The family waiting room

By Amanda

Two weeks ago, my four-year-old niece, Alexa, was turning cartwheels in a cheerleading show. Today, she is sedated in the pediatric intensive care unit of a local hospital fighting cancer.

The extended family has been keeping a vigil at the hospital in the "Family Waiting Room." We bring food, water, extra clothes and homemade cards from our four-year-old. The parents are living at the hospital. Grandparents are pitching in to help care for the couple’s other children, girls ages two and eight.

We cannot imagine their pain. We listen intently to medical information gleaned from the Internet about this fast-moving cancer called "Wilms," which has attacked her kidney and liver. Surgery to remove the tumor failed. Now doctors are trying chemotherapy, but there are complications: infections and allergies.

Through all of this, Alexa has been sedated and on a ventilator. We take turns visiting her bedside. She is full of wires and tubes attached to a multitude of machines with red lights and computer screens. She does not know anyone is there. But she appears peaceful and not in pain, unlike her parents. 

They sit in the waiting room with friends and relatives trying to put on a brave face, but they look like the air has been sucked out of their bodies. Their faces are heavy, laden with shock and fatigue. They nod and smile, but you know they are not really present. They are trying to get their minds around the unimaginable. People speak to them in hushed tones asking what they can do, offering sympathy and support.

All we can do is wait. We make no plans for the holidays. Of course life for us goes on, but we know at any moment we may be needed.  We want to be available. We say prayers. We hug our kids more than we did before. We tell them we love them more often, and we wait.

Comments

[Sarah]

Hi Amanda,

I'm sorry to hear about your niece. Our family experienced a similar issue just over a year ago when my 13 year son was diagnosed with Leukemia. As the oldest of four children, he's the "cool one" and the best big Brother around. Now, a year later, he's still hanging in there and doing what needs to be done - Chemo is almost 3 years for his type of cancer. Of course, "You made a mistake" and "Not my son" were my first responses, but the amazing people I meet because of this disease is wonderful. I can't tell you "It'll pass", but I can tell you you'll learn more than you ever needed to know about cancer, and one day, you'll help someone else going through the same thing. Alexa is in our prayers.

Sarah

[Beth]

Amanda, I'm so sorry to hear about your niece. I have a 4 year old niece, Bella, and I would absolutely fall apart if anything ever happened to her. We've become buddies in a way that I never knew was possible between an adult and a 4 year old.

I will be thinking about you and your family, and sending Hello Kitty healing vibes your way. Oh God, reading your post just makes me sick to my stomach.

Your poor family. Hang in there.

[Robin P]

We all think that once we produce a healthy baby the worry is over. It's really just beginning,isn't it? There are so many things that can happen to a child.
I am so sorry that you and your family are going through such a heart wrenching time. It is every parent's nightmare to have something wrong with their child. Parents are supposed to protect and fix all problems and sometimes that just can't be. It is so sad. My heart breaks for all of you. I read this at 9am this morning and couldn't even respond until now. It could happen to anyone.
G-d bless you and your family.

[Elizabeth]

I'll keep her and all your family in my prayers. A sick child is truly a parent's worst nightmare.

[laurijon]

Our thoughts and prayers are with you Amanda, your niece Alexa, and her family.

[Terry]

Amanda. Words fail. My thoughts are with you and your family.

[rachel]

My thoughts are with you all! My sister died of cancer at age 4. There's no good way for a four-year-old to die, but cancer is particularly cruel, I think. As hard as it is, stay available. They're going to need you.