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Scanxiety.

On the blog’s Facebook page, I put up a little blurb about our less-than-ideal scan appointment with Goo on Saturday. It was the nurse. She was kind. She was patient. Those are wonderful qualities in a nurse. You know what else is a wonderful quality? Not having to restick my baby over and over because you can’t tap a port that is sticking straight out of her bony body. Or getting an IV placement that doesn’t kink and cause constant pain. Those are SUPER qualities in a nurse. Ours didn’t have them. By the end of it, I was on the verge of making sure she didn’t have a job, either.

Side note: I did not actually try to get her fired. I mean, I did in my head, but that doesn’t count.

Goo has absolutely hated having her port accessed since day one. For non-cancer readers, a brief explanation: chemotherapy patients have surgery to place a small port in their chest. The port is accessed with a (rather large) needle and is used to deliver medication. Some nurses say it doesn’t hurt because it’s so close to the skin. The ones who said that never had a port. They never had cancer. I could punch you in the face and talk all day about how it doesn’t hurt. At least not me. It hurts Goo. And she hates it.

Our oncology nurses are fabulous. They are always one and done – one hit, and that port is accessed and the pain is over. It’s what they do all day, every day. Nurses in diagnostic radiology, or the ER, or other areas, aren’t as used to it. And that’s where we’ve had problems. I am a mama bear when it comes to my babies, especially the one who has suffered through more than any child should have to, in my opinion. She dreads scans because she has to have her port accessed for contrast dye during the MRI.

I dread them because it’s waiting. Waiting to see if it’s gone. Waiting to see if it’s back. Waiting and remembering, well, everything. A reader told me that her friends coined the term, “scanxiety.” It’s perfect. Scans are needles, hours of laying in a giant tube, and floods of memories of the past year.

My scanxiety was totally under control. It always is, because I cry in the shower when no one is looking. But when the nurse missed, and that giant needle had to come out, and go back in, Goo sobbed. She looked at me, tears streaming down her face, and said, “Mama, I hate this. I wish I never had a bump. I wish I never had it because it always makes me have to get needles. And it hurts.”

Everything in me wants to trade places. I would take a thousand needles to save her from one. I wanted to tell her that we didn’t have to do any more, that it’s all over.

But it’s not. So many people, when she finished treatment, shared how excited they were that we were done. And we are – with chemo and radiation. But “remission” is not “done.” It’s needles every month. It’s scans every 3 months. It’s making my sweet girl feel pain that I wish she never had to feel. It’s me checking her facial motion when her mouth makes a weird shape, because I worry that the paralysis is returning. Stupid cancer.

A couple of people have told me that worrying about the scans, or the way her face is moving, or that headache she had two weeks ago, is living in fear. Those people can shut it. I caught her cancer the first time because I was “afraid” when her “ear infection” didn’t get better. I rushed her to the ER when her face stopped moving because I was “afraid” that something was very wrong. Oh, that’s because it WAS very wrong.

Scans, worry, being on top of every change in health – that’s not living in fear. That is the reality of being a cancer parent. That is how we found it the first time – it’s how we do our absolute best to keep it from coming back.

Anyway. We got her on the table for the MRI, and her arm hurt. We had given up on the port and done a traditional IV, and it was painful. She cried, she told me she was scared, and that it hurt. I held her. I fought back my own tears, and told her it would be over soon. Everything will be done and we’ll go home and snuggle. Also, there would be ice cream. I was able to calm her down. We set her up with super cool goggles that let her watch a movie during her scans. And then I spent the next 90 minutes of her MRI trying to hide my face and hold back the tears. I’m due for a good cry anyway. During treatment, every 2-3 weeks I’d have a total tear fest in the van on the way to the hospital while Goo slept in the back seat and nobody else was around. Now I go 3 months without needing a tear fest.

I’m basically the poster child for emotional stability. I blame scanxiety.

 

 

A year ago today: What cancer did not do.

One year ago today, my husband and I sat in a waiting room while a surgeon sliced into the right side of Goo’s head and scraped out a small piece of tissue. He removed some from her auditory canal. He made a frozen slide. He stitched her back up. And then he approached us.

I knew. I knew the minute I saw his face that it wasn’t good. I remember his voice as he said, “It looks like something called, ‘rhabdomyosarcoma.'” I remember my heart pounding, my husband and I searching each other’s eyes. I remember thinking, “You need to hear what he has to say. This is important, and you’re the one who understands the science jargon. Listen now. Cry later.”

And I did. I heard it all. I did not cry until he left the room. And then I collapsed into my husband’s arms as we wept uncontrollably. I shook all over. I put my head between my knees when the room started spinning.

And then I went to work. I made phone calls. I got angry. I lost 6 lbs in 5 days because there isn’t much time to eat when you’re fighting for your child’s life. I heard every single word the doctors said, and I can still recall much of it, verbatim. I fought through anger and doubt that nearly destroyed me.

Cancer, you sneaky, vile thing. You came like a thief in the night. You sought to devour.

But one year later, let me be clear: YOU LOST.

You did not destroy a life. Actually, you gave me an appreciation for all that I have in a way that wasn’t possible before this.

You did not shatter hopes and dreams. You fueled a dormant passion. You rekindled fire that had begun to fizzle. You reminded me that this isn’t the end – it’s only the beginning.

You did not tear a family apart. In fact, you expanded it. You brought people into our lives that we now stand beside as we continue the fight to defeat you.

You did not steal my baby’s childhood. You see, she doesn’t really remember you. She doesn’t remember your pain. She doesn’t remember the way you tore at her cranial nerve, leaving her face paralyzed on the right side. It’s hard to remember when that paralysis isn’t there any more. She doesn’t remember the spinal tap, the bone marrow biopsies, or the way you threatened to destroy her hearing. Which, by the way, you did not do. Let that be a reminder: You were beaten by a 5-year-old.

You did not leave us paralyzed by fear. I had a very small, very feisty warrior reminding me that fear is a choice, and it’s a choice she never made. So we do not fear you. We will not wait helplessly for you to return. We will press on, and we will continue to fight for those you are still seeking to devour. But we will not live in fear.

You did do a lot, though, in a year’s time. You taught me to love more deeply than I ever thought possible. You used a child to teach me what it means to fight. You created a love between 3 sisters that can never be broken. You took a rock solid marriage and made it even better, because there is a tremendous bond formed in the thick of battle. You taught people how to give, and how to do so selflessly. You forged friendships that will never be broken. You taught me to believe in a God that is greater than I could ever hope to understand, and certainly bigger than you. You taught me that in a matter of moments, there are people worldwide who lift us up in prayer, and believe me, I will never forget that. You taught me to hope, and that is something I had forgotten how to do.

Cancer. You did so much. But remember one very real thing you did not do:

You did not win.

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Childhood Cancer Awareness Month: ACCO, and behind the scenes of childhood cancer.

It’s still childhood cancer awareness month. We’re still fighting cancer. If you don’t follow me on Facebook, you may have missed that my last organization to highlight this month was St. Baldrick’s. They contacted me and asked me to do a piece for their blog for childhood cancer awareness month, and I happily obliged. You can read it, and learn more about this amazing organization, here.

Today I’m highlighting another of my favorites, the American Childhood Cancer Organization. By now, you’re probably aware that the federal government gives a whopping 1% of the cancer research funding to children. I still can’t wrap my head around that one.

Love

Still my favorite picture. We’re fighting to change the face of childhood cancer.

That’s why it takes families like ours, and groups like the ones I’ve been talking about, to really impact childhood cancer. The ACCO has one mission: to change the face of childhood cancer treatment. To refuse to say, “80% is good enough.” When 1 out of every 5 children dies, that is most certainly not good enough.

They’re coming at this silent monster from every side: raising awareness, raising funds for research, and advocating for legislation that won’t leave our children on the back burner.

One of their big fundraisers – which we are hoping to do in Punkin and Goo’s school this year – is PJammin, a pajama day where kids and grown ups pay $1 (or more if they wish), to wear pajamas to school. You can do this fundraiser anywhere – businesses, churches, schools, etc. It’s fun, easy, and not only raises money for pediatric cancer research, but helps give us an opportunity to share about pediatric cancer.

There is so much more to it than many people – previously, myself included – realize.

This week we had to stay at the hospital longer than expected. Why? Because Goo had a cold. When you hear “cancer,” most people know about chemo and radiation. They don’t know that every time your child’s temperature hits 100.3*F, you have to go to the emergency room, where needles will be inserted into the port in your child’s chest, blood samples (and nasal swabs, and urine samples) taken, and mass amounts of antibiotic will course through their veins. If their blood counts are okay, you may be allowed to go home, and come back the next day for more mega-antibiotic. If they’re low, you’re not going anywhere. This happens every. single. time. they get a fever. It’s scary, and traumatizing, and unbelievably exhausting. (Because we all know that the only time a child can possibly spike a fever is in the middle of the night). It wreaks havoc on the other kids left at home, and your little hero. Cancer is a big fat jerk.

Organizations like ACCO need to work because while treatment is getting better, no new drugs have emerged in 20 years. Twenty years of struggling with “cures” that can lead to lifelong infertility, brain damage, and secondary cancers. Call me crazy, but if your cancer treatment causes cancer, 1% isn’t cutting it. .

So click over to ACCO. Have a pajama day. And raise some awareness – and research funds – for childhood cancer.

We need it.

The universe is against me. Also, I’m crazy.

I quit.

I texted that to my husband this morning. “I quit.”

There are so many reasons for this. My kid has cancer. There are other health issues in the family that we’re dealing with. Financially, well, let’s not talk about that. It will literally take me 65 years to pay off my student loans from the degree that has done me virtually no good. I love knowing scientific names for the muscles. Was it worth a $120,000 education? Debatable. It’s also super helpful that the Nerd still hasn’t gotten the raise he was promised from LAST year. I stress about leaving an inheritance for my children, even though I’m 30, because my mom died when I was 10 and right now they’d inherit a nice blender and not much else. My mother-in-law – who was a seriously kick butt lady – passed away a few weeks ago. In 30 years, that’s the second time I’ve had to say goodbye to an incredible woman I loved and knew as, “Mom.”

But here’s the real kicker. My stress level reached a point where I wasn’t sleeping. I often found myself feeling my heart racing as I worried about chemo/weight loss/vomiting/paying the registration on the cars/money drama/failing at life in general.

And then, the fruit flies came.

Male (left) and female D. melanogaster

What most people see.

Yes, you read that correctly.

Over the summer, we got fruit flies. This may or may not be directly related to the fact that my children “throw away” their food in places like under the sofa, between the cushions, and behind their dresser.

I still haven’t gotten rid of them. There is no food out. We made a little vinegar trap I found on Pinterest. I cleaned everything – EVERYTHING. You guys, I pulled out the refrigerator and stove and mopped the floor underneath. That makes 3 times this year that I’ve done that. Do I get a prize? I feel like I should get a prize.

Anyway. I CAN. NOT. get rid of them. No matter what I do, they come back. And then I stand in the kitchen trying to make chicken enchiladas with mango salsa while pausing every two seconds to kill a flying thing and I stop and think that this is why people start to hear voices.

If a study was done on the history of individuals who have had nervous breakdowns, I’m pretty sure they all battled fruit flies.

I’ve worked hard at not being a loser at life. I never smoked. I never drank until I had kids. I obey the law. I was always an honor student. I have a Bachelor’s degree in Biology. And yet, no matter how hard I try, I can’t get anywhere. All of this is clearly confirmed by my absolute need for a clean house that is pest free, and my complete and utter inability to do that. THAT’S ALL I WANT. I’m not asking for a 6-figure income. I’m not asking for a McMansion with a manicured lawn. I’m not even asking for a minivan that doesn’t smell strangely of rotten milk and goldfish. I just want a clean house, and the permanent extinction of Drosophila melanogaster.

What is *actually* invading the house.

I’m not losing sleep because my baby has cancer. She’s kicking its butt and we have less than 3 months left of treatment. I’m not losing sleep because of money. We’ve never been homeless, and we always figure out a way to get by.

But the fruit flies?

They’ve done me in. They’re the proverbial straw that broke the camel’s back.

Remember when I talked about delayed-onset crazy? I think this is related to that.

You’ll see that on my tomb stone: She fought long and hard, until the fruit flies came.

I’m officially certifiable.

Childhood Cancer Awareness Month: Colin’s Crew.

My last post highlighted The Tommy Fund, an organization whose mission is to help ease the financial burden a pediatric cancer diagnosis brings with it.

I told you that they helped us. I told you that Goo will be running to help raise money, and pay it forward for other families who will find themselves fighting this same battle.

And you guys, you kind of rock. We’re more than halfway to her goal. We’re getting donations from Kentucky, California, even Canada. I was texting the Nerd all day about how much you guys amaze me. Because some of you haven’t even met us, but that doesn’t matter. You see a need, and you work to meet it. And that makes you totally awesome.

Today I want to  highlight another organization that is near and dear to us, Colin’s Crew.

Colin’s Crew is a CT-based organization who provides snack bags for patients at the Smilow Cancer Hospital and Connecticut Children’s Medical Center. They raise funds through grassroots efforts to support cancer families. They assemble hand-made valentines for in-patient oncology kids. Just 7 days after her diagnosis, Goo received one of their bags. And during a week haunted by pain, fear, uncertainty, and heartache, those lacy red hearts brought a smile to her face and a chance to forget everything, if only for a moment.

In addition, Colin’s Crew organizes events for cancer families, particularly ones that most patients could not participate in due to treatment requirements. A child receiving chemotherapy will often suffer from neutropenia – a low white blood cell count that leaves them very susceptible to, and unable to fight, infection. For this reason, we can’t go to places like baseball stadiums and movie theaters.

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That is, until Colin’s Crew stepped in. They arranged a cancer family day at a baseball stadium, in a private area away from crowds (and germs). An area that just happened to be right where the team was warming up. Where a player walked right over to Goo and handed her a game day ball, which we used to get the player’s signatures after. It gave our family a day out, to enjoy the summer in a way we sometimes forget when we’re busy juggling meds, giving needles, and praying that this time the fever will break on its own. It gave us a chance to watch our little hero run around and play with Colin (the brave little boy who inspired this organization), and to just be a kid, not a kid with cancer.

Later this year, Colin’s Crew organized a movie premier – a special reserved showing of Monsters U – just for pediatric cancer families. They sanitized the theater so germ exposure wouldn’t be an issue. The provided popcorn and soda. They even gave Goo an award for being best dressed.

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Can you blame them? She’s fabulous.

Check them out. Follow them on Facebook. Send a donation, pack a snack bag, make a valentine, get involved. They’re worth it.

It’s National Childhood Cancer Awareness Month. My warrior is running to support cancer research. You can help.

Brace yourselves. I will be bombarding you with information, helpful tips, awesome charities, ways to fund research, and how to not be stupid around cancer families.

September is National Childhood Cancer Awareness Month. Like, for real. The President declared it. It’s not like the 4,682 other “national fill-in-the-blank” months. National Little Dog Lovers month. National Foot Fungus Awareness Day. National Heartworm Medication Week. This one is legit.

The Nerd and I spontaneously decided to head to DC for CureFest, a small festival of sorts centered around raising money and funding for pediatric cancer research.

Why do we need this? This is why:

The federal government allots $5 billion a year to cancer research.

FOUR PERCENT of that is for children.

FOUR. PERCENT.

I’ll let you pick your jaw up off the floor. And maybe wipe your face if you vomited in your mouth like I did when I heard that. 

Their reasoning? Childhood is basically the same thing as adult cancer, so the research will help eventually.

Oh, okay then. So, Mr. and Mrs. Politician, if your little girl is diagnosed with asthma, I’ll just give you some chest cold medicine. I mean, they both cause issues in the chest. Those can both make it a bit harder to breathe. Sure, lots of kids would die, but it’s basically the same thing, right? 

It’s not okay.

And even in the midst of treatment, we’re doing something about it.

This month, I will be focusing on some fantastic organizations donating to cutting edge research – research that could lead to using a child’s own blood cell’s to fight cancer. No nausea. No vomiting. No hair loss. No anemia. Just some serious cancer a$$ kicking.

I will be asking you to donate. I know, people hate that.

Because you’d rather buy a new fall scarf. And you really want another Starbucks this afternoon. And you really wanted those cute shoes. And you really want another date night. And you really want to finish decorating the living room.

You know what I really want?

I really want my baby to live. I really want that sweet little boy we see in clinic every week to be able to eat again. I really want that mom rocking her 8 month old while poison is pumped through her veins to be more concerned about crawling than she is about her baby seeing her first birthday.

So I humbly submit that if you can afford a $4 latte, you can afford to donate $4 to my first pediatric cancer organization highlight:

The Tommy Fund.

They are based in Connecticut, and are an outstanding organization whose purpose is to help alleviate some of the burden a cancer diagnosis carries with it. They pay bills for cancer families in the early stages to help minimize the financial storm that surrounds cancer treatment. They visit the hospital, provide snacks and toys, and reach out to parents in what is probably the most terrifying moments of their lives.

This year, we have the honor of participating in the Tommy Fund Family Day, a celebration for families of children with cancer, and a day to raise money for this wonderful foundation.

Goo will be running in a kids’ fun run, and she needs help. She needs people to sponsor her and her big sister in this run, so the Tommy Fund can keep doing it what it does best – helping families like ours.

This is her donation page.

It has her real name. It has her beautiful face. It has an opportunity for you to help families fight back against a silent killer.

No donation is too small. Her goal is $500. We have raised $90 so far. The Nerd and I, though knee-deep in cancer treatment, are already thinking of ways we will help when we’re done. We may start our own foundation. We may join a local organization and support them.

One thing is for sure: We won’t give up. We won’t forget how other warrior families have impacted our family.

We won’t stop at 4%.

I actually know what I’m talking about. At least this one time.

We just finished week 22 of chemotherapy. It was not a fun one. The specific type of drug Goo gets requires tons of IV fluids, which makes her pee all. night. long. so we’re always super tired in the hospital the next day. And now, in addition to hair loss and occasional tummy trouble, it’s doing this weird thing to her sense of smell. She hates the smell of – well, everything. She hates the smell of the entire hospital. We were there for 2 days, and I’m not kidding when I say she held her nose the entire time. She hates the smell of alcohol wipes – super convenient when you’re getting IV pushes of something or other every 2 hours. She hates the smell of chocolate, and tomato soup, and hand sanitizer, and blankets.

Actinomycin

What doctors think chemotherapy looks like. (Photo credit: Wikipedia)

Chemotherapy is so much fun.

 

She also gets another drug that is particularly brutal on the stomach. She never had issues until this one was added into her regimen. It’s called Actinomycin, and it would make a wonderful torture device. Goo gets anti-nausea meds around the clock when she gets it, but this time even that didn’t cut it and she vomited the next morning. We added in a second anti-nausea med, and she was better. Except that we had different doctors on the floor this time, and a new nurse, none of whom were familiar with her or the fact that she never eats for 24-48 hours after chemo. She always makes up for it once the poison starts letting up on her tiny tummy, but she has two days where she pretty much hates food. Understandable. Except the new staff members decided to tell us we couldn’t leave unless she ate. And I kind of hate being there, so I begged and pleaded and prayed and got her to eat a double popsicle.

Gremlins

What chemotherapy actually looks like. (Photo credit: Bob Bekian)

To which the doctors replied, “She needs to eat more.” Sigh. Really? Let’s make a deal. I’ll give you cancer, and horrific medication, and then see if you feel like downing some pizza and nachos while the medication rips away at the lining of your stomach. MMkay?

 

I really love our hospital. Like really, really love it. Everyone is fantastic. But if you expect chemo kids to eat immediately after treatment, you’re maybe forgetting the number one side effect of chemotherapy. Or maybe you don’t know what uncontrolled nausea feels like. Hint: it feels like awfulness. Because that’s a thing. I told them that this is her norm: she’s getting a drug that almost always leads to the need of a feeding tube, and she has a day or two where her appetite is off. That she has been really great about eating at home. That they need to back the heck off because this is my baby who is suffering through her treatment and I may call on my inner Jackie Chan in a minute.

 

Well, maybe I didn’t actually say that last part. But I thought it.

 

Anyway. I got her to eat some apple. Like 1/3 of it. Then I was naughty – I threw it away and told them she ate most of it. And we went home. And the next morning she woke up and ate a whole peach and a cup of yogurt with nuts and granola.

 

Told ya so.