Wow, um, when did that happen?

This was your life.

A week later to the hour, this is your life.

Um yeah, how did that happen?  My son was 19 months old, he was grumpy, losing some weight, but otherwise asymptomatic.  We had no idea his kidney had ruptured and been destroyed and the tumor in his belly was threatening his life, he just carried on, adapted to the pain.

For many, it's hard to believe, but I treasure that second picture.  I don't see the tubes, the medical horror.  I see hope.  He lived through the surgery.  He got a much needed red blood cell transfusion.  He had an epidural, and for the first time in months, he was pain free.  He was able to breath regularly again as his diaphragm had room to move.  You may not be there yet, you may still be in shock, images like this may make you want to look away or be horrified I took it. 

You didn't sign up for this, you didn't want to join the club, but chemosabe, you're in it. So get your steel toed boots on, because well if you don't find an occasion where you want to kick something then at least you'll look like a force to be contended with, because you are now a Cancer Mom. Every club should have a handbook, here's my version of the first chapter, you can find Christy and Gina's below. I am Melissa, you will know me by the length of my posts, sorry it's how I roll.

So you just got diagnosed this is what you need to start equipping yourself with or grappling with, or both:

You cannot stand around wishing your life was normal again. Because guess what sister, it isn’t, and unlike Disneyland, no Make-a-Wish is going to come along and make that happen. You never have to like this, but you absolutely must accept that this is your life now, this is where your path has taken you. Yup, you can make the best of it, yup you can handle it your way, but by golly you are a pediatric cancer mom now. You don’t have to wear it on a lapel pin, but it is there, it will always be there. It doesn’t have to ruin your life, but sitting around wishing to go back? That my friend will. The moms in trouble, they are the ones can't get passed that initial shock and just keep repeating, “I don’t know how this happened? I just want to go back and be normal again!”

We aren’t your neighbor, we are cancer moms. We aren’t going to hold your hand and say “I know sweetie, I wish that, too.” Wishing ain’t going to fix this, so put on some boots and get to kicking, this is your life, nobody is going to come live it for you, so get to living.  Don't sabotage yourself by thinking other Cancer moms are somehow different than you, like we got the secret book and have an advantage.  We all were you once, freshly diagnosed.  We learned along the way, we did it, and so will you.  As an awesome Cancer Mom once shared with me: You don't know how tough you are until you don't have a choice.

Yup. This sucks. And you don’t always have to give yourself a peptalk. Sometimes you are allowed to marinate in the suckitude. Pick a really good song where you can just feel all sad and have a pity party whenever you need it. Rinse, Wash, hit repeat. No, I am serious. I took/take pity party showers all the time. Crank it to hot, blare your pity party song and just stay there, cry if need be. Better yet, if you are inpatient, the hallway bathrooms with showers, at least at my hospital, they are the ONLY doors with locks. That’s right baby, you can lock the door! So when the volunteer comes by and says, “Is there anything I can do?” Why yes, yes there is. Even if your kid cries, guess what, you won’t hear it in the shower. Get on down the hall, take the worlds longest hottest shower, because guess what? It ain’t your water bill! And as Gina said, doctors respond better if you don’t stink and look like you have been trapped in a room for days.  They speak to you differently when you have made the effort to shower. They think, huh, she showered, she must have a brain cell or two in there, I will speak with her as one who is older than a kindergartner.

“Can I get you anything?” Why, yes. Yes, you can. Come on, there is always something you could use, no? Well then this is a wonderful opportunity to let your brain have some exercise. Be creative, nurses appreciate originality. So respond, have fun: “Red pudding with purple tapioca please?” Nurse: “Really?” You: “Oh fine then, how about a margarita?” This is how you make friends. Yup, your medical staff is your new circle of friends, play nice, it will soooooooooo be worth it when you really do need their help.  Like getting somebody to order up that CT just because you've got a bad feeling.

Make your kid say please and thank you, for everything. If your kid isn't talking yet, do it for them. Nurses and PCAs really respect and appreciate that, like a heap. They have a pretty thankless job, where you know, they torture and poison kids for a living. A little gratitude really makes a huge difference. I don’t care how miserable Josh was, he was saying thank you for that popsicle. He also learned to spontaneously say thank you for re-accessing his port, or changing his saline bag, or for the band-aid at the end of being accessed. Nurses really eat this up, and it shows respect. Your kid can yell, can scream, can fight, and kick, but make them say sorry and please and thank you. “You don’t have to like it but you WILL be polite to Nurse Marisol” was like a mantra. Josh had a small football in his abdomen, he had lost a fifth of his body weight and was in a lot of pain, but he still said thank you to the ultrasound tech, and he was only 19 months old. She had been kind and patient, she deserved it. Being very sick doesn't give you a free pass to be a brat.

Always read their name badge, make eye contact, personalize it, “Thank you, Marisol, you were so kind and patient with him and I appreciate it today.” People respond in such a different way when you use their name, even the transport people, or the people that clean the unit or the clinic. One of our favorites was the housekeeping lady, and trust me you want to be friends with the lady responsible for making the puke smell go away. They don't have to come stat, especially to grumpy mom's room.

Guess what? You get to learn a new language for free! Yes you will learn medical jargon for beginners, medical jargon 101, and 201! Yes this too comes free with your recent cancer diagnosis. You too will soon be able to incorporate words like deaccess, ANC, hem-onc, neutropenic, and other delightful terms into random conversation. Advanced courses to learn VRE and photopenic are available but not recommended. Do remember, learning a new language takes time and is intimidateing, so please inform your medical staff to slow down or repeat until you get the hang of it, they won't think you are stupid.

Find something at that hospital that is a guarantee to make your day better. Points if you can access it 24 hrs a day. Mine was cafeteria cake, with buttercream frosting and shaved coconut. It wasn't available all 24 hrs, but it was always there. My indulgence. Something I could do for myself. Something that was my little way of saying, “let them eat cake.” I would buy several and put them in the patient refrigerator (if I got discharged with spares still there, I went and delivered cake to other rooms. . .it is fun). If you are fully outpatient. Then the vending machine or a special piece of art, the giant puffer fish in the aquarium, something that you can find every time, and remind yourself of consistency with self-care, that you can get through. And if it is really crappy, walk away from your kid, leave them with medical staff and find your happy place and that thing/way to remind yourself to go there.  Your sanity, it is really really important now.

Duplicate. Yup buy extra deodorant and a toothbrush, put any medications and Tylenol and all that in their too. But also duplicate toys/distractions. We had/have bags that are “clinic toys” and “hospital toys.” I keep the former in my car and the other was somewhere I could get it easily if I thought we might be inpatient or if I needed someone to get it for me ( I am lucky enough to live 28 minutes from our Children's Hospital). For my son it was special cars and trains he ONLY got to play with in those places. Yup, we just got admitted, but SCORE I get to play with my Lightning McQueen racing ramp! When we were inpatient every 3rd week I just left my bag 2/3 packed. I came home and repacked it a day later with fresh clothes and just left it there. Have special pillow cases (Conkerr Cancer http://www.conkerrcancer.org/ ) and things that are just for going to the hospital or clinic or lab, your child, no matter what age will appreciate the personalization. For older kids I've seen mascots, a figurine that goes everywhere and gets it's picture taken with every trip. Make the bed up with pillows and stuffies from home, bring their bed blanket or get a duplicate for the hospital. Do not be afraid to MOVE IN. It is your room. Do take care hanging things on the wall, each unit has different rules.

A netbook can be a beautiful thing. Nick jr and PBSkids can save your life.

Always pack dvds. Find out which ones auto-replay. If your child has a tough time with late night vitals, consider letting it run all night. Yup, all night. That way when they come in to do vitals they can see by the light of the tv and don’t turn on the overhead. If they rouse your kid the child can just look up and see the care bears are still there, oh who cares I’m going back to sleep. It helps it really does. And no, it does not mean you will have to do it at home.

Give yourself permission to be weirdly inconsistent. No, I am not going to put chocolate and whip cream on his strawberries to help him gain weight. Yes, he can totally have a poptart and sunchips for breakfast. Your journey, your rules. You're a card carrying Cancer Mom, be corrupted by the power and wield it as you may. Your other kids will manage that they don’t get to, or maybe somedays they will, because some days, well who cares? Ice cream for everyone!

Give yourself permission to not be super mom. Yup, your kid has cancer, and the kitchen floor is sticky. He/She will not contract ebola from that juice spill. The flower beds will grow weeds. You are sustaining the life of a life-threateningly ill child, you rock. Hey, I said listen to me. You rock. Even if you are habitually 15 minutes late to every appt, you still rock, making it seem like the receptionists have a betting pool on your arrival time makes it exciting. Cut yourself some slack. You are in survival mode, do what needs to get done, the rest will, well. It will get taken care of or it won’t . Take what life has to offer, if someone cancels, don’t sweat it. Free time for you! And you know what, if shutting yourself in your house and being a hermit is what works for you, then fine, if people/friends don’t understand then so be it. I personally was a huge fan of the home bubble, and so was the boy, we just stayed there away from the germs.

Accept now, that some people will fail you. All those well meaning people who say “if there is anything you need,” they don’t all mean it. It’s a filler phrase, something you say because you don’t know what else to say. Accept that when you call them at 9:20 am or pm because you are out of milk and your kid’s ANC is too low and you cannot go yourself. That well, you’ll get a lot of no's sometimes. It doesn’t make them bad people, it just makes them human, and despite their attempts at empathy, they really don’t know how much that damn gallon of milk means to you today. When you get to someone who says yes, add their number to your speed dial. Say thank you. Snap a cell phone pic of your kid hugging the milk jug (yeah, my kid loves his milk, a lot, this has happened) and send it. Your gratitude helps ensure they’ll help again.

Always buy extra and in advance. If it is August, and someone gives you some free time, go ahead and buy halloween costumes or xmas presents. You have no idea what random admission could total throw a wrench in your plans later. Take advantage of any opportunity to possibly make your life easier later. Online shopping rules. . . if only they delivered milk.

Never turn down a friendly visitor in the hospital. Even if it is bad time. Your kid has cancer, people don’t expect a smiley bald kid commercial all the time, and if they do, well then, a good dose of reality is a good thing.

Get a camera. Take pictures, lots of them. Figure out how to turn off the flash, and hold still. I know you are thinking, you don’t want to remember this. But hopefully you’ll never do this again, so they are no do-overs, take the picture. You can't stop documenting life just because it isn't picture perfect. You don't know what your future holds, nothing is a guarantee. You have no idea if where you are now is a peak or a valley in your journey to come, take the picture. When you don’t have anybody to talk to, the camera can be there for you, sharing the experience with you, giving you a way to show it others. Camera phones can be an added plus, especially while in the ER for 6 hours at 1-7 am.

Start a caring bridge or blogger blog, NOW. Find a public computer to do it, and do it NOW. I cannot emphasize this enough. You do not want to have to be in charge of emailing and calling everybody, EVERY TIME. You can’t. It’s just too much. Start the site now. That way you only have to do the effort once and it gets to everyone. You don’t have to use pictures or use personal details, you can password protect it, just do it. It will be your friend.

Realize no Cancer Mom had it all figured out from day 1. You have to navigate your own path, your way, that works for you and your family. Give yourself the space to adapt and learn. Stop thinking you are lacking in something, we all have our own strengths

Breathe.

Hug your family.

Buy the push-pop or the light up piece of junk, little smiles just became a more precious commodity.