Is Driving Scarier Than Cancer?

Today is a day I prayed for, dreamed about, visualized, and mentally willed into creation. It was at a time that today seemed so far away. It was more of a hope and a wish for a future that statistically had little chance of happening. It is the day Emily will get her driver’s license.

In a children’s oncology ward with my 3-year-old hooked up to tubes, IV’s, and broviacs, I would talk about the future. I would visualize the future I was praying for regardless of what the stats told me.

 I vividly remember telling 3-year-old Emily how cancer wasn’t going to be as scary as the day she got her license. I remember laughing and telling her how for “Mommy” that day was going to be waaay scarier! I wanted her to picture her future. To not give up fighting for her life because of the pain of the present.

It was at a time when I knew her will to live was paramount to her survival. 

In full transparency, that day seemed like more of an imaginative place so far in the future I couldn’t even feel it.  Most of the time I just prayed she would live until 7, the age a relapse was unlikely and I could finally resume breathing like a normal human again.

But 17?  Ten years beyond that? It was risky to ask for.

We are told in James 1:6 “But when you ask, you must believe and not doubt.”   The message translates that to, “Ask boldly, believing, without a second thought.”

It was bold to talk about the future as if it was a done deal. It was bold to stand in defiance of the facts.  It was bold to confidently paint a future for a child that she might never see.

I was scared, but I was bold. Bold is from an old English word that means “stout-hearted, brave, confident, strong.”  I believe we can be scared and brave. We can be scared and confident. We can be scared and strong.

Today I am scared and strong. Today I stood in the waiting room just after she passed her driver’s test and went in to get her license. A big sign on the door said parents and instructors had to wait outside. I did a double-take. “Wait, I can’t go in with her?” I had to hand her all of her 6-point identifications and send her off to a government agency without any windows to even see who she was talking to and just wait?!??!  As my mind struggled with this new independence I realized getting her license is more than an answered prayer, it’s a bold step into adulthood.  A world without me standing as her advocate by her side.  A world where she will need to stand boldly on her own.  I fully admit I have struggled with the idea that I might not get to be her college roommate and I might actually have to cross a state line to see my daughter. And that actually might not be every day or just whenever I want. 

How did I foreknow 14 years ago sitting in a hospital bed praying daily for my daughter’s survival that the day she got her license would be scarier?  Not just because she is driving and NJ drivers are insane, aggressive, and think 55 is really code for 95, but because it’s an inch (or giant leap!) into adulthood. At least in the hospital room, I was her voice. Now she gets to speak for herself.  In the hospital room, I made all the decisions. Now she gets to make decisions.   How, in the midst of uncontrollable cancer, did I feel more in control?

So today I am filled with gratefulness and sadness. A strange and confusing combination of emotions that have settled into the pit of my stomach.

Sadness that every day is one day closer to her living a life as a grown-up. Where she will have her own house, her own family, and she will “visit” me and not live with me.  My heart aches even as I write this.

And gratefulness that today is the day that is scarier than cancer. Today is the day we dreamed of, prayed for, and laughed about.

Today is a reminder of just how far we’ve come.

Today is the day my miracle kid got her license.

An Emotional Day and a Great Big THANK YOU!

Today is an emotional and exciting day for me.  On January 2, 2017 I created a Go Fund Me page at the encouragement of some friends and after a lot of prayer.  See, I wanted to write this book. A book I felt God calling me to write, that I really didn’t want to write, but that I knew could help other families facing a childhood cancer diagnosis.

I was still broke and trying to get back on my feet after 6 years going through a domestic violence divorce, Emily’s cancer, and a move across the country to be closer to family. I was rebuilding my business, living paycheck to paycheck, and while I had enough money to cover my bills, I didn’t have the thousands of dollars it was going to take to publish a book.  See, I didn’t just want a book. I wanted one that was beautiful to look at and read, one that had pictures of our journey, and would inspire hope in the reader’s heart. I was going to need an editor, a graphic artist, buy an ISBN number and purchase initial copies to give out.  

We raised almost $4,000 and one of the first people who donated was my daughter’s surgeon. I cried.  People believed in my vision.

Many, many, many people encouraged me to start a nonprofit instead.  I knew that was not God’s plan for me.  See, there’s already a teeny tiny pot of money available for the childhood cancer world. I didn’t want to be sticking my hand in there too. I wanted to be giving to that pot instead. I knew companies like Amazon, Apple and Disney were able to make huge contributions to those very nonprofits because of their businesses. I wanted to be able to do that too. I started by doing lots of Buy one Donate one events and donating books to families and hospitals. I committed to donating a portion of the proceeds from MCF book sales to support nonprofits that make cancer fun for children and their families. 

Now Making Cancer Fun isn’t Amazon or Apple (yet!)  but today marks a significant day. Today marks the day I can give my first real donation. And I am so excited about the nonprofit chosen.

Out of Zion is a free creative arts program for children with medical and special needs. Kosj and Jaymi created this program in honor of their beautiful son Zion, who fought an aggressive brain tumor for one year before crossing over to be with his Creator. Zion loved music and creative arts, always singing along, dancing and exploring any instrument he could get his hands on. Out of Zion was born out of a calling on their family to extend the love, joy and faith that their son embodied. Kosj and Jaymi know first hand what it is like to have a child facing a difficult diagnosis and medical treatment. Their desire is to create a joyful and supportive environment for children and their families who are fighting similar battles while carrying on Zion’s legacy. Through Out of Zion,  Zion continues to inspire and bring hope to children, parents and entire families who need it the most.

Now many of you might not know, but my background is in theatre. At three I wanted to be a ballerina. When I hit 5’8″ at thirteen I decided instead I wanted to be an actress. I went to college, majored in Drama and my first job out of college was with a touring children’s theater.  Out of Zion combines my two loves: making cancer fun for kids and the arts. I can think of no better way to honor God (who I believe was preparing me for making cancer fun from that very first improvisation class) then to support a beautiful, impactful organization, and a family that stands for everything I believe in.

So whether you have purchased my book, shared a post, left a review, or just prayed for me along the way, THANK YOU. Thank you for believing in me and my vision, Thank you for believing FUN is a viable and important coping skill. Thank you for being part of this journey.

This is just the beginning. I have a second exciting product coming out (hopefully this spring!) and it is my prayer each new product will bring more revenue to give back bigger and bigger each time, supporting lots of nonprofits along the way.

So while $300 may not seem like much, for me it’s huge. Like Confucius said, “The man who moves a mountain begins by carrying away small stones.”  This is my small stone.

PS Here’s a peak at the work they do:

Going Big After Starting Over ~ New Podcast Post!

This was one of my most favorite podcasts I’ve been interviewed on! We went where the conversation led us and it really gave me some “ah ha” moments!

You might enjoy this episode if you:

–Have overcome hardship in your life but still find joy

– Are currently going through a hardship and need a silver lining

– Believe that everything happens for a reason and you love seeing things come together for a greater purpose

If you are struggling this season or finding yourself stuck in life I hope this will bless you!!

You can catch it on the podcast link below or or watch it here on you tube:

Real Talk with Krysta – Episode 2: Your Weight Doesn't Determine Your Worth – Women Going Big

Happy Thanksgiving! Today's episode is brought to you by diet culture telling you to not eat those mashed potatoes tonight. I'm here to tell you to eat the damn mashed potatoes! But for real, your weight doesn't determine your worth. Don't give numbers so much power. 

1. Real Talk with Krysta – Episode 2: Your Weight Doesn't Determine Your Worth 28:17
2. Real Talk with Krysta – Episode 1: Let's get Real 21:39
3. Women Digging Deep: Rising Above Against All Odds 37:07
4. Women Going Big in Business: Taking Care of Yourself First 34:26
5. Women Digging Deep: Finding Your Personal Power 37:12

Alittle bit about Krysta!

Krysta Paffrath is the owner and founder of Women Going Big, a podcast dedicated to sharing the stories of ordinary women doing extraordinary things from around the world. She is also the owner of her own social media agency, and co-owner of a full service marketing firm. In her journey through small business and entrepreneurship, she discovered the need for women’s voices to be heard in a true and authentic way. Thus, Women Going Big was born. She is on her second season of the podcast and is looking to expand the platform to create a community of strong women who are “going big” in some aspect of their life. I encourage you to connect with her on Facebook, @Krysta Paffrath (personal or page) or find her podcast on Instagram @WomenGoingBig

Fear, Faith and a Facebook Post

“What I have learned from Covid ……. the superhuman power of FEAR.
I always viewed fear as a both positive and negative motivator.  My eyes have been opened. If I wanted to destroy a person, their family, their livelihood, their future, their nation I would use fear.”

~ Linda Toupin.

I woke up this morning to this post by one of my favorite and most influential mentors. Openly, I was surprised that she had previously viewed fear as positive (and relieved to hear her heart has changed on this stance).

I have learned a lot about fear over my life and what I can confidently say is, fear keeps us from our best self. It cripples us. Paralyzes us. It stops our brains from working and puts us in reaction vs response mode. It causes health issues and, in some cases, can even kill us. As a Christian, I believe fear is the tool Satan uses to keep us from living and experiencing all the blessings God has planned for us.

We are told Satan can’t change God’s will for us, but we can. So, what’s the best way to get to us? Fear. (and fear that is usually based on lies)

• Don’t quit the job you hate because what if you never find another one?
• Don’t donate that much money to that cause because what if you are short on cash next month?
• Don’t say “yes” to trying that new business because what if you fail?
• Don’t speak up against the wrong you see because what if everyone turns on you?
• Don’t break up with him/her even though they treat you poorly because what if you never find anyone else?

I wonder how many of us (myself included) have missed out on huge blessings simply because we were afraid?

The word “fear” comes from a number of root words but the one I find most interesting  is from the Old Norse word far which means, “harm, distress, deception.” DECEPTION.

Fear is used to deceive us. (From a biblical standpoint Satan is referred to as “the deceiver of the whole world” Rev 12:9) Fear stops us from thinking logically and rationally about a situation. And it has dire consequences.

Some might argue there is “healthy fear.” We are afraid to stick our hand into a fire, (keeps us from getting burned). We are afraid of heights, (keeps us from falling). We are afraid of creepy crawling things, (keeps us from getting bit or stung). I would venture to say that’s not the same fear we are talking about. Are those examples of fear or simply examples of common sense? I don’t want to get burned, fall, or stung, so my brain logically tells me …hey don’t do that.

That’s entirely different than my body being in a constant state of fear with unnecessary adrenaline running around throwing off my nervous system, switching my brain into my non-rational flight or flight mode, and disrupting my immune, endocrine, and nervous system (and that’s just to start).

No wonder why Satan uses fear to cripple us. It weakens us mentally, physically, emotionally and most importantly spiritually. The famous saying, “faith and fear can not exist together” now makes more sense. We can’t hear God when we are deaf with fear.

What’s worse, is most of us use fear daily to control those around us. I admit I currently use the fear of losing her cell phone to “control” my daughter. (Things like, “If you don’t do XYZ you are losing your phone for a week!” may or may not be heard in my home on a regular basis). Maybe a boss uses fear to control his/her employees. Or a teacher uses fear to get his/her students to pay attention. And certainly fear is used in intimate relationships at an alarming rate in our country (https://ncadv.org/statistics)

Today’s world surrounds us with fear. Fear that is being used to manipulate and control us. (long before Covid, the election, or 2020). The daily news, in my humble opinion, is the greatest source of fear-feeding. I recently posted that waking up and looking at the news is like waking up and asking, “What’s all the horrible stuff going on in the world today?”

Now, I’m not saying we should live in ignorance. I am saying we need to balance that fear with faith. Faith in humanity, in each other, in ourselves and in God. For every scary fear-filled news story there is one of hope, love and faith. (https://www.goodnewsnetwork.org/)

I wonder what would our lives be like if we didn’t live in fear? If we truly stepped into faith every day? Would we walk haphazardly down the street into oncoming traffic? Swim in the ocean when the red flags are up? Start collectively telling off our bosses? Probably not. Faith doesn’t mean we are stupid. In fact, it’s the opposite. We are told “God has not given us a spirit of fear, but of power and of love and of a sound mind.” (2 Timothy 1:7). Some versions translate sound mine as “good judgement” or “self control.” All things I want.

God tells me he has plans for me …plans to plans to prosper me and not to harm me, plans to give me hope and a future, (Jer 29:11 and the verse I claimed for my daughter during her cancer treatment). And guess what? That’s His promise to YOU too!

So we get to choose. Will we stand in the TRUTH of God’s promise to us or the FEAR of Satan’s lie to us?

I’ve lived through fear. Fear my ex-husband was going to kill me. It wasn’t “perceived fear” or “fake fear” it was real logical fear of a man who graphically described to my daughter how he planned to kill me. I slept with my windows locked, security system on and adrenaline running through my body 24/7. I also experienced “real fear” when the doctors told me my daughter probably was going to die and had one of the lowest cure rates in the childhood cancer world. And even recently another “real fear” I am not ready to go public with just yet. So yes, I get fear can be “real.”

But, here’s the thing. Fear is also a choice. Faith is a choice. And like resiliency, it’s a muscle we can exercise and build. It was much easier for me to move from fear to faith with my daughter’s cancer (like a 2-minute turn around!) because I was already building that muscle super strong during my divorce. Now, was it a one-time decision? I regretfully admit, no. There were more times than I can count where I was dealing with her cancer and my ex-husband endangering her life that my “lizard brain” took over, I went into full reaction mode, and would physically shake with fear. Now, looking back, I realize how much power I gave away in that reactive response. And how much of a foothold I gave the devil.

I’ve seen the power I have when I choose faith instead. The energy around me physically changes. My mind becomes clear. My heart peace filled. My feet grounded. I feel strong, capable and competent. That is the power of faith. That is the power of a God-filled spirit moving through me…or you.

As we move into what will probably one of the most difficult seasons our country has faced in many years (between Covid, the election, the reopening or non-opening of schools and a looming financial crash) we each have a choice on how we will wake up every morning and face our day. We will choose faith or fear? (Remembering that fear is usually based on lies, deception, and manipulation.)

It is up to each of us to choose wisely.

THIS IS HOW WE DO THINGS IN JERSEY…..

Monday Emily had her MRI.

The 1st of 3 long days of testing to finish her cancer treatment. We’ve been visualizing, praying, waiting, hoping and anticipating THESE 3 DAYS since she was 1st diagnosed in November 2009. It seemed so far away at the time and now it’s here. I can barely contain myself. It signifies victory, success, and hopefully the beginning of normal although I am still not entirely clear on what that means.

I can unpack the permanently packed hospital bag full of toiletries, sugar free lemonade packets and the bible I took from the hospital chapel in a moment of despair (you are allowed to take them…even in my despair I checked….) I will not be scheduling any more over night hospital visits and Emily will only go for checkups now. I always remind people she is not in remission least they think they are free to stop praying for her. The next 18 months are critical. June 2 2012 that’s the date we are waiting for to be in the clear. As for now we are celebrating her victory for being one of the miracle kids that gets to the end of treatment and increased her cure rate almost 30%! What a little warrior she is.

As I’m sitting in the waiting room while she’s under anesthesia a family I know walks by.

“Tara what are you doing here?”

“I’m waiting, Em is having an MRI. We’re doing her end of treatment scans. Why are you here?”

And then the world stops for a moment. D, their 3 year old daughter who Em & I saw almost every morning while they did radiation therapy together at University hospital, has relapsed. She was done, months ago she finished therapy. Her broviac (central implanted IV line) had been removed. She was home. Life was going on. Then she had an ear ache. Well it was just an ear ache, quick trip to the doctor. Except they couldn’t see inside her ear. Weird huh? They open behind her ear. There’s a mass. It’s testing postivie for cancer. A blood cancer. But her blood is testing clean. Everyone’s stumped. One of the leading cancer doctors in the country can’t explain it. Frustration and fear written all over their faces.

It’s a moment like this that reality bites. Cancer kid parents seem to agree. We ache more for each other’s kids then our own. Maybe it’s because mentally we don’t go there with our own kids. We don’t face the reality of the fatality of their disease. But when another kid relapses it triggers that emotional fear…that could be my kid. The pain I feel for this couple. It’s empathy to the 10 degree. You’ve been there too. You know that fear of that first diagnosis. The shock, the grief, the anger, the fight with God. Then the acceptance, the fight, the will to kick cancer butt. Then victories, infections, trips to the PICU, vomiting, mucasitis, narcotic drips, IVS, surgery, tears, clear tests, cheers, success. The inner voice edging you on…she’ll be ok…my kid is one of the winning statistic. And then when you hear there is a relapse, it stops.

Is this worth it? Putting this tiny body through a living hell to gain a year?

I cry for them. I cry for D. I cry for the kids I personally loved and their families that lost the fight. I am scare and guilty at the same time. Guilty Em is here cancer free and D is not. Why does my kid get to the be miracle kid? I’m celebrating the end of treatment and I’m sorry because they are now standing in front of the next mountain. You can just see the tiredness written all over them. Tired of fighting. It’s not a physical fight it’s an emotional fight and some days there just isn’t any left.

They have to go. I have to go. We say good bye. I pray for D. God is the only one I know to go to go. And then the fear sets in.

I came today in victory. Em is done with treatment. She won! She’s my sassy jersey fighter! And now I’m paralyzed in fear. Guilt has suddenly been surrounded. An army of “what if’s” storm into my brain. What if it’s back? What if she’s just like D, Z, A, M, and A? Children who were the bravest, most heroic cancer warriors who lost. No! I scream in my head. I mentally take control of my thoughts and fight back (once again) I will not let those thoughts take control. I feel sick. The RN comes out Em’s in the post op room (they sedate kids for MRI’s)

I go in. I’m trying not to shake less the hospital staff thinks I’ve suddenly become a junkie on my 1 hour break. She’s laying there. This tiny little body on a huge operating wheelie bed. Side bars up, a blanket over her, the blue foam head cushion under her. Her eyes closed, breathing steady. The RN says the MRI went great and confirms they put the catheter in for her next test.

I sit. I think. I try not to think. I stare at her. What if there is cancer in her? What if it has snuck back in and is secretly plotting its human take over? What if all this was for nothing? What if she is just another statistic? She looks so good. Her hair is back & she doesn’t have that long yellow spaghetti like feeding tube sticking out of her nose anymore. She looks…well normal. I remind myself for 6 months she looked normal while cancer was slowly taking over her body and killing her without me knowing. Again I argue with the fear that torments me.

My friend calls to check on Em. I say she’s sleeping. Should I tell him? Should I tell him about D & that I’m scared & that I want to throw up & run out of here screaming with my hands over my ears. I usually don’t tell people I’m scared. I don’t want to put that into the universe. But today I do. With my voice shaking I tell him about D, about talking to her family, about her relapse, about my fear.

Now I know for someone who doesn’t live in the cancer world this is a lot to take in. I barely know what to say to a family when I hear their child has relapsed and I live it. So really can I expect this poor non 7th floor living, non chemo puke cleaning, non hospital eating, sleep room showering, IV pole pushing, CBC reading human to even know what to say? I almost feel guilty for putting him the position of feeling like he has to respond. Should save him the uncomfortableness? The “sorry for your kid I don’t know what to say” moment.

“D isn’t Emily.”

That’s it.

That’s all he says.

That’s all I need.

He’s right. She’s not.

Relief literally crashes over me like a wave drowning me. I sink into the chair. I feel like I just ran a marathon.” D isn’t Emily. D isn’t Emily”. I repeat it to myself over and over.

I’m sorry for D. I’m sorry for her family. My heart aches for them. I look at Em. She isn’t D.

She is cancer free. She is my miracle kid. I won’t have the tests back for a few days and yet suddenly the fear is gone. The fight is back. My jersey kicks in. What was I thinking? FU cancer. You’re not taking my kid. She just kicked your butt Jersey style. Get used to it cancer. I might be sitting in Aurora CO…..but this is how we do things in Jersey.

It’s a Girl!

Emily doesn’t love me.

At least this is what she tells me on a regular basis.  Followed by she hates me, she never wants to see me again, I’m mean, I’m stupid, and the list goes on.  (Now I could go off on a tangent as to where she hears this kind of talk but I’ll leave that to another blog…)

Coming from a 14 year old I would be mentally & emotionally prepared that this is a string of hormone induced ridiculousness of a teenager exerting their control & independence in the world. But at 4! Nothing has prepared me for the string of hurtfulness and anger bursting forth my 4 year olds mouth.  I secretly wonder if this is pay back for every mean thing I ever said to my mother. If it is, I better fasten my seat belt. Knowing my mouth, I’m in store for a long bumpy ride.

Reasons Emily does not love me:

• I won’t let her eat a marshmallow for breakfast
• I made her take a bath
• I won’t let her buy Yoplait yogurt at King Soopers. She wants peach yogurt. I point out all the organic, nutritious, non-chemical laden peach yogurts she can have. She wants Yoplait (maybe because the package is pink or maybe because she just wants to torment me) “It’s junk” I say calmly. “You can’t have it.”   “I don’t love you. I want to eat junk. I want to be sick!” she defiantly says with her hands on her hips.
• I make her take her Retinoic Acid pills. And then tell her “No” when she goes to spit them out after only holding them in her mouth & not actually chewing them to get the medicine out.
• I made her wear her coat. It was 54 degrees. Yes, I’m a mean mom.
• I won’t take her for High Tea after she screamed on the top of her lungs in heritage square so loudly the daughter of my friend Anne actually covered her ears. Oh that and she started smacking me for talking to Anne.
• I won’t cook her pancakes at 8:30 at night after I just made a veggie quiche, a Mexican quiche, and two homemade deli style baked sandwiches and cleaned the whole kitchen.
• I won’t leave Aunt Chrissy’s house within the 1^st 15 min of arriving to see my Uncle Frank & Aunt Valentina who I haven’t seen in over 5 years. (after an hour fit I finally was tortured into leaving early anyway)
• I won’t take her to Casa Bonita after she got in the car & started screaming & whining in her words “just because.”
• Every time I won’t take her to Starbucks to buy a strawberry banana $4 smoothie that she takes 2 sips of, a fruit & granola $4 yogurt parfait she takes 2 bites of, a $3 green machine she takes 1 swig of, or a $5 bowl of fruit she chews a half of piece of.
• I make her clean a broviac when she does take a bath. And I scrub the full 15 seconds with the alcohol Cloraprep that burns her skin so it doesn’t get infected (ok this one maybe I understand)
• I cut her toes nails. (although in my defense this is such a fight it is only after they become daggers that literally could impale a person resulting in death if she kicked them)
• I won’t let her eat chocolate cake for dinner.
• I push her Acyclovir anti-virus medicine thru her tube 3x a day. 
• I can’t read her mind to know which song she wants to hear in the car when she sings “if you… dum um um um…you know mom! You know!”
• I tell her she can’t scream every morning when she wakes up just because she wants to.
• I made her put her blood pressure cuff on in the Intensive Care Unit. She screamed “I want my dad” and then told the RN to call him because once he got there he wouldn’t make her put the cuff on.
• I wouldn’t buy her 2 Bernstein bear books, only one, at Tattered Covered and she NEEEDED two and HAD TO HAVE two and when she threw herself on the floor in a fit we left without any books and I carried her 4 blocks down 16^th street mall with her screaming and flailing herself around while everyone we passed starred & I’m sure judged me as to why I couldn’t control my child (well at least the ones who never had kids anyway did)
• I won’t change my plans in the middle of the day to take her to Chuck E Cheese, Mr. Biggs, the Bounce Place, tattered Covered, The Art Workshop, Red Robin, or wherever else she decides on the spur of the moment she just HAS to go to.

 

And the list goes on.

• I make her wear her orthotics.
• I won’t turn the radio up to a blasting level so she can hear it because she refuses to wear her ear jewelry, hearing helpers, hearing aids or whatever other term we’re currently using to make them seem fun.
• I make her brush her teeth. 2 times a day!
• I won’t let her open the car door when she’s having a fit while I’m driving. (Thank you Kwan for showing me how to child lock the doors!)  
• I make her get dressed. In clean clothes.
• I make her wash her face, wash her hair, and wash her hands on a regular basis.
• I make her take her meds, drink her vitamin juice, and flush her IV lines.
• I won’t let her play play dough on the living room carpet without a mat. (She explains her dad lets her play play dough on the glass table over the carpet. I tell her when we have a glass table she can do that here too)

 

Is it because she spent almost a year in the hospital getting catered to 24/7 that she now can’t “deal” with the “real world?” Is it because every time she did get to leave the hospital for a few days at a time we made a big deal to do lots of fun things that now she thinks every day is a “special day” for a special outing, gift, treat, or adventure? Is it because she deals with the same inconsistently every child of divorce likely faces where there are rules at one parent’s house that aren’t at the others? (She reminds me on a regular basis there are no rules at her dad’s. And then every time I tell her “No” she demands I call him and take her there. Now outside of the obvious, I can’t call him because I have a protection order against him because he wants to kill me but I can’t really explain that to a 4 year old. So I just say “I’m sorry Em, that’s not how it works. You’ll see your dad on….” Which just ignites how mean, stupid, & nasty I am and how much she doesn’t love me.  Or is it because this is the cycle of pay back in life? Your parent’s sweet revenge.

 I remember when the Doctor 1^st told me I was having a girl.  NO! I thought! I can’t have a girl. There is only 1 crazy woman in my house. ME! I can’t handle two! I know me. I couldn’t even live with girls in college.  I refused to accept I was having a girl. I picked out a boy’s name, boys clothes, and a generic nursery set. People excitedly would ask the age old “What are you having?”  “The doctors say it’s a girl but I’m having a boy” I would respond. After all, I was sick and my mother was only sick with boys.  My skin was breaking out & my non-scientific study in the skin care market for almost a decade would indicate a boy. And most importantly girls were too mentally and emotionally challenging for me. God wouldn’t give me a girl.  As the doctor pulled her out of my belly in a very unplanned c-section the1st thing I remember asking was “What is it?”  “It’s a girl!” to which my ex husband leaned over and said “Do you believe them now?”

A girl. She was the most beautiful creature I had ever seen. A girl. Pinks & purples. Dresses & bows. A 4 year old with a purse fetish and me, her mom, who would rather pull off my toe nails then go shopping.  A girl. Cliques and sleepovers and cattiness, and BFF’s.  Girl scouts, dance class & gymnastics (oh who am I kidding that kid will be waaay too tall for gymnastics). A girl. A gender that has a rare mutation where a phone can stay attached to their ear for hours and hours, days and even months without discomfort. A girl. Dating and boys and prom dresses and 1^st kisses, and pregnancy and STD’s and date rape.  It’s been said that when boys get mad at each other they just beat each other up. Girls give each other eating disorders.

Of course shouldn’t have been worried. After all, I’m a better mom then my mom. I have it together. I’m more emotionally stable. I am not a product of some crazy 60’s hippy generation. I’m an 80’s baby.  Capitalism, Self Sufficiency, and Success at its finest.  I have read “Love & Logic,” “Babywise,” and “Principles of Success.”  I will run my home and my family with the same ease, efficiency, and effectiveness I have run a $300K+ business. I remind myself I mentor hundreds of women around the country.  I work with women every day!  I have lots of girlfriends who I adore and love!  One little girl can’t be that hard. I will be the model mom. She will always be neatly dressed in well matched clothes & a cute bow in her perfectly groomed hair. My house will never get dirty, my dishes will clean themselves & my laundry will fold & put itself away. My car will not have cheerios, juice boxes and diapers spilling over in the backseat. I will always have a fully stocked diaper/kid bag in my trunk with everything I might ever need or want at my finger tips. Nutritious Organic home cooked meals will miraculously appear on my dinner table every night.  The color coded calendar on my fridge will reflect a life of balance with church time;  personal time for yoga, prayer, friends, and happy hours; work time where I will have more than enough emotional energy & stamina to grow my business to my $1million goal; and a equal balance of activities to nurture a young creative growing mind, play dates, park outings, library programs, nature programs, and seasonal children’s events which  I have carefully selected out of kidspages.org to foster intellect, creativity and physically activity. 

Then, of course, Emily will grow up singing my praises about how blessed and lucky she is God chose me to be her mom (as I remind myself regularly when I am on my knees begging God for grace & patience).

Oh how I wish I lived in my fantasy world.  Where even as I type this I can hear birds singing in the background, a happy dog barking (not that yappy devil dog that lives next door that I want to bunt kick across the cud-a-sac because it barks 15 hours a day when it’s owners leave it outside and they are nowhere to be found) but a cute happy dog. And somehow there is magically a stream flowing in my backyard and fish jumping up to dance.

Back to reality. It’s 5:30 am (which in my world is the middle of the night) and I am wide awake because Emily woke up an hour ago screaming that she wanted  “drish.”  When I couldn’t understand …did she want gold fish? (was she hungry?)  did she want to come lay in my bed? (Maybe she was saying “dred?”) Which just made her angrier until I finally deciphered “my drish” into” my dress…” which really wasn’t a dress at all but my black and white silk shirt that she has recently become attached to “the one you wear ALLLL the time!” she screamed at me (for the record I think I’ve worn it once in the last 4 months.) and then rolled herself up in it and went back to sleep.  And now here I am typing & wondering how did my life get here.

We go to therapy tomorrow at 2pm.  I think we both need it.

I THINK I HAVE A SPECIAL NEEDS CHILD….

I think I have a child with special needs.

 I say “I think” because I don’t want to say it at all. I don’t want a child with special needs. I want a child who had cancer, kicked it’s butt, and now is “normal.”  Yesterday Emily came with me to the post office.  I walked behind her.  All arms and legs, 4 years old and just 33 lbs and super tall. (So far radiation has NOT stunted any growth!)  Lanky and skinny.  She bounded in with a nose tube hanging out of the right side of her face which is 2/3’s covered by her BMT mask that is her shield against the world of germs, her right arm wrapped in CoBand, tucking in the 2 new Pic Iv lines that will stay there until December, her sneakers bursting at the sides from her new orthotics that come up around her ankles and her 2 new hearing aids on either side of her head.

The orthotics have animal prints on them. I tried to make it fun that she was stepping on a monkey with each step she took.  So between the jungle print orthotics, the hot pink and orange “ear jewelry,” (her choice of colors), her neon pink CoBand wrapped around her arm and her bright turquoise mask the kid is quite a fashion statement. As I watched her it was the first time I saw her as a kid with special needs.  All those flashing colors proclaiming to the world….I am not “normal.”  I have ….ugh my stomach turns as I type this….”disabilities.”  It was almost as if for the 1^st time I saw her as other people see her. 

It’s strange that in almost 9 months I have never seen her as a “special needs” kid.  Even though her bedroom looks like a medical storage room…bins of syringes, Tagaderm tape, a huge “Tree” pole for her feeding pump, backpacks and pumps for her TPN, bottles of saline, heparin, sterile water, and more creams, lotions and drugs then a pharmacy.  Still it’s just her room. She’s just my kid. It’s just part of cancer. And it’s not forever. 

Today forever hit.  Even when cancer is over the effects are not.  “Long term side effects” It’s something you don’t hear about much while you’re going through treatment.  When I ask about them I get vague generalities.  Partly because no one knows (I mean really, this is the 1^st generation of kids who live through cancer to HAVE long term side effects) and also, I think, because everyone is all too aware of the reality is she may not be around to have long term side effects. Why worry about that yet? Let’s hope she HAS long term side effects that you’ll have to deal with.  This seems to be the general consensus.  Any side effects are worth survival.  Long Term Effects = Life = Victory.

Of all the things this kid has gone through, of all the “badges of courage” she has ( 2 chest tube scars, the “diamond cut” across her abdomen, the small pencil eraser shaped scars that cover her chest from various stitches, lung surgery and biopsys) The hearing aids bother me the most. Maybe it’s because I can’t put a shirt over them.  Maybe it’s because without hair and their bright neon color they scream “I CAN’T HEAR!”  Maybe because it reminds me every time I look at her  I hate cancer. Maybe it’s because I don’t want her to have long term side effects. After all, she’s my Miracle Kid. Miracle Kids don’t have long term side effects. Or maybe that’s what being a Miracle Kid means.  You get to have long term side effects because you lived. You survived. And you were victorious. 

I wondered how many people were looking at her as she bounced her way into the post office totally oblivious that she is different. That she is now a “special needs” kid. 

We just got her ear jewelry this morning.  9 Am. Her, me, and her dad. All in one room. (That in and of itself is blog all it’s own).  I have to say at least they really do look like “jewelry.” We’ve gotten so used to calling it ear jewelry  that when the audiologist handed her a book about an Elephant and his hearing aids the words “hearing aids” through me off…..wait, I thought we were getting ear jewelry…hearing aids just do not sound as fun or as cool.  Fortunately she is 4 …hot pink and orange ear jewelry is cool.

And then, Stephanie came in the room.  She works at the hospital in the audiology department and talks to all the families when they come in to actually get their hearing aids. I never really caught what her actual job was.  Maybe, hospital Angel?

She has a hearing aid. In one ear. In the other, a Cochlear implant.  You can’t see them. Her chin length bob covers them.   Other than her speech she “looks” normal. She’s pretty.  Very pretty.  I’m sitting there as she is talking to me thinking “Wow she seems so normal.”   Then I think “Why would I think someone hard of hearing is not normal?” I have no idea.  And I have to admit that I guess subconsciously I do.  I must if I was surprised she WAS normal.  She has a wedding ring on. Someone married this woman!  I wonder what her husband is like. Does he care his wife is….

*ok wait, I don’t even know the politically correct term….Hard of hearing?  Hearing disabled? Hearing impaired?  Part way deaf!?? …I guess I should find out because now it describes my daughter…I decide I’ll Google it. 

I am shocked by my ignorance.  I am relieved she is married. Someone wanted to marry her. Maybe someone will still want to marry Emily even if she can’t hear.   Here is this beautiful, well dressed, married, well spoken, put together woman. And she has a hearing aid!  Doesn’t seem to affect her much.  She pops it and out and shows Emily.  Like it was an earring.  I wanted to ask her if she went to her prom.  I mean getting married is one thing…by the time you get married I would hope people don’t care about a little thing like a hearing aid. But the prom? Will Em be the 6 foot 3 inch dateless deaf girl who needs to take her cousin to the prom?  Will she need to wear orthotics with her flat shoes because she’ll be too tall to wear heels?  And we will have to have the hair dresser try to style her hair to cover her hearing aids and have to find a dress that covers the blue veins that come up her chest to her left arm because of a clot her broviac left?  I have this horrible mental picture of a promo photo of Emily. The only thing worse is that for some reason I also picture her in head gear and a mouth full of metal.

I am a terrible person.

My child has fought for 9 months to kick cancers butt.

She has endured weeks of NPO (nothing by mouth) crying that she was hungry.

She has endured months of having ac chest tube tying her to a bed and scared to take a step.

She has endured physical therapy, occupational therapy, breathing therapy.

She has endured an 8 hour surgery where the picture I have would never be equated with a human being – just blood and guts everywhere except for the belly button at the bottom reminding you this is her STOMACH!

She has endured internal mucasitis soars running from her mouth to her butt so painful she was on a narcotic drip.

She has endured cyclical vomiting – puking every 15 minutes for 10 days and getting acid burns on her chin from the vomit.

She has endured 104.5 fevers being packed down with ice, ER admissions, twice daily injections into her skinny little legs and dressing changes all over.

She has endured a week of bio therapy with blood pressures 50/20 in the PICU.

And what I do care about?

 Getting her a prom date.

Really I am sure my thoughts alone are offensive to every special needs family and child out there.  Am I that vain? I did pray when she was in my belly that she would be pretty. That she would not look like her Aunts on her dad’s side. (They look just like her dad…except they are women…)  I will defend myself  by quoting a new study that shows pretty people actually make more money than non attractive people.  (And hope nobody mentions Bill Gates)

And now as I watch her I realize she is not normal. She is beautiful. She is funny.  Everyone in the hospital who meets her loves this kid. She has a reputation. She is more self assured then any 4 year old should ever have to be. And she is a child with special needs.

Maybe, just maybe, somehow her special needs reflect on me and threaten me since, after all, I seem to be the only one with the issue about her ear jewelry.   She does not seem to care.  I tried to make it fun.  I told her I was jealous – I wanted ear jewelry – I asked to borrow them – asked if I could get a matching pair. She told me no.  I begged the audiologist. She told me no.  I told her C & A (the two other kids with the same Neuroblastoma and same therapy) didn’t get ear jewelry. That it must just be for Miracle Kids and not to tell them because they would be jealous.  Then I dramatically gagged and told her longer she wears them the more ear wax I would have to clean off  and that I couldn’t handle the gross stuff like she could.  She loved it and said she would wear them all the time.  The kid LOVES to gross me out. Other than trying to get used to how they feel she doesn’t seem to care at all that her ear jewelry makes her different.  She does double check to make sure I took the orange “necklace” with us because she wants to wear that jewelry too. (It’s a string that hooks to the back of the hearing aids and clips to the back of her shirt so they don’t fall off or get lost. They are really more for babies but Emily loves jewelry and to her it’s just another “accessory.”)  I mean really, this is the same kid who is begging me to shave her head now that her hair is growing back in and she doesn’t want to have to wash it.   Hot pink & orange in her ears is nothing.

The mask will come off next week.  The nose tube isn’t permanent.  The Pic Line is until December. And even her broviac will eventually come out.  Her hair will grow in and cover her hearing aids and in the winter she’ll wear boots and you won’t see her orthotics.  All the “externals” will change.   She will look “normal.”   Although, I’m not sure what that means any more.  

She was so angry the other day playing outside with the neighborhood girls.  She couldn’t keep up with them on their bikes.  She was frustrated that her legs tire more easily. She started crying. I held her & cried  with her because she wasn’t as “strong” as them.  My kid who is kicking cancer’s butt. Cancer that kills even the toughest of men.  That stumps even the smartest of scientists to find a cure. Cancer that strikes fear in the hearts of most grownups just upon its utterance.   That cancer.  She is kicking it’s butt.    She is waging war on “Stupid tumor.” She reminds Stupid tumor daily that she hates him.  She takes her meds even when she doesn’t want to and reminds  Stupid Tumor he is staying in pathology.  She tells Stupid Tumor he has no friends. And she asks me regularly if I also hate Stupid Tumor. (I do).  She looked at me the other day and said “Mommy my tumor’s still that word that you won’t let me say.”  (She called him F’ing Tumor one time. When I told her she couldn’t use that word (after I got over my shock that she has HEARD that word) she put her hands on her hips and asked “Why not? It is a F’ing Tumor.) I had to agree but still said she couldn’t say that word.)  She has a personal vendetta against Stupid Tumor.  It’s her or him and she’s decided she’s winning.  I think bikes or not, she is the strongest kid I know.  She asked me at the clinic last week if I thought A & C were strong too. I told her any kid that kicks cancer’s butt is strong.  These kids are little warriors and don’t even know it.

I take a deep breath.  She’s in bed and the hearing aids are sitting in their “jewelry box” on her night stand. Her pump is running her TPN, her feedbag is running her formula feeds, and she is curled up next to me in her bed. I kiss her fuzzy head. I miss that bald head. Time marches on.  Life will go on.  One day her room will be “normal” & won’t have all these supplies, and I won’t need to bring out a new garbage bag each night full of medical trash just from trying to get her ready for bed.  Like all “normal” kids she will start school, have homework, go to sleepovers, and hopefully, have a prom date. Life will be “normal.” Our days will be “normal.”  And bedtime routines will be “normal.”  

But Em….

she will not ….

she will still be… special.

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.

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.