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Category Archives: Catastrophic Events.

Parenting FAIL Friday: Too many cooks in the kitchen.

I love to cook. Usually. It gets old with minions whining about the little green things (herbs) or how the pasta tastes funny (because it isn’t elbow macaroni), but I generally like cooking. I love being adventurous. And not to brag or anything, but I’ve gotten pretty good over the years. This year’s culinary adventure was into the world of Asian food, and I’m now obsessed with Thai coconut curry.

That is irrelevant to this post, I just super love curry. Anyway. Yesterday was like New England summer (read: 50 degrees) so the girls felt that riding bikes in sun dresses and flip-flops was appropriate. Though I made them wear actual clothes, I DID wholeheartedly shoo them out the door. This left me with a rare window to prepare dinner without chaos. No one shoving me into the hot stove because it’s their turn to stir. No one sliding their finger  under my chef’s knife to steal a piece of pepper. Because that’s happened. Just uninterrupted cooking. Glorious.

The whole house was clean, and I REALLY didn’t want to make a mess, so the Nerd offered to help me in the kitchen because he loves me. This could be fun, I thought.

Side note: The night before, Make-A-Wish volunteers delivered our wish package, along with pizza for dinner. You’ll see why that’s important in a bit.

We started prepping the ingredients. I asked him to chop the garlic. I use LOTS of garlic. I pulled out other things, only to look over and see that he was individually peeling each clove – with his fingers. I do the smack down – literally. I smack the garlic with the flat side of my chef’s knife, and the peel virtually falls off. It’s fast. I need everything to be fast at dinner time. But he didn’t want to try that technique, so I let it go and let him peel.

Next was the onion. I showed him how to dice an onion while I prepped a pot of water on the other burner for the pasta. He did pretty well, for a first timer. Thinking he had the onions under control, I turned on the oven to pre-heat and got out the rest of the ingredients from the fridge. A few minutes later, I realize he hasn’t stirred the onions. I give them a toss just in time – caramelized, but not burned. Thank heaven. He’s now asking about slicing green onions. I give him instructions. Smush walks in and asks what’s burning.

Wait, what? Cue this scene:

Smush: Uh, what’s burning?

Nerd: Nothing.

Smush: Yes it is. I see smoke.

Me: Oh my gosh. There is smoke. Where is it coming from?

Nerd: What?

Me: The oven! The oven is on fire!

Nerd: But there’s nothing in there yet!

Me: I know! Oh God, wait. I left the pizza box in there. The pizza box is on fire! *rapidly turns off oven*

Nerd: Okay, I’m gonna open the door to let it cool off.

Me: NO!! You’ll feed it by giving the flames oxygen. It’s better to let the flames die out first, THEN open the door.

Nerd: Oh, right. Okay.

Me: *grabs fire extinguisher*

Nerd: What are you doing?

Me: Getting ready.

Nerd: Don’t use that. You won’t be able to use the oven if you spray that stuff in there.

Me: Okay, fine. But I’m ready. Just in case.

Nerd: *cracks oven door open when flames die out*

FUN FACT: The amount of smoke produced by a burning pizza box is UNREAL. Instantly the kitchen is full of smoke, and it is spreading through other rooms. The girls ran in to see the commotion.

Nerd and I: *coughing* Get out of the room! The fire is out but the smoke is dangerous! Get out of the room!

*Girls exit*

Nerd and I: *frantically opening every door and window we can find. Running around blindly because my eyes feel like someone poured acid on them and my lungs are crying.*

Nerd: I can’t see!

Me: Me either!

Nerd: Okay, I’m gonna grab the box and get it out of here. Clear a path.

Me: *moves things out of the way* Done!

Me: Thank God.

Both of us are still rubbing our eyes. I’m still coughing sporadically. We get outside to deeply inhale some fresh air. The house begins to clear up. Fans are on, windows are open, and most importantly, nothing is on fire.

Me: Where are the girls?

Nerd: Outside?

Me: They ran all the way to the church parking lot. *giggle*

In the beginning of the school year, Goo did a packet on fire safety. Part of that packet was making a fire escape plan and practicing with the family. Our plan was to meet in the church parking lot next door if, for some reason, we got separated. So at the sight of smoke, Goo made everybody run to the parking lot. At least we know she’s got a clear head in the face of emergency.

The house almost went up in flames. Again. But dinner wasn’t ruined. And I found out my kids actually remember the fire escape plan. So, umm, yay for being prepared?

You know, minus leaving the cardboard pizza box in the oven.

 

 

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: 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%.

Delayed onset crazy. Is that a thing?

In college I had the extreme pleasure of studying Psychopathology as part of my undergrad degree. Not sarcasm, that class was awesome and crazy. Heh. Get it? Crazy?

Anyway. Once you’ve read the DSM, you are practically an expert in diagnosing psychological disorders. (That was most definitely sarcasm. Please do not attempt to diagnose anyone. Including yourself.) After the first month I just knew my family was rampant with substance abuse disorders (that part is true), antisocial personality disorders (probably also true), and phobias (also true again. Maybe I’m actually awesome at this).

Finding myself knee-deep in crisis at the moment (the whole kid with cancer thing is a doozee), I am once again diagnosing all my issues. In the beginning I was all, “We got this. We’re kicking butt and taking names. Ain’t no thang.” Now I’m all, “I will never, ever, relax again.”

A couple of weeks ago Goo had some scans to check the progress of her treatment. There is good news and bad news. Thankfully, hers is all good. The tumor is down by 90%, and what’s left is not active. In other words, that sucka is almost gone, and what remains is basically dead tissue. Yay.

The bad news is that I’m fairly certain I’m certifiable. I made it through 4 months of treatment like a boss, and then out of nowhere, I go all PTSD on myself. When Goo was being taken in for a scan, we had to walk by a waiting room. A waiting room that looked exactly like the one I was sitting in when she was diagnosed. Immediately my eyes welled up with tears and my heart rate increased. I flashed back to the look on the surgeon’s face when – I knew. I knew it wasn’t going to be good. I knew it was going to be very, very bad.

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So. Post-traumatic stress. It’s a thing. And from what I’ve been reading (because I do that – I read science things), it’s a thing in lots and lots of parents with children who have cancer. Super.

Additionally, I tell people that her report is good, and they’re all super excited and like, “Woo hoo! You’ll be done!” And all I can think is, “Umm, nope. Not at all.” We have 24 weeks left before this part is even over. And after that? I may never, ever stop worrying. Every ear ache. Every eye twitch. Every bug bite. I will – if only for a second – panic and wonder if it’s back.

And then I realized – I have delayed-onset crazy. (I totally made that up, but I’m going to suggest it to the APA for review of the next DSM). It must be a thing. I can’t possibly be the only parent of a child with cancer to ever get a breather and then be like, “So, that sucked. And now I’m a little insane.” My hypothesis is that, in the beginning, you don’t have time to do anything but treat and drive and medicate and clean and maybe sleep sometimes. Then at some point, you remember you’re supposed to breathe on occasion, and when you do, you start to realize everything that’s happened. What it all means in terms of check-ups and scans and future concerns. And then you lose it. Just a little bit.

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Delayed-onset crazy does not affect everyone. The Nerd totally doesn’t get it at all. He doesn’t worry – about anything. Ever. In his mind, I give her shots and take her to the hospital, and then it’s all done. In my mind, I give her shots and take her to the hospital, and then I keep going to the hospital for follow-up appointments, and I spend every waking moment wondering if her face looks a little droopy, or if her hearing is a little off, or if that weird bump on her arm is actually just a mosquito bite.

This is where all my awesome readers chime in with things like, “You’re totally normal! You’re not alone! Anyone in your shoes would be like that!”

In the meantime, I’m going to grab my DSM and see what other breeds of crazy I might be. (Is caffeine-dependency a thing? Because I totally have that.)

Kicking butt and taking names.

Goo is my hero. Second chemo treatment today, and she’s already totally off pain meds. She’s eating, playing, coloring, fighting with her sisters, praying, and being silly. Best. Kid. Ever. She’s kicking butt.

I’m the one taking names. Literally. I almost got someone fired. I’ll leave you wondering on that one, because I will reveal the details in my upcoming post about what not to say to a cancer parent. Here’s to having my sense of humor back! And to wine. That helps.

Our new normal.

Goo is doing much better. She’s eating again (finally). After two weeks of minor surgeries and scan, after scan, after scan – we’re home. For now.

Every three weeks, we will be admitted to the hospital. In between then, we go weekly for chemotherapy. For six weeks, we go five days a week for radiation.

I’m an educated person. I consider myself to be of at least average intelligence. I have a pre-med background with a degree in Biology and minor in Chem. That being said, the barrage of information I now have to memorize and juggle is challenging at times, largely because I’m now terrified of letting anyone but the Nerd or I care for her. How I’m going to care for her, and continue being a good mom for Punkin and Smush, and a good wife to the Nerd, can seem a little taxing at times.

In the hospital, I kept thinking about how I would manage to sanitize the whole house when I got home. And figure out meals as we adjusted to our new normal. Chemo can affect taste, and given that Goo has never been the greatest eater, I had no idea where to even start.

As it turns out, I didn’t have to. Friends came over and sanitized our house floor to ceiling. The Nerd kept up with all the picking up, laundry, and regular chores. People started contributing to a schedule to bring us meals daily. We started receiving gas gift cards, groceries, and offers to help from more people than we can count.

And through it all, Goo is an inspiration. I have to give her a needle every night as part of her regimen, and even though she fights it, she hugs me after and tells me I’m still the best Mommy ever.

Kids are so much tougher than adults.