped taking in air, and our Hazel slipped to the other side of eternity.
Even writing this words today, I am trembling with tears filling my eyes.
No seven-year-old should have to face this moment.
She deserved to live.
But she also deserved a life without fear, without chemo and pokes, without cancer.
And she has that now. She will never be touched by the monster we call neuroblastoma again.
Although two years have passed, Hazel's last days are as clear to me today as the day they happened.
The pain of losing her is just as great.
The amount I miss her has only grown.
I struggle with bitterness and confusion every single day.
Half the time, it is hard for me to even believe she existed in the first place.
Her absence is just so great.
But somehow, with each passing day, I am coping. I am growing. I am living.
I am trying to hold fast to the signs that abound and to the beauty that life still has to offer.
Just as I did during Hazel's treatment, I am learning so much from her––in ways I never even knew possible.
My hope and my prayer is that these lessons will take root in my soul and keep me close to her––reminding me that she is not gone, but waiting for me.
