My 4 Year old Daughter Emily Grace was diagnosed in Nov ’09 with Neuroblastoma – the 3rd most popular childhood cancer (yes a whole 650 kids are diagnosed each year…great odds Em!). Here’s how we got the reputation for “making cancer more fun than anyone.”
Today Emily was discharged from BMT. (Bone Marrow Transplant) It was a day of mixed emotions. Fear…leaving the “safety” and “sterility” of the hospital. The safety to 4 hour vitals, twice a day doctor checks and huge PRECAUTION signs outside her door warning everyone to gown up, mask up and keep germs away from her. In the “real world” no one wears a mask or a gown or really comprehends that their small cold which is more of a nuisance to them can be fatal to her.
And yet it was a day of Freedom. With 4th of July almost here we celebrated a different kind of “Freedom” party today! With Red, White and Blue pony tails, hats, lies, and necklaces. We sang “I’m Free, I’m Free,I’m bustin’ out of BMT! woo woo woo. I’m Free, I’m Free, that’s right I’m Emily! woo woo woo woo.” Celebrating her crossing a major milestone in her cancer treatment.
We checked into Brent’s place. An apartment like setting just down the street from the hospital. We will be staying here for awhile. We are the 1st family they have taken that lives less than 60 miles away. Usually Brent’s place is reserved for out of town families. Our”situation” though has landed us here. Emily will stay at one place and Rob and I will go back and forth. She will be “sheltered” from the outside world, at least temporarily. At our conference with her PA he advised us to keep her in a “bubble,” She can’t leave the apartment without her thick blue air filtering mask on. That means she can’t eat in public. No picnics and no restaurants. For a mom who’s favorite past time is eating out this was hard to stomach. “But she loves picnics” I said. If she is away from crowds and people can she at least lower her mask and take a bite? I try to negotiate knowing that one the “goals” Emily has been working so hard for is to leave BMT and go on picnics again. The PA looks at me. The 1st 100 days are the most critical in her recovery. I’ve heard the stories of kids who breeze thru BMT only to come back with a yeast or fungal infection. They are deadly. Emily is almost to day 30.
“It’s 70 days or the rest of her life. I’d err on the side of caution. No picnics.” He says.
Em sits on the couch not talking. She’s mad. This isn’t “home.” This is a strange apartment. Sterile and unfamiliar. She wants to go home. She’s worked so hard to get through her BMT. And this is her reward? I know how she feels. I’m unpacking our bags. Trying to put things away. This isn’t home. This stinks. I want to be home. In my bed. My kitchen. My Stuff. If I feel this way at 33 could I really expect my barely 4 year old to feel differently.
I bribe her with a “tour” of the place. The game room, the video room, the family area, the playground. She tugs on me. She wants to go outside and play. It’s warm. The sun is setting and it couldn’t’ be a more picturesque time to be outside. I left my phone upstairs. Can I make it through 30 minutes of playing outside without my electric leash? The same kid who hasn’t walked further then her hospital bed to the bathroom without crying is now hobbling around the playground. We are the only ones outside. She sits on a green tractor while I push her around. She checks out the super cool child size hand crafted wooden play house, but then decides it has bugs inside and she’s outa there. She doesn’t talk. Her mask covers most of her face. She points for me to pick up the basket ball hoop. She shoots two times and makes both baskets. I’m impressed. Do I have a budding basketball superstar? I would have said she’d be tall enough (I’m 5’10 her dad’s 6’3) but who knows after radiation she might be short…5’7! She systematically makes her way thru each section of the playground.
As I watch her I am suddenly overcome with sadness. How many moms take their kids every day to the playground? I know those kids don’t appreciate it the way Emily does. Something so “normal” so “mundane” to other kids is HUGE to her. To be outside playing on a playground, hobbling walk and all, is such an exceptional experience for her. I am strangely overcome with this feeling I can’t describe. And suddenly it hits me…. grief. The realization of how much childhood she has lost because of her cancer. This will be our 8th month of cancer treatment. In some ways it feels like 3. To say 8 months sounds so long. Then again, my life BC (before cancer) seems so hard to remember. She has about another 8 months to go. She’ll be almost 5 when she’s done. 3 ½ – 5 …time that will just be gone.
I’m grateful for her age. That hopefully she won’t remember too much. That she isn’t missing her friends, school, her activities. And yet, her pre-school years are so vastly different then other children. She isn’t going to the park, the zoo, or nursery school. She isn’t getting to sleep in or just play in her home all day. She doesn’t go to birthday parties or even get to have a birthday party with other kids. She can’t get dirty or play in the pool. She knows words like Broviac, Heparin, and TPN. She draws back her own blood & pukes in the tub. I hate cancer. It’s stolen her childhood. It’s stolen my precious time with my precious child. I want her to be “normal.” To have to console her because she fell and scrapped her knee at the park, not because I just held her down while she screamed “mommy make them stop” as a Dr shoved a nose tube down her. I want to cuddle with her and watch a movie and have popcorn and it not be in a hospital bed. I want to take her to the children’s museum, casa Bonita, and Pirates cove. I want our days to be ones that don’t involved doctor visits, daily temperature checks, and a 2 hour bed time routine of line care, feed tubing, fluid pump, mouth care, & medication. I want to take her to get her pictures done, and to the beach, and get her a kitten. I want to argue with her about staying up past her bedtime not refusing to take the plate of syringes she needs to swallow every morning.
Today is the 1st day I feel like I’ve lost something. Something precious and something I will never recover. I feel so guilty. What I have lost is nothing to what Emily has had to go through. I watched her today lying on the radiation table. Her screaming, as she got her 4th nose tube in 2 months (she keeps puking them up) She say No! Wait until my med kicks in, Mommy make them wait” then she cries, then I cr, then she screams, and then I close my eyes and pray while I hold her down.
And yet watching her on the playground is what makes then me sad. I remind myself Emily will be stronger than any kid I know. That she will have an advantage in life simply because she has had to overcome so much at an early age. That God has plans bigger than I can fathom for her and that her strength and will to fight will serve her the rest of her days. That mastering the “sharing circle” in nursery school is nothing compared to kickin’ cancer’s butt.
She’s standing in front of the big white steering wheel on the playground. She looks at me. Her eyes get wide. She puts her hand to left ear. She shakes her head and then her butt.
“What Em?” I ask “What do you hear?”
I can’t see her face under her mask but the gleam in her gray/green eyes gives it away.
“You hear someone screaming?” I ask. “Someone screaming NO! NO! NO! ? Someone who is mad you are on the playground? Is that someone Stupid Tumor?”
She nods happily and shakes her head in a Na Na Na Na Boo Boo” way, nodding in the direction of “Stupid Tumor.”
It’s in that moment I’m reminded of one of my favorite quote,s “The Human Spirit is stronger than anything that can happen to it.”
I think Emily and me….
we’ll be ok.
It’s a funny thing.
We all have it.
We all have it differently.
I’m walking into the hospital today. Pulling a wagon filled with my “stuff” for the next few days here. As I was driving here it was 80 degrees. A beautiful, sunny, perfect Colorado day. I was feeling resentful of having to go back to “live” at the hospital. Now I’m not an outdoors person and yet I was strangely wishing I could escape for a day in the mountains to just hike around (those of you who know me read “hike” and now need to be resuscitated). Yet I pictured driving (ok well someone else driving) up into the mountains, leaving Denver, and all the stresses of my life behind. If even just for an afternoon. I realize I’m jealous that others are on “VACATION” mode. Boating, going to Water World (my fav place in co) BBQing, and just enjoying the beautiful state we live in.
My mind however, is not on vacation; instead it’s heavy with worry. I had just left the bank after cashing in some bonds to put money into my checking account. Driving here, I was the on the phone with my mortgage company trying to work out a modification on my loan. I then had to call my health insurance company to see if they received my check (I had sent it 3 weeks ago and assumed it had cleared by now. However, I’m working on being “proactive” in my life vs. “reactive” so I’m feeling good about myself for calling to confirm they have it – rather than work in crisis next week if they didn’t get it and my policy was canceled.) I find out they just got it (3 weeks late?!?!) and it’s posting today. Crap. I thought that money was already out of my account. Crap Crap I hope that check doesn’t bounce. I’m thinking of all of this, worrying about finishing my month end, already planning how I’m going to book my Wednesday night class which I “need,” avoiding calling to reschedule my Dr’s appointment that I missed this AM, and feeling that pressure on my chest that feels like someone is stepping on it (an all too familiar feeling these past 2 years) and then I walk into the children’s hospital. A feeling of anger for having to leave the beautiful weather and enter back into the life of the hepa filter vacuums stirs. I walk down the hall. I glance to my left.
A little girl no more than 2 is standing on a couch peering into the fish tank. Her mom stands with her. I wonder for a minute why she is here. Fish tanks are the standard parent practice of “my kid has cabin fever and I need something to amuse them with.” How long had she been here? All of a sudden I’m sad for her. This child who should be outside enjoying this beautiful weather is here. In the same Hepa Filter vacuum I’m complaining about. She should be in a park, at a picnic, or at least home with her toys and yet here she is.
As I sit here and type I’m watching a mom pulling a baby dressed in a hospital gown laying in a wagon kicking his little fists in the air. A teenager in a bathrobe just walked by on the way to the cafeteria. I wonder if she missed her prom. Her graduation. Why is she here? Kids come by with their poles attached to lines and lines. In wheelchairs, some with limbs, some without. A teenage girl walks down the hall with her parents on either side. On leg is gone completely and she has a prosthetic all the way up her thigh. The other leg is there down to her knee and the prosthetic is attached to her knee joint. Even with her metal legs her walking is awkward and jerky. (and I worried if my hair didn’t come out “just right” when I was 16) Kids walk by with masks on their face. A reminder that the world itself, their home, can kill them. A mom sits just a few chairs down from me. Her 1 year old is running around with her hospital bracelet on her wrist. She sits on her computer. I wonder if she’s researching. Looking for answers, treatments, cures. You can always tell the new families on the Oncology floor. They’re the ones on the computers devouring every site they can find on cancer. Looking for answers. Looking for miracles. Looking for someone who will say “I can stop your kid from dying.”
A feeling washes over me. Is it a feeling of peace? A feeling of calmness? Or perhaps it’s a feeling of perspective?
Perspective that I appreciate that I’ll be heading upstairs to hang on the 7th floor with the person I love most in the world. I appreciate that I have right now, this moment, today, with her, and she is doing well.
Perceptive that all my worries are fleeting. Nothing last forever. And money is just money. You can always make more. Perspective that what money can’t buy, love, is flowing in abundance in my life. Perspective that I have it pretty good.
As I’m sitting here I watch Brandon, Emily’s BMT (Bone Marrow Transplant) PA (Physicians Assistant), walk down the hall. He is a childhood Cancer survivor. He had leukemia as a child and received a Bone Marrow Transplant during the course of his treatment. Worse them Emily because he needed a donor (Em could use her own stem cells drastically reducing a lot of the complications these children go through.) He talks from 1st hand experience. How the Vitamin D Supplement that Emily spits out really is disgusting. How mucasitis – the sores that run from the inside of your mouth down thru you to your bottom- feels like burring. That you hair grows back and yup it’s different. He’s one of the people I hold onto tightly because they represent victory to me. A reminder that cancer can be stage in your life, but doesn’t need to BE your life. A reminder of the saying “this too shall pass.”
What I love about Brandon is that you’d never know he had cancer. And yet, he has an air about him. I noticed it from the moment I met him. He’s young. Too young to have “air.” I’ve never been able to put my finger on just what it is. He walks with a certain “laid backness”. He talks with a certain self assertiveness unexpected in someone his age. Very matter of fact. A certain energy that says “this is who I am, this is what it’s about, and that’s that.” I try to imagine anything in the world shaking him. Rattling him. Or even angering him. I can’t. Even his walk seems to say scream “I take it all in stride!” It’s hard to decipher. It’s not a cocky confidence, it’s not an arrogance. it’s something else……
Maybe…. it’s perspective.
Face painting Mom in colors that resemble poo (thanks KC for that). What else do you do to entertain a 4 year old on isolation at the Children’s Hospital?
YOU AND YOUR FRICKIN’ HEADACHE
I got a text from a guy I really like…
“Another Frickin headache today 😦 How are you?”
I didn’t respond. I couldn’t think of one non-confrontational thing to say. He had a migraine the night before. I get that. I get migraines. Horrible. I have to lie in a dark room. My stomach is riveted with nausea. Noises feel like hammers on my head. Headaches hurt.
And yet this text is from someone who knows me. Knows I’m spending my night on the 7th floor Oncology Department at Children’s Hospital. Your headache needs a “frickin?”
I wanted to text back….
“You don’t have cancer stop complaining”
“I’ll trade you for cancer”
“There’s a young boy next door who can’t go home because they are draining fluid out of his brain with an exterior shunt and he keeps getting fungus infections…I bet he has a headache too”
“The baby on the other side of us with Down Syndrome and Leukemia has been up all night..I bet her mom has a headache”
“Probably not the best person to text this to for sympathy..you know cancer and all…”
What I really wanted to say is WHY? WHY? WHY? would you fill my day with your negativity? How do I balance being sympathetic (headaches stink) with my complete new zero tolerance for complaining. My new perspective on what REALLY is worth complaining about (and for the record, nothing is worth complaining about – it can always be worse…trust me)
I realize why so many people are always commenting on how positive I am. And I’m becoming more aware that it is a choice. Sometimes I think “that’s just me.” However, when things have been hard (like last week – Emily had been running 104.5 temps that we couldn’t break..and had pain in her intestines that was keeping her on a narcotic drip…and couldn’t talk and laid in bed with mucus dripping out of her blood stained mouth…and the Doctors weren’t sure if it was an infection causing the swelling of her intestines or if possibly just possibly the chemo had destroyed the integrity of her intestines or maybe her immune system was turning on itself and attacking her intestines.) Yeah I was stressed, I was scared, I thought “Did we come this far for nothing? Has she been this strong for nothing?” I wanted to slip into the land of fear…and let it overtake me…paralyze me.
And then I made the choice. “NO. She will be ok” (well and it helped that Debbie S reminded me of this with such confidence and assurance and 100% conviction that I believed her) I reminded myself she HAS come this far. She is strong and a fighter and this is just part of her fight.
It is a DAILY CHOICE to control my attitude. To control my mind. Even now, those thoughts of fear slip in. 2 kids died this month on the floor. It is a stark reminder.. kids die. Kids, like Em, who go thru treatment, who fight, or win the battles, and then lose the war. And then I consciously say to myself, “No, not like Em. Em will be the statistic of success.” She has a 50% cure rate right now. 1 in 2 kids who walks in thru theses doors and does this treatment program will die. And 1 will live. 1 will be victorious. 1 will win. I look at Em. I tell myself SHE IS THAT ONE. I also acknowledge that if they told me 1 in 100 kids will live I would look at her and say SHE IS THAT ONE. Why not? If someone’s kid is going to be the winner why not mine? Why not Em? Why not?
No one know why 2 kids with the same physical cancer, same chemical drugs, same treatment program, same EVERYTHING will have different fates. One will live and one won’t. (notice I can’t even type the word D-I-E) So if no one knows medically why one survives and thrives then it’s not medically related. It’s spiritual. It’s attitude. It’s your soul. Your will to win.
I accepted early on I can’t control Em’s cancer. I can’t control her drugs. I can’t control the infections she might get along the way, the germs that will wage war on her compromised immune system. I can control her mind. I can control her attitude. They say your subconscious doesn’t know what’s real or not. That it will look to create in your reality whatever you tell it. I decided early on to brainwash her. That SHE is a Miracle Kid. That she WILL Kick her Tumors Butt. That she will WIN.
We talk about her 5 year old birthday (she wants a “pink water kitty” one that will play in the pool with her and yes, is pink. When I explained I have never seen a pink cat she didn’t hesitate to point out Strawberry Shortcake has a pink kitty and so she can have one too)
We talk about her 6 year old birthday…we want the whole family to take a Disney Cruise together. Celebrating her 2 years post Bone Marrow Transplant (that’s when the Dr’s have said you can breathe again…never normal breathing of course, but at least breath)
We talk about her starting school…how when other kids are told they “can’t” they will think they can’t. And when someone tells Emily she “cant'” she can look at her courage beads and say YES I CAN!
We talk about her learning to drive and how scared I’ll be and how I’ll wish we were back on the “Bear Floor” because that was less scary!
We talk about her Prom, going to College, getting Married, and what a great mom she’ll be.
We talk in detail. Filling her subconscious with expectations it WILL fulfill.
Tonight she is lying next to me as I type this. Hooked into her IV pole. Her arm twisted up and around my bicep listening to Taylor Swift (her fav) with her eyes closed. She tried singing and her throat is still swollen. She looked up at me “Mommy when we go to Brent’s place (where she’ll stay after we discharge next to the hospital) will I be able to talk normal again?”
“Yes Em you will I promise, it hurts to sing huh?” She nods
I rub lotion on her feet, her legs, her arms, her hands, her back, her bald head. I go to rub lotion on her scars. The two deep ones on her right side. One where a chest tube stayed implanted into her for over 2 months. The other where a 2nd chest tube stayed for over a month. The 2 month one is deep and wide. It was put into her in the ER when she was 1st admitted. It was “stick this in get that fluid out, she should be dead already, who cares what it looks like” scar. and then the now “famous” “Diamond Cut” the 8′ cut across her abdomen where they took her tumor out.
She pushes my hand away. “No” she says.
“Em I let me put lotion on those scars, it will help them heal”
“No she says “I want them”
“Why do you want them?” I ask giving her a look of exasperation
“Because they’ll remind me how brave I am.”
She snuggles up under her hospital sheet.
I look at her in awe.
Oh what was that about your Frickin’ Headache?
Em doesn’t want to take her Tylenol because her throat hurts. Her CAT scan showed her esophagus is inflamed and they think it’s all the way up to her mouth. So I get that. It hurts. She’s puking up blood. Her face is swollen. Her intestines are swollen and they don’t know why. Blood work normal, poop scoop normal, waiting on 1 other test. Last night she is 41.4 as her temp. Today she is 39.1. The kid needs Tylenol.
How does one explain to a 4 year old why she has to take this med that is going to burn her mouth that’s filled with open sore and then hurt to swallow? Our body is wired to steer clear of pain and here I am, her mom, saying do it anyway even though (to quote Sara McLachlan) “this is gonna hurt like hell”
Well here is my 9:30am fly by the seat of my pants shot….
Climbing into bed with Em. She’s laying on a cooling pad, wet cloth on her head. She looks at me with her blood stained lips and swollen chipmunk cheeks.
“Em you feel crummy right: Your body feels achy and tired right? You want to know why?
Remember you got your stem cells…and they got back from “boot camp” where they were learning to kick cancer butt. And the BMT chemo killed off all your white blood cells just in case there were any “traitors” in there right? And your Stem Cells started making new baby white blood, remember? And then they became grown up white blood right? And remember how you were surprising everyone because you had baby white blood before you were supposed to right? And remember how on your chart you were only supposed to have this much white blood (I take my fingers and show a small 1 inch with my thumb and finger) and you had THIS MUCH (I spread my hands apart showing a big space) and even your Dr’s didn’t know how you were doing it!! And it’s because you’re a Miracle baby that your white blood is sooo strong?
Well here’s the deal Em – you got a buggy in your intestines. Do you know what your intestines are? You know how your belly hurts? (She nods) well when you have food it goes in your mouth down all the way to your stomach and then into your intestines and then you poop it out (bringing up poop always a big hit – meanwhile I’m tracing my body from my throat all the way down – yes to my butt!) Well your intestines have a buggy in there – a buggy who is friends with your tumor. Now your Dr’s are giving you antibiotics in your “tree” (IV pole) to help kill the buggies. But here’s the deal…. you are soooo strong and your white blood is soooo strong that it’s fighting the buggies off. So your white blood ran down to your intestines and is having a war with those buggies! GET OUT OF EMILY! POW POW! GET OUT OF EMILY GRACE MIRACLE KID! And they are all fighting.
Now, you’re a Miracle kid so your white blood will win and will kill all the buggies. But here’s the deal when they fight they make your intestines get all puffy and swollen – your intestines don’t like all that fight in in them. And with everyone knocking each other around and hitting the walls of your intestines your intestines are getting hurt and swollen. So your intestines tell your body to hurry up and win and stop the fighting. So what your body does is it gets really really really hot.
So you know how daddy doesn’t like the heat? It makes him cranky and uncomfortable? Now if it was mommy fighting I would love the heat! But the buggies are like daddy – they don’t like the heat. So your body thinks “if I get it hot enough” the buggies will stop fighting and the white blood will win!!! The problem is the white blood is getting hot too!! And they are getting tired from the heat and can’t fight as strong. They are sweating Em!! So if you take your Tylenol your body will cool off and your white blood won’t be so hot and it will kick the buggies butt! But they need YOU to help them by taking the Tylenol!
Stupid tumor doesn’t want you to take it! Stupid tumor wants your white blood to be hot so the buggies will win!!! You can do it Em… (taking her hand and looking her square in the eye) Mommy always tells you the truth right? I’m telling you, you can do this. I know it will hurt and I know you can do it anyway. I know you are the strongest kid I know. I know you are stronger than your tumor. I know you can do it. “
We order up 2 Tylenols (a backup in case she spits them out) I’m prepared …thinking ahead.
#1 goes in
#1 gets spit out
No worries – remember I have a back up
#2 goes in
#2 gets spit out
Remember I have the most strong willed child on the planet. So much for the backup.
“Em you are wasting meds! You can spit them out. There won’t be enough for the other kids.” She looks at me narrows her defiant gray/green eyes…her one little naked sholder shrugs up at me and she arches one hairless eyebrow at me as if to say “so what?”
We order 2 more.
“Em that’s not your best. I need you to do your best…do you hear that? Do you? It’s Stupid Tumor! He’s having a party in pathology! You spit them out! All the tumors are high fiving! They’re saying “We knew she couldn’t do it! Ha ha! She can’t she can’t!
Come on Em –I know you can. That wasn’t your best. No I’m not going to rub your feet. You didn’t do your best. I know you can. Remember our deal? I take care of you. You do your best. “
15 minutes pass waiting for the new meds to come up.
#3 goes in.
2/3 gets spit out.
1/3 is in! Small victory
She screams – her mouth is burning. We give her water.
Give me #4 – the RN is surprised at my persistence. “She can do it” I say. “I know she can. Come on Em. I need your best.”
#4 goes in
1/3 gets spit out.
“We’re going to keep doing Em until you take it because I know you can.”
The rest goes in. She swallows!
“Do you hear that Em? Do you hear that? You don’t??? It sounds like…..”No!!! No!!! She did it!!! She did it!!!” Stupid Tumor is screaming!! The other tumors know you took it!! “Stupid tumor we TOLD you not to mess with a Miracle kid!” Em you did it! You did it! I knew you could! You did your BEST!!! I know it was hard. I know it hurt. You can do anything Em! You ARE a Miracle kid!! I am so proud of you because you did your best!!! The white blood is saying “Yayaya she did it! Take THAT buggies we’re kicking your butt!”
Em looks at me. She smiles through her blood stained lips. Her sheet wiggles.. . She’s shakin’ her booty at the Tumor. She’s a fighter. She’s victorious. She’s my Miracle Kid.
Take that Stupid Tumor.