Pack Your Bags

It's back to school and while so ,many moms are worrying what to pack for that first day of school, we know there are plenty of you out there worrying what to pack to head to your child's hospital.  We thought we'd share our must-have packing lists.

When my kid was on treatment, these were the things I brought to the clinic/hospital:

Coloring books that she never colored in, but just HAD to have.

Markers that work much better at coloring the exam table than crayons.

Portable DVD player because there's only so many ways to keep a kid occupied in an 8x8 room.

Assorted chargers for electronics because you never know how long you're going to be there.

DVDs since it was a fact we could watch Snow White twice over by the time Eve got accessed until the time her chemo was ready.

Books of the cardboard variety, for when she was waiting for Snow White to start back up again.

Stickers for Eve to put all over me.

LMX, in case we needed to get numb with a quickness.

Emla because I felt better always having lots of numbing cream on hand.

Bandaids because Eve liked these better than stickers.

Press 'N Seal to put over the Emla, which was much better on her skin than Tegaderms.

Blanket, for those times she was exhausted or just plain sedated.

Stuffed animal so she would have something to throw over the balcony at clinic.

Change of clothes because the first day you forget these, you will get puked on.

An industrial-sized bag of Dum Dums for both first and last resorts.

An appointment book to fill with scan and treatment reminders.

Months worth of blood count reports to turn into paper airplanes.

Snacks, because you're gonna be there a while.

Drinks, because those snacks will make you thirsty.

Post-it notes with questions for the doctors since I am in the 'Memento' stage of life where I have to write down any loose thoughts.

Hand sanitizer for what Eve just touched.

Sanitizing wipes for what Eve is thinking about touching.

Masks for when Eve was neutropenic and we wanted to make sure she REALLY looked like a cancer kid.

Those were just the essentials.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>


Sanitizer we are germ haters, what can I say.
"Bear" because Bear soothed the beast.
Bottles, diapers & wipes because what goes in, must come out.
Change of clothes again, what goes in must come out. The adults had a change of clothes as well.
Stroller but only in the beginning because it was easier to handle the child and transfusion pole while walking became a milestone.
Confections because baking kept me sane and sugar kept the staff taking care of my kid happy.

We were fortunate to have moved into a newly built Cancer Center half way though Gwyn's treatment. The old building was built in 1950, so you can imagine the width of the halls, ceiling height and what lied beneath the insane umpteen layers of paint. The new building had everything from an interactive play mat in the waiting room, a computer room across the play room and both rooms had floor to ceiling glass walls, a bench with cubbies underneath filled with tiny little "poke prizes" of which I loved to see the handmade ones, and my favorite..a soda found in the kitchen complete with Coke and a pellet ice machine. Our needs were simple in the beginning because we were dealing with a 12 month old and the new building had everything needed to keep this kid occupied for the treatment days.


>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

I lived a life of duplicates.  Because it made my life easier.  Because I loathe to pack the same things over and over.  Because if he only saw it once a week it was still new and exciting the next week.

Josh was 1.5-2.5 yrs old his first go at cancer.  These items never got unpacked, they stayed in the car:
Stroller because in there I can make him go where I want and he can zone out when he is over the associating with humanity. I kept a blanket in the bottom of it so I could throw it over the whole front of the stroller if he was trying to sleep.  He is a finger sucker and as he was trying to conk out was the only time he would fight the mask.  I'd use the blanket till he was out if we needed to go to a different wing of the hospital, then slide the mask on after he was asleep.  Paper mask, thick blanket, not totally the same thing, but it did prevent people walking out of the ER from sneezing on him.  
"Hospital" Diaper Bag (i wasn't kidding I duplicated everything possible) complete with an array of sanitizers, masks, emla cream, tegaderms, spare medical supplies (a roll of cloth medical tape can be 20 minutes of entertainment, and saline flushes are parties just waiting to be opened), extra clothes x2, diapers and normal kid things.  
Change for the snack machine, must have chewy sweetarts. nom nom
Parking Garage token x3 I had one of those buggers everywhere, just in case, and we had scored a garage pass from social services (ask for one).  Still I never wanted to be that lady at the exit with a screaming kid and a pass that had decided not to work trying to figure out how to get everyone to back up so I could go back in to get a token, it's just unpleasant.  I also gave away a token more than once, because everyone forgets their wallet to come to the hemonc clinic at least once, and it's nice when someone takes pity on you and throws you a token so you can leave.
Snacks laced with cinnamon or unnatural cheese flavor, because that is what the boy ate on chemo.
A spare bottle of whole milk nuked to scalding and wrapped up in a bottle cozy to keep it warm.  It's easier to cool a bottle than warm it in a clinic.  And that child still will not drink milk cold, he's 4.5 now, he quit cold turkey because I won't heat it anymore.
A Drink For Me  you get thirsty too
Daddy's work laptop because free wifi can solve many problems, and daddy arriving halfway through an appt with it, was the awesome
The Distraction Bag it was a free backpack given to us by a local charity with a few age appropriate toys inside.  Our therapist recommended we fill it and save it for just the hospital. I did and it was awesome. He actually looked forward to going to the clinic just so he could play with a mini dump truck that talked.
Paper doesn't matter what kind or size, make sure you have some and a crayon or pen or something.  it will get used.
Robeez I bought the fake ones from target, Josh uncooperative, was a kicker, and nurses appreciate a kick to the face from a leather slip on more than a hard shoe.  I also didn't have to take them on and off for height and weight, which was one less thing to mess with while wrangling a slippery toddler.  I had ones in the hospital diaper bag that I slipped on before I got him out of the car, they were just for the hospital and its special germs.
Camera I always had one, I would take pictures of every appt, to remember for him, to remember for me.  I was able to figure out how many blood transfusions he has had because I always took a picture of the bag when he got one.  If nothing else we could take silly faces photos and entertain him for awhile.  My camera was my companion, it was there at every visit, every chemo, it made sure nothing was forgotten, that everything he went through was remembered, good and bad.  I treasure those pictures of some of our team members that have moved on to different departments or hospitals.  Pictures ended up being one of the ways I was able to reconstruct his journey so he could get all of his beads for the Beads of Courage/Bravery Beads program, after the fact.  


We also took his security blanket and sometimes his favorite stuffed animal.  We tried to keep it all to fit under the stroller.  Our clinic has lots of television and a play area.  For his first tour of duty he was easily entertained, and our visits weren't usually too long that we couldn't make do, or that he might take a nap.

Josh relapsed.  His treatment became heavily in-patient.  I purchased a super bag with wheels and a hard case base for fragile/electronic things that has a duffel bag top for our clothes and blankets and things. It was my admission bag.  It was always 2/3 packed.  I just changed the clothes in it, it had its own toothbrushes and toiletries so I didn't have to repacked it over and over for our every third week admissions.

Hospital Toy Bag a larger version of the distraction bag from the first round, it was a hand made tote we received that had fire trucks on it.  I kept an entire bag of toys that were just for admissions (I hid it in a closet when we got home), his grandma gave him a new Cars matchbox car every time he was admitted, he only played with them in-patient, it was a brilliant plan.  He wanted to get admitted for chemo, new car and access to his trove of cars!  Score!
Hard Sided DVD Case always take your own DVDs, and if you can get a little case so you can pack 20 of them in a small space, it's worth it. We also used a dvd burner in conjunction with our dvr to load up a couple discs of his favorite shows so that we could watch them anytime of day.  Pack DVDs that automatically start over again, we played them at night, it was the only way he would sleep through nighttime vitals checks.
Produce at our hospital fresh produce he liked was restricted, Josh was 2.5-3.5 so he was banned from many of them for choking hazard reasons, or they came in small cups that met his random produce binge appetite disapproval.  I brought my own produce, a loaf of bread and a cookie cutter to make toast (toast from room service was always soggy, and that angered him), and some bottled smoothies for myself.  We usually took over a crisper drawer of the patient refrigerator. I labelled the cloth grocery bag with our last name and packed everything else in ziplocs with our last name. Never apologize or feel weird about bringing in your own food, getting your kid to eat is important.
Snack Bag I brought another cloth grocery bag of non-perishable snacks for him, whatever was his favorite at the time and some things I only busted out at the hospital when he felt the worst and needed more inspiration to eat.  I won't lie, there was a lot of candy in there too.  I also packed chocolates and energy/breakfast bars for myself to eat if I couldn't get a volunteer to watch him while I got something.
Mini Laptop we bought this with fundraiser money, he loved computers, still does.  It was a netbook and it was just his size, pbskids and nickjr and the thomas website would make those etoposide hours he had to sit in bed with a pressure cuff on the whole time, fly by.  It was Josh's prized possession and lived in the bed with him. We are grateful to our family and friends who made this luxury possible, it was such a gift and became a hospital necessity for him.
Fancy Toiletries for Me people gave me these, little samples, and pampering kits, things I never use, but totally used in the hospital because it made a cruddy day better.  
Nail Clippers hospitals don't have them, you'll want them.
Benadryl for you. you too can sleep through nighttime vitals.  Get a system for them, then get a system that works for you too, everyone needs sleep. You may not approve of this, but it is what worked for me, and benadryl is gentle enough to be overcome by any surge of adrenaline I might get from real alarms going off for vitals that were wonky.
A journal/logbook to keep track of what day it is. . .
"Hospital" Pillowcases we got these donated from ConKerr Cancer, but you could use your own.  Josh liked having his own special pillowcases, and now off treatment he still asks for them on his bed on occasion.  When we got admitted, we moved in, it was his room, not a sterile hospital.  It helped tremendously.
Fleece Blankets they dry the fastest in the unit clothes dryer when something unsavory has occurred. I brought two, and tried to keep them in different parts of the bed so one stayed clean.  
Window Crayons better than window markers.  Nothing says "this is our room and we are making the best of it" than writing bad pediatric cancer jokes on your door windows.  Share with your neighbors.
Photos I also brought family photos, and pictures of Josh. I had 8x10s made at costco, slipped them in 8.5x11 page protectors and put them up on our door.  The new nurses loved to see him with hair and when daddy came by they already knew his face.  Other moms loved it too, they'd walk by and then tell me thank you, it helped them remember there is life outside of the unit.  Josh always asked for one particular family photo to be mounted somewhere at the end of his bed so he could always see it, it helped him not miss his sister (she usually couldn't visit due to an age restriction during RSV/flu season).
Slip on Washable Shoes I got fake $5 uggs from the drug store bin.  They were easy to kick off to get in bed with him, or when I slept on the foldamacouchamatron.  I could hop right in them when required and they were washable when I got deposited on by any unwanted fluids.  Besides they completed the "I'm living here" look when I shuffled down to the cafeteria or food court in my pajamas and deluxe clip on/long term parent badge.  


I had necessary items that I brought in through admitting and the rest I would retrieve from my car when a volunteer walked by or a therapy came to visit. Take no shame in moving in if you are going to be there a week, just have a system so you aren't the crazy lady with all the stuff falling out everywhere down the hallway.

My number 1 best addition to cancer round 2, and the thing I still get the most questions about when we visit is my COLLAPSIBLE WAGON.  We get at least 10 inquiries every hospital visit.  It never fails me, it is always in the car, and it can always hold what you need it to.  Both my kids can sit in it, they are 100+ lbs together.  Cancer boy can sit in it or lay in it if sedated or unwell.  Unlike a stroller, he can play in it and the toys don't fall on the floor.  During ER visits, it was his bubble, he was not allowed out of the cart, he was not allowed to touch anything outside of the wagon.  It was his world, and he didn't mind.  I also used it to lug in things for admissions and appts, and it could collapse in a corner or in the bathtub or a closet.  I got mine at Costco, they are stocking them right now, but you can also get them through other retailers for slightly more. My only complaint about it is that you have to make sure little fingers stay off the front edge, you can use the handle to stop the cart for a quick brake, and squish fingers.  That and if you are longlegged you can actually walk too fast and make steering a little unruly, but I'm used to it now.  I loved that if we were in a hurry I could get behind it, bend down a little and push it from behind.  I actually ran like this once to make a consult on the other side of the hospital.  Bald boy yelled "excuse us BEEEEEEEP!" the whole way. We even took ours on our recent roadtrip, we always take it, and it is always useful.  I actually bought a second one, it's still in its box, just in case anything happens to this one, I love it that much.


Always take your camera or use your camera phone, you'll never regret it.   

Newsflash, pediatric cancer parenting, it's stressful

Okay, I'll admit, the magazine I'm going to quote from is dated April 2010, and I am just now looking at it.  One of my few regular splurges that I truly enjoy is my one magazine subscription, to Whole Living (formerly known as Body + Soul Magazine).  During all those tough months I spent being behind and trying to stay on top of things, I neatly tucked each issue I received into the magazine basket.  The magazine basket became the magazine mountain and so I went through and just started recycling everything, old issues from everything, gone.  I kept all the issues of this magazine, because it's mine.

I've been going through a journey I find difficult to share with normals, those sweet wonderful people who still live on the outside of pediatric cancer land, and who frequently acquire a day pass from me to come see what I can manage to share.  Most of them don't and will never understand where I am at right now, where I have been since May 12, 2010, when my son received his last chemotherapy treatment.  But in these past 9 months I've started to realize it goes back a lot further than that, it starts in the weeks before August 19, 2008, when Josh was diagnosed with Wilms Tumor, 3 days shy of 20 months old.

The weeks when I knew something was wrong, and I couldn't shake the feeling that time was running out to find it.  That's when it all started to unravel, I was so, well stressed doesn't cover it, and misunderstandings with family and friends were rampant.  Part of me told myself that was the worst of it, all that stuff I went through trying to find out what was broken inside my child.  As we moved on to treatment I told myself it was all about getting him better from then on and out, the worst was behind us.

How a parent deals with their child's diagnosis and treatment and the life that follows for them, and hopefully their child, is dependent on so many things.  Personality, faith, support networks, occupation, family history, number of children. . .whether or not they like punk rock.  It's as personal and unique as their child's medical history.  The hard part, cancer mom, and you too cancer dad, is it's your journey, and only you can walk it, and you have to do it your own way.  What works for the mom in Room 7 or in the next infusion chair, it may not work for you.

Personally, I never cried about Josh's primary diagnosis.  I teared up after having to tell other people and hear them shatter.  I'll admit I hung up on people when they started weeping uncontrollably, I was fine, but hearing them all be unfine about this really unfine diagnosis, they were ruining my mellow.  I calmly informed my husband that while he was home getting things for Josh that they had come with the papers, that they had informed me it was also in his lungs, I had to speak the word metastasized and watch it register on his face.  I actually held completely strong until our parish priest picked up, I had recently converted, he knew us all by name, and I just couldn't tell one more person who cared about my son, especially the one I knew was going to drop everything and come downtown at one in the morning to see my son and offer a blessing before his surgery, the one scheduled at o' dark holy hell as soon as we can get you scrubbed and on a table first thing in the morning.

I found that tumor days before, and I knew.  I had already allowed myself to contemplate the different paths that may lay ahead of us.  I knew from the ultrasound, but I held a very tiny measure of hope that I was wrong.  They told us to come back later that day for a CT of that "mass," and I knew in my core where this was going, but I smiled and told people over the phone "who knows?"

Holding his sedated little body after the scan, I knew.  The staff, they all knew, and I could tell they knew.  They took us to a different recovery area, I knew, we weren't leaving that night.  They finally told us and my one resounding thought was "What's the plan?"  I wasn't broken, I didn't want to scream, I wasn't overwhelmed, I just calmly wanted to know the plan.  Plans are good, plans are useful, plans imbue purpose.  Show me the roadmap, show me where to sign, tell me what you want to do.  Tell me we have a plan, and it's all good.  I was especially supportive of any plan that involved getting that life sucking mass out of my son asap.  I welcomed surgery, it had been one of my plans.

And that's what I did for the entirety of Josh's treatment, the relapse, and more treatment.  I followed the plan.  I looked down the road, spotted hazards, made contingency plans, brought up everything I could think of with his team.  I made sure the people with the plan, had more plans waiting, that we all had a plan to have plans about plans.

I'm the kind of person who pulls aside the NP and asks "So if, well, I just need to know, if anything ever went really wrong, and I found him dead one morning, unexpectedly. . .well do I have to call an ambulance?  I think that would freak out his sister and really mess her up, could I drive him in and bring him to the ER?"  Yeah, I even made that kind of plan.  You have to know this NP, she knew about me and my plans--and that the contingency plans, and the emergency contingency plans are how I coped.  We walked through several plans, I said thank you.  I had plan, it was all good, that scenario couldn't catch me off guard, I could divert to auto-pilot, I had a plan.

I was always this way and it took a Zen Meditation class to get me to realize, you can't not think about something by trying to stop thinking about it.  The way I can let go of some thing is to acknowledge the idea, let it take the floor, have its say and then tell it, yes, and here's my plan, now please be quiet.  Then I can be calm and silly and whatever else I need to be, me and nagging feelings don't co-habitate.  I'm a "don't identify the problem unless you are willing to be part of the solution" kind of gal.

For all my plans, I didn't have a plan for post-treatment.

I floundered, like a little goldfish moved from a little bedside bowl into a giant aquarium.  Of course I wanted back out into the world, but my mojo was off.  I was used to swimming my little pattern in my little bowl, following the appointment metronome/current.  There was a lot of water out there.  Enough water to feel lost.  Enough water and other normal fish to finally force me to look back and realize that while I was coping and making my plans, that I hadn't avoided something stressful, I had just worked through it, not around it.

What I went through was stressful, I could acknowledge that without negating how hard I had worked at it.

This brings me to my year old magazine and an article entitled "Stop Stressing, Start Living!"  I knew I was going to have to read this article and not skim it when I hit this at the end of the first paragraph ". . . And yet, unlike PTSD sufferers, they hadn't been through any terrifying ordeal.  In fact, they denied feeling overly stressed at all."  I mean we all talk about co-opting PTSD to mean Post Treatment Stress Disorder, but here this researcher was going and say it's real, you can rock something, work through something, think you handle it, and yet still be altered by it.

Two paragraphs later, I snickered, ". . .now we're barraged all day long with demands and decisions.  Lee calls this intense and unabating force 'super-stress.' "  Wow, if they are just talking about a 9-5, then can we cancer parents call what we go through super-super-stress, or perhaps summa-super-stress, gigando-stress?  I dunno, but crushing demands and decisions, yeah, been there, done that.

They do go on to supply a checklist of five things for handling stressors:
1- See stress as a warning bell.
2- Focus on the solution.
3- Know when to say "enough."
4- Have a few cherished rituals in place.
5- Keep family close.

Whether you are out there freshly diagnosed, in the middle of treatment, post-treatment, or cherishing the memory of your beloved--well it's time we all fully read the headline "Pediatric Cancer Parenting is Stressful." Find your rhythm, find your mojo, find your way to keep your rudder under you and find balance, but for the love of yourself don't convince yourself this isn't stressful.

What you are doing matters.  Staying present and centered to make the decisions that have to be made is vital.  But cut yourself some slack.  This IS hard.

When you feel the stress getting to you, don't shove it away just to stay focused.  Listen to the stress, let it be your personal IV pump alarm bell.  The bag is empty or there's a bubble in the line and you can't ignore that.  Get some lunch, call a friend. . .just walk away for a little while.

When all of this reality, this life and death gets to you, focus on the simple solutions.  A balloon, a toy, a massage, a favorite show.  You can't fix cancer, you can't stop the treatment from being awful, but you can sit on the floor with a over-sized bag of dum-dums and sort out all the red ones.  Focus on the problems you can solve.

Every good superhero has a sidekick, and we all need somebody who we know has our back.  Know when you are being pushed to your limit, ask for help before you get there.  Ask a nurse or volunteer or friend to sit with your child and walk away, go find some fresh air or something that will refresh you.  Know when to kick visitors out, stand up for yourself and your child.  Know when to pick up the phone and make a call, and when it's best to just let calls go to voicemail.

Find something, that without fail you can practice to acknowledge how stressful this life is and help you find your way through.  Be it religion, exercise, creative arts, music, or computer games.  Something that you do that brings you back to something you love and to a place where you are caring for you so that you can have energy left to care for them.  We had rituals for in-patient, rituals for out-patient, rituals for our family, and I had rituals just for me.  It doesn't have to be spiritual, it can be driving to the grocery store and walking every aisle to just get a gallon of milk.  If you can look forward to it, if it can be a salve to your heart, cherish it, practice it.

Remember your family is in this too.  Try not to be so busy making the tough choices and shouldering all the stress that you leave nothing else for your family to pick up and help you carry.  Give siblings a job like packing a distraction bag and/or snacks for their sibling.  Allow your spouse to have their role, their part in it all.  Don't let the stress of managing it all drive you all apart and compartmentalize your family.

There is no handbook, no normal to this road.  It is stressful, no matter how awesome you are.
You are allowed to have a bad day.
You are allowed to be furious.
You are allowed to thrive.
You are allowed to falter.
You are allowed to make mistakes.
You are allowed to let others pick up your slack.
You are allowed to crack a little.
You are allowed to not heal up immediately.

You are allowed to take care of yourself.


Most importantly-

You can do this.
You are doing this.

It's a Small World

You might feel like you're alone once your kid is diagnosed. But trust me, it could get weird how small the world gets. Like, six degrees of Kevin Bacon weird.

Take me, for instance. Eve is home from the hospital for a week after being diagnosed with Wilms before I get a call from a friend saying that she heard about an old co-worker whose daughter was undergoing treatment for Wilms. I reconnect with said co-worker (Red Dye #48's Gina) and we wax poetic about cancer, cookies, and YouTube.

A few months after Eve is diagnosed, one of my best friends calls to tell me her next door neighbor's son, who will be in Eve's preschool class of eight, has just been diagnosed with bilateral Wilms. So, 400-500 kids get Wilms each year in the US, and of those, 5% are bilateral. And two of those twenty kids are in the same class and our families already know each other.

Someone contacted me and gave me the email address of Red Dye #48's Melissa early after Eve's diagnosis. We talked for months before my friend (the one with the next door neighbor whose son is in Eve's class) told me she was talking to a local business owner about selling them ad space in a local magazine. I heard the business owner's name a lot and kept seeing it on Facebook, but it wasn't until I looked at Facebook's fun and informative mutual friend feature did I realize that she was a childhood friend of Melissa's.

A neighbor of mine gave me the email address of a friend of her's whose daughter finished treatment for Wilms the year before. The mom also happens to be the teacher of another friend's son at my daughter's school.

This past Friday, we were in clinic hearing the good news that Eve's latest scans were clean. I ran into someone that looked awfully familiar, but it took me a second to figure out who it was. I then realized it was a mom that I had connected with on a message board and had since friended on Facebook. We already had plans to meet and have dinner this week, but now that we met in real life, neither of us needs to wear a red rose.

(I would never in my wildest dreams meet someone in real life who I have "met" online, but the rules are different if you've got stock in Zofran, Clorox, and Emla.)

So all I'm sayin' is, the world is a lot smaller than you'd think. Unless you're in China.

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.

Go ahead and start taking notes...

...because you are on your way to becoming an un-certificated "first responder."

1. Stock up. There is a storm brewing and you need supplies. Become a member of a wholesale club because you will want to buy in bulk. Why risk the germ infested waters more than you have to? There is power in the pallet.

2. Buy one of those really big desk calendars and slap it on your fridge. The one with tear off paper pages, because tearing it off and crumpling it is the reward. There will appointments and medications flying erratically from week to week. (And for my family, the dreaded Broviac care and home maintenance plan.)

3. If your child is lucky enough to sport a Broviac, pick up some Press-N-Seal and a nice waterproof, long sleeve smock. And never, NEVER leave home without your hemostats.

4. Never go home without topping off the gas tank. Cancer has a sick sense of humor. Just get the gas. And keep a bag packed and in the car. Cash is good in the wallet, too. Oh, and all phone numbers to hospitals, doctors or emergency rooms along side the charged phones.

5. Get a haircut. You'll thank me. You will be the last thing on your mind until one day when you will feel your hair graze places it hasn't in years. So you take a look at your hair in the mirror and you look a little longer than you should have. Your brows are wooly, your wrinkles are plenty and yes dear, those are bags.

6. Which leads me into you. Go. Get out when you can. Take your mother-in-law up when she says she will come over for a bit. Go get a shake or a coffee, grocery shop alone or go sit in a dark theater with some nachos and an airplane bottle for your Coke. Don't feel guilty; your child will still have cancer when you get home.

Dude, what now?

So, your kid has cancer. The official to-do list for your first week as Cancer Mom:

1. Acknowledge it sucks. Make peace with the fact that your life is forever changed. If you can't make peace, don't feel bad about a nice bottle of wine.

2. Always carry a spare bag of toiletries in your vehicle. You don't want to go into clinic for an appointment and be told you'll be admitted for the next week. Doctors respond better to those who apply deodorant liberally.

3. Just go ahead and get that portable DVD player.

4. Let people bring you food. Eat it. Don't count the calories; you never know when you're going to be NPO again. That's right, when your child is NPO, YOU are NPO. They can sense an ice chip in your mouth.

5. Let people take care of your other children. Accept as many offers for playdates as you can. They won't come as often when your child is in remission, and by that time, when you have your cancer kid full of energy, you'll miss being able to farm some of them out.

6. Hell, go ahead and ask people to do your laundry. You are officially a card-carrying Cancer Mom. You will want to have clean clothes and sheets on hand for when your child is chemo-drunk.

7. When people ask what they can do to help, TELL THEM. This is not the time to act like you don't need help. Say it with me: "Hey, Friend/Neighbor/Relative, would you mind picking up a prescription/mowing the lawn/bringing me food to emotionally eat?"

8. You are about to become ridiculously self-absorbed. Give the world permission to keep going even without your presence. You'll eventually find out if an oil rig blows up or Lindsay Lohan gets arrested.

9. Grill your oncologist. Grill them like a burger. Become the honorary oncologist you've always dreamed of being.

10. Your world is upside down. It never turns right side up, so go ahead and start learning to get used to the blood rushing to your head.