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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.

 

 

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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.

If you want to restore your faith in humanity, spend a week with me.

For those of you following this story, I apologize for keeping you in the dark. Apparently having a kid with cancer is time-consuming and exhausting. Who knew?

Goo is, as expected, kicking some serious – well, you know.

Radiation? Owned it. Finished 28 days of treatment with NO – that’s right, NO – side effects. No burns. No neuropathy in her extremities. No mouth sores. No esophagitis. No fatigue. Because frankly, cancer, you don’t stand a chance against my kid.

Chemotherapy is expected to be ongoing through November. We have an evaluation in six weeks. But she’s on a roll, defying the odds, shocking the doctors, and quite frankly, I wouldn’t be surprised if we got to finish early. I know that’s unheard of, but so it is having 5.5 weeks of intense radiation therapy with no side effects. Well, except the sweet tan she’s got going on.

I don’t write often because I don’t want to be a Debbie Downer (if you don’t get that reference, watch this). There are days when I’m kicking butt and taking names, and there are days when I cry in the shower because no one can see me. Or in the car because I’ve got a good hour to get tears out, and still have time for the red, puffy eye and nose thing to go away. It’s so unbecoming. Honestly, most people are aware of the heartache that having a child with a serious illness can cause. I didn’t want to write about that as much. I didn’t want to wallow there, to dwell on the overwhelming physical, emotional, mental, and spiritual fatigue. So there. Now I’ve said it happens, and we can move on to the good part.

Goo’s fight with cancer has shocked me in a very, very good way. The world is full of ugliness. Full of wars, threats, disease, incomprehensible greed, and suffering. It is easy to forget that it is also full of courage, hope, victory, inspiration, and love. If you hang out with a pediatric cancer patient for a while, you get to see that. And because you just can’t understand unless you really see, I’m breaking my own rule and sharing photos. This is my family. This is our team.

Exhibit one: Goo’s radiation oncology team. Heroes These ladies were there every single day, reassuring her, playing her favorite music, cracking jokes, and getting us through what is, in the beginning, a very scary ordeal. The fact that they get paid a fraction of what some tall guy with a ball gets paid is deplorable in my opinion, but that’s another post. These are my heroes. There is a lot more money in other fields, but they spend their days lifting patients, reassuring terrified families, and bringing a little bit of joy to a very dark road.

Exhibit two: This beautiful group of bald heads. Baldies Our church did a St. Balrick’s fundraiser in honor of Goo, and several other members who are battling cancer. We had about 30 heads get shaved, in addition to 8 ponytails donated to Locks of Love. And because the sight was so overwhelming (read: I cried my mascara off), I’m breaking my own rule and sharing pictures. Because you guys have got to see this. Donations are still being accepted, and all funds go to support pediatric cancer research – the scientists taking the cure rate of children’s cancer from 58% to 80% in just the past 35 years. If you’d like to donate, please go here.

Exhibit three: Sisterly love. Cancer impacts everyone in the family, and siblings are no exception. Punkin has always been an inspiration to me, but watching her fight alongside her sister has blessed me more than I could ever communicate. She has endless patience, even when mine has run out. She opens up her room to extra sister sleepovers, and spends her days off from school going to chemo with us because it gives Goo extra courage to have her big sister there. And then there was this: Love At our church’s St. Balrick’s event, we also had women donating their hair to Locks of Love. Punkin has had long hair for years, almost covering her back. She hesitated to even let me trim it, until Goo lost her hair. Almost immediately, she decided she would donate her hair to help other girls fighting the same fight. I want to be like her.

Exhibit four: I don’t have a picture for this one, but I’ve noticed something. When Goo lost her hair, I immediately went into Mama Bear mode. One horrific comment was made to her from an unknowing observer, and I prepared to obliterate anyone who used hurtful words with my baby. I braced myself for the strangers staring. And it happens all the time, just not in the way I expected. I expected to see looks of fear, curiosity, even disgust. What I have seen? Looks of compassion. Looks of hope. Kind nods from passersby that seem to say, “Good work, Mom. You’ve got this. She’s a fighter.” If you take the time to look, the world is full of truly wonderful people. We encountered a fellow cancer patient, a beautiful woman with three children of her own, who took one look at Goo and said to me, “She will be a strong woman, with a powerful story to tell.”

I couldn’t agree more.