I CAN’T HEAR YOU….AND NOW NEITHER CAN EM.

I posted this on Em’s Fan Page 4-22-10 during her Bone Marrow Transplant Workup Tests…..we just got fitted yesterday for her hearing aids …thought this would be an appropriate re-post 🙂

BMT workup Update!

So after 10 days of my daughter’s father refusing to communicate through our attorney’s in regard to Emily’s BMT workup week today we had yet another fiasco. Long story short I took her to the dentist (after a nice confrontation in the hospital hallway…and yes I still have 2 protection orders) and her teeth are fabulous!!! She was scared to go to the dentist. It took a ½ hour for the transport people to figure out how to get 1 kid, 1 wagon, 1 “pole” with a feeding tube and fluids, 1 mom and a gorilla and pig (they were the stuffed animals who made the “cut” this morning and got to go on a trip to the super cool fun dentist) into a van to get her to the dentist.

When we got in the room we decided the x ray machine looked like an ostrich head. I was, of course, jealous it “kissed” her on her nose, chin and cheek and didn’t kiss me! No fair! I said. I told her there was no way she could bite on the black cookie (x-ray film) and hold it in her mouth. I was sure she couldn’t. She grinned and held her bite. Then laughed and laughed that she knew she could do it! We counted gorilla’s teeth… he only had 15 …she had 20…hers were even…his weren’t …even funnier.

Then they said she brushes better than some 7 year olds they’ve seen. (Insert mom pride here!) I have to say it was my 1st time sitting as the parent watching her brush her teeth while the dentist watched her and thinking…come on… do it right kid! Show them I’m a good parent and I’ve taught you to brush your teeth the right way….” …phew …I passed

EKG & Echo’s….results are in ….they are good!

Hearing test. 1st test comes back that her results are off from what they were in December. Ok let’s do more testing. 2nd test. Her ear is healthy so it’s not from the Corona virus she has (yes it’s actually called Corona virus….it’s basically a cold) 3rd test. Emily sits in the chair. Little earphone on her tiny ears. She has to place a toy into the box every time she hears the “bird” chirp in her ear. I see the doctor writing notes. I don’t know what they mean however I’m not thinking it’s good. Not sure why…I mean maybe those circles are good circles.

Then they put the little mini ear phone on her ear bone. I hear the high “beep” tone. I hear it again. And then a 3rd time. Each time louder. Em sits there holding the block waiting to hear the beep. I turn her feeding tube off. It must be that crunch crunch sound it makes as it turns that’s interfering with her being able to hear that beep.

Again, I hear the beep. I hear it a little louder. A little louder. On the 4th one Em puts the block in the box. She doesn’t know she didn’t hear the 1st 3. It’s all a game to her. I put my hand to my mouth. I’m big into energy. I don’t want my sudden fear to “reach” her.

After the “game” is over I look the doctor. I’m holding back tears. She confirms. Emily has suffered “moderate” hearing loss. It’s from her 2 rounds of that awful Cisplatin chemotherapy. It’s known for hearing loss.

Ok I think, so she can’t hear a high pitch. No biggie right. Then the doctor continues. It could get worse. They don’t know if it will, can’t stop it if it does, and can’t reverse this damage that is now permanent. Ok I think, well it won’t get worse. Like everything else I’ll just make up my mind it won’t. I’m not crying. Em can tell I’m rattled. She keeps fusing and won’t sit still. She’s picking up on my energy. She’ll need 2 hearing aids. One of each ear. What?!?!? I’m sorry I must have heard wrong now. What did you just say? How can this be? If we didn’t even know she had hearing loss until your stupid little birdie beeping test then why would she need a hearing aid? Obviously it’s not affecting her day to day. Well, I learn, actually it is. She hears fish…but only hears the “ish.” Because she used to hear the “F” her brain fills in the blank. She is missing sounds and not realizing it. It will help her fill in those gaps. I hate cancer.

Well it can’t be that bad I mean I’ve seen the commercials hearing aids are like little tiny nothings now…no one will see them. Wrong. Kids her age need the big ones that hook behind her ear. She won’t be able to get a small little in the ear kind until she’s 15 or so. Seriously? Isn’t there a surgery or something they can do to fix these little “inner ear hairs???” I mean it’s 2010!!! Nope. Science is working on it. Nothing yet. Maybe in the future. Right now she is stuck with ear jewelry.

Em is now getting upset because she doesn’t understand what we are talking about. “Tell me!” she cries. She always says this to me when she knows we’re talking about treatment for her. How do I explain to her she can’t hear things she thinks she can? After all I just praised her at how fabulous she did at her “beeping” game. I hate cancer. The doctor shows her a picture of an ear …it shows the inner ear. I explain that she has little “hairs’ in her ears that help her hear. I wiggle my fingers to demonstrate the little hairs. I say they hear high beeps [said in a high voice]. And they hear low beeps [said in a low voice] High beeps [high voice] low beeps [low voice]. I ask …”so when we take our GCSF (the white blood stimulator that we inject into her leg after chemo) what does it do?” She knows this answer “wake up!!” she yells….that’s right ….it goes though her body and tells her white blood to WAKE UP! “Well” I explain “your little ear hairs got tired from the chemo. It made them {insert yawn} and fall asleep” {stop wiggling fingers to show they are sleeping}. So we need to wake them up because they can’t hear the high beeps!! So we get ear jewelry that you wear on your ears and it goes into your ear and says “WAKE UP!” {Lift fingers to show hair is now awake} so it goes asleep {drop fingers] and it wakes up {lift fingers}. This makes sense to her but I’m not fully convinced she’s ok with it. I’m not. I hate cancer.

We leave the room and I walk her down the 15 hundred mile wake back to her room. Holding back tears. I don’t want to see her little bald head touting two large hearing aids. I don’t want her to have a visible reminder every day of her life about her cancer. I want to complete her treatment. Be done. And 10 years from now think…that was a life time ago. Not be reminded regularly that I hate cancer. I don’t want people to look at her. My thoughts rush to her in school. I don’t want kids to make fun of her. I don’t want her to be dateless. I don’t want her to be self conscious. To think she is anything less than perfect. I am keenly aware I seem most upset about “what other people will think.” This is odd for me. I don’t usually care what other people think. She doesn’t ever want to grow her hair back and has told me on more than one occasion if it grows back she is cutting it off. So maybe she won’t care she has hearing aids. I do. I wonder what other long term side effects she will have. Will I look back at these effects and wonder if the cure will be worth the quality of life she will have? Or will these “effects” just be such a part of her she won’t know any different “quality of life.” After all she asked the ER RN for her oxyicodone and atavan upon admittance. She knows the words broviac, CAT scan, catheter, chest tube, tumor, BMT, and biopsy. Maybe her world is so different already a hearing aid or two will be nothing.

I get back to the 7th floor. The kid in the room next to Emily is dying. The colors of life are taped to their door. It’s from the chaplain’s bereavement services.

Suddenly a hearing aid doesn’t seem so bad. I think they even come in some cool colors now.

EM HAS EYELASHES

Written 8-6-10

Emily has eyelashes.

It’s funny how something so “normal” seems to strange. I have gotten so used to seeing her without hair that the short rim of dark lashes around her gray/green eyes look odd.

I remember when her hair first fell out.  She had this head full of crazy curly Shirley temple golden brown hair. It was her “signature.” Everywhere we went people would comment on her hair.  When the doctor called me to finally give me the results of her biopsy and confirmed my worst fears…yes it she had cancer. I remember asking her if her hair would fall out.  I was embarrassed I was asking about something so trivial in the same conversation of “yes your child has cancer.” I was afraid she would think I was vain, insensitive, or just nuts.  She actually responded in such a kind and gentle way.  Yes she said – she would lose her hair.  I acknowledged how ridiculous of a question that was.  I remember her saying “No it’s not…it’s the outward sign of her cancer.”I didn’t feel so stupid after that.

I remember the first night they transferred us from the PICU up to the “bear” floor.  I was walking down the hall with my cousin and a teenager was walking in front of us who was completely bald. I remember that tight feeling in my chest. A stark slap of reality. I am on a cancer floor. I have a child with cancer. I will be the mom of a baldy.

 

I remember cutting her hair short.  Curly Q’s all over her head.  And then the hair started to fall out. Everywhere. It was gross. So we cut it again. Shorter.  A pixie cut.  And yet I couldn’t bring myself to shave it.  She sat in my lap as I pulled the pieces out and with a sharp orange scissor. I cropped it close to her head. I cried.  I tried not to. I didn’t want her to cry too.  She didn’t.  “Why are you crying?” she asked me. I just shook my head and tried to hold back the tears.  I put a thick piece of curls in a lab bag. I wanted to save it. The nurses told me her hair – when it grew back – might grow in differently. I wanted to remember what my daughter was before she was a cancer kid. When she was innocent and naive to the medical world. 

When it was all over she sat on the bed and brushed the locks of hair I had cut. That night I laid in the parent bed across the room while she was in her hospital bed and sobbed.  I remember her leaning over her bed — looking squarely at me and saying “Mommy why are you crying? I’m right here.”  It was if God spoke to me through her at that instant and said “She’s not going anywhere.” It’s one of those moments forever captured in a mental picture in my mind.

Now fast forward 9 months and I am so used to seeing her without hair I am not sure how to react watching the small patches that are slowly growing back on her head.  She had short dark eyelashes.  And just tufts of eyebrow patches.  Her hair before her transplant had started to grow back in a dark buzz look even and all over her head. It was different though. It only lasted a few days and I knew it was going to fall out again as I watched the chemo drip into her over 96 hours.  This time though the hair will stay.  There is no more chemo. It’s done.  She has one day left of radiation and then that’s done.  Her hair will grow back and she will look “normal” again.  Her bald head is a badge of courage everywhere she goes. She doesn’t wear hats or scarves or anything. She loves her bald head and keeps reminding me as I check out the new patchy hair growth that she will be shaving it off as it grows back. 

Right now she has the same hair as her dad. Lots of hair in a horseshoes around the back o f her head. And then a 2 inch tuff off the top.  So my ex and my daughter now share the same hair line.  I have asked the doctors’ 3x will it all grow in or are these bald patches permanent? They keep assuring me it will just grow in at different times but eventually will all grow in. I’m not convinced yet.

And at the same time I have to admit her hair growing back scares me.  It’s a reminder that chemo is over and we are onto the next part of her therapy.  Bio therapy.   I just had the consult with her doctors today and have the consent forms sitting in my bag to sign and bring back on Tuesday.  Bio Therapy (also known as immune therapy) lasts 6 months with 5 treatments.  She’ll go into the hospital on a Monday and stay the week. She’ll check out Friday and then have a 3 week break.  She’ll only need to come back to the clinic 1 x the following week and then only if she is sick.  The kids usually do great at home and after September 9^th (her 100^th day past post bone marrow transplant) her mask comes off and she can start to resume a “normal” life.  ‘

Bio therapy is hard. It’s painful. Really painful. The kids are put on a narcotic drip at admission. 2 of the 5 rounds are done in the PICU from the beginning (because so many kids end up being transferred, they just start them there now) Em will be the 3^rd kid at this hospital getting this particular round of therapy. It’s not FDA approved yet. Kids who make it all the way through increase their long term survival rate 15-20%

I am told they will do whatever they have to do to keep her alive to get the drugs into her. Blood pressure meds, ventilators, ART lines, it’s a race against time.  The medicine goes in over 10 hours. If she starts to react they slow it down. It has to be in within 20 hours. Whatever doesn’t make it in in 20 hours is discarded and you start over the next day.  Obviously the more that goes in the higher her cure rate.  I sign a 14 page consent packet.  Pages of side effects.  All scary. A relapse scarier. I sign away.

I should be excited her hair is growing back. It means the end of chemo.  I’m not.  I know chemo. It’s comfortable. I know what to expect. Bio therapy is scary. It’s new territory. The unknown.  And then when it’s over….you wait. The scariest part of all.  You scan. You wait. You scan. You wait. You try to live without fear and you cherish life in a way most people will never understand.  I guess it’s a choice to be grateful or resentful. I’m not sure which choice I’ll make yet.

Those dark patches of hair represent the “real world.” Shampoo, haircuts, and bows. …they are all part of the “real world.” Washing your 4 year olds head with a wash cloth? That is not.  My reality is skewed. The real world is outside the 4 walls of a hospital room.  The real world, where dealing with “life” right now actually feels more overwhelming then dealing with cancer.  Here the nurses are our family.  The cafeteria my kitchen.  The parking lot my garage. It’s my life.  Hair…that’s not my life.

I look at her dark patchy tufts of hair. I wonder what she will look like. The bald child I see now is not the one I brought to the Emergency room almost a year ago. That child didn’t have nightmares of getting poked. That child didn’t have yellow tinged bruises on her legs that never seem to fully go away from week after week of insulfon needles being placed. That child didn’t have a “diamond cut” scar across her belly or holes where chest tubes stayed for months. That child didn’t know how to draw her own blood back out of a central line implanted in her chest or know that when she is “puky” she wants Atavan and when she is in pain she wants Oxycodone. That child didn’t know the difference between an x-ray, a CAT scan and a MIBG scan.  That child didn’t say “what? What?” all the time and didn’t need hearing aids.  That child had hair.

 I will miss kissing her bald head. I will miss that visible reminder that Emily is different.  Her bald head represents her strength to me. Her will to win. Her courage. Hair will make her like every other kid.  And as strange as it sounds I’m glad she’s not. I’m glad she’s a fighter. I’m glad she’s got a “reputation” for being strong willed and being the only 3 year old to pull out her own chest tube. I’m glad she is young enough to hopefully not remember the bad parts and old enough to remember she is a Miracle Kid and she can do anything.  I wonder how having cancer will mold who she will become. How it will shape her destiny in a way that having hair never would have.  Because even after her hair grows back…however it grows back, light, dark, straight, or curly….she will always be my brave, beautiful, bald kid.  

Reality….here we come.

ART OUT LOUD MUSIC FESTIVAL 2010!

I’M SORRY….

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?”
“Yes Em.”
“Will you wake up and hear me?”
“Yes Em.”
“Will you come get me?”
“ Yes Em.”
“Will you get a me a puke bucket?”
“Yes Em, just go to sleep!”
“ Mommy?”
“ 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.

Wed Night Out with the Girls

We started at Rack & Rye, moved onto DTC for Young Professionals HH, and then back to Lodo for PreGame!

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EVENTS THIS WEEK!!! SO MUCH GOING ON!

So excited for our 1st DINNER AND A MAKEOVER NIGHT in Cherry Creek!

Dinner, Massage, Eye Brow Waxing and a Makeover all for $15!!  Check out the invite link…

http://www.facebook.com/watanabe1?ref=search#!/event.php?eid=139655412721873&ref=ts

Behind the Moon Networking Event at Indulge Wine Bar!

If you’ve been wanting to network with me here’s where I’ll be!!

http://www.facebook.com/watanabe1?ref=search#!/event.php?eid=127160653996097&index=1

RiNo Music Festival!  I am sooo excited for this ! Great CO bands for a Fantastic Cause!
Get your tickets here!

http://denverartsociety.org/projects/artoutloud

SUNDAYS ARE BETTER WITH SAKE

IS THAT GRIEF I FEEL?

WRITTEN 7-1-10

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 4^th 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 1^st 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 1^st 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.

Point taken.

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 8^th 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 1^st 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 4^th 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.

Sometimes I think if there was a third sex men wouldn’t get so much as a glance from me. ~Amanda Vail