It’s 2am. I log onto facebook (yes I’m addicted) I see the post. One of the families I’ve become close to lost their beautiful daughter to cancer tonight. It had been a LOOONG battle. Reality hits you in the face & a mental battle starts. A mental battle not to let fear win.
Emily has been doing so well it’s easy to “forget” she has cancer. HAD cancer. Well, I guess her doctors would say she still “has” cancer. She is still undergoing cancer treatment for 6 more months. She still is on the “Cancer Kid Roster” and her “Pediatrician” is an Oncologist. So I guess technically she “has” cancer. Her last scan was clear. Her last bone marrow aspirate was clear. I tell her she HAD cancer. She doesn’t anymore. Now we just keep fighting to keep it from coming back.
We’ve been at home 2 weeks. It seems like forever. She’s playing, laughing, and constantly checking the front window to see if our new neighbors are outside with their 2 little girls. Kids she can play with. Every day she asks if “the girls” will be outside. Desperate for children to play with my heart aches at her plead for normalcy. These are the most “normal” two weeks we’ve had in almost 10 months. Well, she still won’t eat and carries around a canvas bag holding the TPN bag that infuses nutrients into her 12 hours a day– keeping her alive intravenously. But her hair is growing back. She hasn’t had an infection in over a month. No more daily temp checks. We’re down to just 7 meds a day. And I’ve gotten used to the “whats?” as we wait on her hearing aids. It’s so easy to think we are in the clear.
And then I read that post at 2am. Another child has died. That’s the 4th in the span of just a few months. And those are only the ones I know. Another beautiful child, who fought and fought and lived the last year of her life in a hospital bed, to lose her battle. A family that prayed, cried, and kept a positive attitude. A mother who lost the baby that she once held in her arms and imagined her future and who she would become.
Reality slaps you in the face at 2am. The scans may be clean but my child has cancer. Cancer kills. Cancer takes dreams and goals and futures without bias. Cancer kills children. Children who fight and win the battles only to lose the war. If the devil created a disease cancer would be it. It quietly kills your spirit before it kills your body. Cancer. I have emotionally detached myself from the word. I am careful what I say. What words I give power too. “Emily is undergoing cancer treatment.” “Emily had a tumor.” “Emily’s scans are clear of cancer.” “Emily will be a person who had cancer.” Emily. My child. The only saving grace from an 8 year abusive marriage. The child who gave me the will to keep going when I was so deep in depression at the end of my marriage I didn’t care about anything, even getting out of bed. Emily, the child who was my reason for putting one foot in front of the other when my world collapsed, her dad was stalking me, and I went to bed each night with my alarm key and cell phone next to my pillow. The child that each day gives me a reason to not give up.
I climb into the toddler bed with her & just hold her and listen to her sleep. Tears streaming and asking God to forgive me for the moments that I get frustrated with her & don’t appreciate every SECOND I have with her. This past week flashes before me.
Getting frustrated that it was 10pm and she STILL wouldn’t go to sleep. That every time I left the room she’d start crying and get of bed.
“Em I told you I was going downstairs to check on my bagel” ~ “ BUT I MISSED YOU!”
“Em I told you I was going to the bathroom” ~ “BUT I NEED YOU!”
“Em I told you I was going to brush my teeth” ~ “BUT I COULDN’T SEE YOU!”
“Em I told you I was going to wash my face” ~ “BUT I DIDN’T WANT YOU TO!”
“Em I told you not to get out of bed!” ~ “BUT I HAD TOO!”
And then the 1 millionth time she said “Mommy??!!???”
and I said, “Em just stop! Don’t’ ask me another question!”
And then finally when I said, “Em, I’m beat I’m going to bed.”
And she asked. “Mommy what if I need to puke can I call you?”
“Will you wake up and hear me?”
“Will you come get me?”
“ Yes Em.”
“Will you get a me a puke bucket?”
“Yes Em, just go to sleep!”
“ Yes Em,?” with mounting exasperation.
“ Will you get me a tissue to wipe my face if I puke?”
“No Em just use your sheets!”
But now it’s 2am. I’m overcome with guilt and begging God to forgive me I wasn’t grateful I was tucking her into her own bed and not a hospital bed.
Forgive me God.
I’m sorry for every time I resent having to get 4 syringes, 2 needles, 2 vitamin vials, blue connectors, saline, a pump, a new battery, tubing that I can never get to connect properly and end up screaming at and wanting to throw across the room, a giant bag of TPN and more alcohol prep pads then I can count. Instead of being grateful that science has created a way to keep my child alive while her stomach has shrunk so small that when she doesn’t eat she gets a hunger pain and when she does eat she still gets pain because her stomach has literally “forgotten” how to eat.
I’m sorry for every time I have to change a diaper and I’m mad she isn’t potty trained anymore after spending almost 9 months in a hospital bed. Instead of being grateful that pee and poop isn’t blood and vomit.
I’m sorry I resent that I can’t take her out to eat, go to pirate’s cove (because yes, I want to go) go to the outdoor summer music concerts (because yes, I want to go) or go on a picnic (still me who wants to go). Instead of being grateful I can sit on the couch, cuddle he,r and read her a book.
I’m sorry I resent watching my checking account dwindle from the cost of gas and having to drive back and forth to the hospital multiple times each week. Or the swipe, swipe of my debit card from all the meals I’ve had to buy at the hospital while we are there. Instead of being grateful I can drive back and forth and that I have a car to do that (instead of the families I see outside the hospital waiting for the bus), grateful I have money and people who’ve helped with gas, and that going back and forth means she’s winning her battle and isn’t in the PICU dying.
I’m sorry I sometimes feel relief even though she is crying hysterically that she has to go stay with her dad. Even when I’ve had to give her 2 business cards with my picture (in case she loses one) and promise multiple times I will call her and go over just as many times when I will pick her up, and have to give her a “mommy kiss” in her palm because a mommy kiss can’t be wiped off, and I watch her cry and ask for “just one more hug,” and then sob as her dad takes her. Because her going means I will have chance to get done what I need done, and sometimes it’s work but sometimes…. it’s just a break with my friends… and that’s when I feel even more guilty. Instead of being grateful that it’s only 10 days a month not 15.
I’m sorry I resent seeing piles and piles of toys scattered all over my family room and remind myself of my vow that I will be grateful for those bags of toys because toys mean Emily’s home with me.
I’m sorry I resent I turned down 3 dates in 2 weeks because I had her with me and I secretly dream of a “normal life” too. Instead of being grateful that she IS my life because without her my life would never be “normal” again.
I’m sorry that as we get closer to the end of treatment I start “planning” again. Setting goals for work and worrying about how I’ll manage Emily and working FT again. Instead of appreciating that I get to juggle work and Em, that daycare isn’t part of that plan, and that she is finally old enough to go with me for almost everything. Reminding myself that school is just around the corner and I need to appreciate this short precious time when she is with me before friends, sports, and homework takeover.
I’m sorry there is a part of me that dreads packing my suitcase this week to have to live back at the hospital. Instead of being grateful that Bio Therapy is available to Emily. Because it only became available nationally just over a year ago and increases her cure rate 15-20%.
I kiss her peach fuzz head. Her hair is growing back dark. The click click of her pump echoes in the dark. I’m grateful that at 5’10” I’m still small enough to fit in her toddler bed with her. I savor this moment just holding her. I can’t imagine my life without her. Without her constant barricade of questions, “mommies!” fits, demands and giggles.
I lay there in a mental war. Fear is attacking every corner of my mind. The 4 kids who have recently died. Their names, their faces, their parents faces, flash in my mind. Cancel. Cancel. I fight back. The colors of life death sign flashes past me. Cancel, I say. A picture of my life without Em fights to gain foothold in my mind. Cancel. Cancel. I refuse to let fear win. After Bio Therapy statistically 6.5 – 7 out of 10 children will never relapse. They will go onto to live their lives cancer free. Since you can’t have ½ a kid I round up to 7. 7 out of 10. Then there are kids who never make it to Bio Therapy. I remind myself of Emily’s Bone Marrow Conference. Her Doctor, standing at the board going over her next level of therapy and saying “if she makes it to Bio Therapy…..” I remember screaming at him in my head “YES she will make it! There is no IF.” And she has. She IS one of those kids. If 7 out of 10 make it why not her? I picture 7 healthy cancer free kids in my mind. I picture Emily as one of the 7. My mantra this year has been “Why not? Why not her?” If someone has to be the statistical 7 why not Emily? She is, after all, my Miracle Kid.
The next morning Emily wakes up asks me when she goes back to the hospital.
“Tomorrow.” I tell her. “We have to plan your party!” I say trying to make it fun. You can see the look of sadness come over her face. She knows what going to the hospital for a week will mean.
“It will be great Em. We can see Nanette, Melissa, Jocelyn, Anna all your favs.” She agrees. Life seems strange without these women, these nurses, who have become our family this year.
“And Emily,” I say (I hold up 5 fingers) “When you are done with this week you have just 4 more to do. Then you’re done with cancer!”
She peers at me and smiles, “Then I can have a normal life?” She asks. “Well, still checkups, but that’s it.”
“Yup, just checkups.” I respond.
“Mommy, will you hold my hand when I have to get the finger poke?” (She knows that checkups mean her broviac implant comes out and then her blood draws will be “finger pokes.”)
“Yes Em, I’ll hold your hand.”
“Ok Mom.” And she snuggles back in.
She reminds me that even after treatment cancer will always be part of her life.
We will never be “cancer free.”
Those regular checks ups will be constant reminders of her strength, her will, her victory…..
….and my gratefulness.