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.

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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.


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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.   

Pediatric Oncology, the game

My son Joshua has his 1 year off treatment scan tomorrow, June 6th, o'dark hundred.  It's also eerily close to the anniversary of his relapse in 2009, my son has Wilms Tumor, cancer of the kidney that metastasized to his lungs, one of those lung nodules regrew after therapy was discontinued the first time.  The scan will be a chest/abdominal/pelvic CT.  The big donut as he used to affectionately call it.  That was back when we were frequent flyers, when he had a port, when the NG tube placement was just part of the intriguing ride that is the big donut.  Back before he realized he wasn't normal.  Back when "big heart hospital" (named after the logo) was all he could remember other than our house and costco.

Now he has a semester of pre-school under his belt, and he has visited the long forgotten land of the pediatrician's office.  He's had playdates and learned not to stand two inches from your peers' faces.  Joshua has come off treatment to find regular sleep patterns, and nightmares, and anger management, and all the other emotional milestones in line that he paused in progressing through while on treatment.  Joshua has scanxiety.

The kid who feared nothing, the kid who was a veteran, a pro at this oncology thing.  This sweet little curly haired 4.5 yr old melted into hysterics at bedtime, sobbing "I can't take it anymore."  It's been three months since his last scan, an ultrasound, and 6 months since his last CT.  He remembers, and he is afraid.  

We talked.  Eventually.

His biggest fear: Getting an IV in the knee.  He didn't get an IV in the knee last time but he did get it in his foot.  The radiologists like the foot, it's easier to immobilize, if they have shoes and socks on it's warm and the veins are right there, no missing, right there.  If you use emla, they retract, digging on a foot is no fun.  The foot is a wham bam thank you ma'm site.  No anesthetic, but no mistakes, and you take it out immediately, as in it's in for less than 5 minutes.  It's a tough call, but we have gone with it since back when they practically insisted on it for his GFR scans.  

Josh is opposed to this.  Josh does not want an IV.  At all.  He misses his port, his best friend (a topic for a whole other post, suffice it to say he needed therapeutic intervention after his last port removal).  This is where my job as an oncology parent sucks.  I have some choices, but in the end, tomorrow morning, that CT is going to happen, whether Josh likes it or not.  I'm not going to pass the blame and vilify a nurse or a doctor and say I don't want to do this to him, that it's them.  

I've heard day pass-ers (one time visitors to the radiology dept) use that.  It's so not helpful.  "Honey mommy doesn't want to hurt you but the doctors are going to poke you with a needle, it's their job."  That pretty much makes that child hate doctors forever.  I talk straight with my kids.  "Josh, we need the pictures from the big donut to make sure there is no cancer.  We are getting the pictures buddy, and to do that you have to put the red juice in your tummy and get a tubey (IV)."  

More crying.  I concede the foot battle.  I tell him we'll use emla this time, no feet.  I hope they won't dig or use his elbow.  That's not good enough.  What if Mr. Mike or Mrs. Mike (they are a married couple, he came first into our lives, she'll always be Mrs. Mike) or the other nurses in radiology don't listen?  I flounder. . .uh. . .my mind is racing, they'll listen to me isn't good enough.  He wants concrete tangible "no IVs here."  My mind has a moment of brilliance, I tell him I'll get a drawing of a body off of a computer and he can put x's where they aren't allowed, they'll listen to the paper.  Done.  Hurdle 1 down.  

I decided to make him a prince. . or maybe a king. . .they can make edicts.  And this is Josh's edict, no IVs in the foot. . .or the knee.  He's already x'ed up his chart, and I have it clipped to a half sized clipboard ($1.25 at office supply store) that I can fit in my bag.  

Phew, that's done.  And because I made it clear this was happening he accepted it and didn't x the entire chart (I had worries about that).  That's how he works, how a lot of kids work.  Be straight with them, this is happening, but you have a choice in how it happens.  This is all Josh needs, a touch of control, and assurance that he can avoid his worst case scenario if he cooperates.

Onto the other problem.  The oral dye laced fruit punch.  At our institution Josh has to drink 3 doses, 45 minutes apart of about 4 oz (~118 mL) of  punch.  And he needs to consume each in less than ten mintes.  That's less than a standard juice box, but it's still a heck of a lot when you have puked it up a couple times and had it forced on you another few and NG tubes for the rest.  Not to mention he'll be NPO.  Josh wants nothing to do with the fruit punch.

Nothing.

Tube or drink buddy?  

No.  

Tube in the nose or drink it Josh, one way or another it has to get in your tummy.
No.  

Do you just want to do the nose tube (we ended up with it after two sips in december)?  

No.  

Then you have to drink it.  

But it's gross. (the only other options are radiology has are carbonated, he hates soda)

Then you'll have to get a tube.  

No.  

Well then we are back to drinking it Josh, those are the only options.

But I don't want to.

Sorry buddy, those are the choices.

Josh has recently switched to fluoride toothpaste, he misses being able to lay in bed and get his teeth brushed.  We've turned spitting into a bullseye-esque points game.   My kid is obsessed with numbers.  He thinks learning multiplication is fun, in fact I just printed off a multiplication table because he'll think it is AWESOME.  I go with it.  

What if we make it a game and you get points? The crying stops.  Ok, we have a door, a small one.  Now it's the game or the tube.  As of this afternoon, the tube is still looking probable.  We don't mess around.  We aren't going to throw off the whole radiology schedule.  He gets 10 minutes to comply, then it's the tube.  They use a numbing gel, it's not barbaric, and after that he doesn't have to do a thing, we do it for him, no taste.  Today I made the tally sheet, rules, and score card.  I used mL/cc increments for points as we usually score a giant 60cc syringe to drink from. . .because it has numbers and plastic cups don't.

I showed it to Josh.  He is intrigued.  "What if I can't hide?"  Wow, I almost forgot that, several eons ago he had a head CT (low platelets many bruises, started acting funny) and he watched the device inside the CT spin and almost hurled, so we covered his face with his security blanket.  That's how he has done it ever since.  Under a blanket, but no sedation.

So I pull out a piece of paper to make his packing list.  Something from 19 months-4 years I have always handled myself.  Now he needs it, he needs to make it himself and reassure himself that everything he needs will go with us.  This is a whole new ball game.

You have to find what works for your child. What works for my son would probably not work for my daughter.  If our therapist that we had been assigned to and used extensively for 2.5 yrs hadn't moved, I would have emailed her and involved her (we meet our new one tomorrow, and he gets to start the bravery beads program).  Your techniques and coping skills have to evolve through your treatment and with your child and family.  

The key is to walk that line between choice and reality.  Our previous therapist was firm on that.  New nurses used to ask "Is it ok if I take your blood pressure?"  Wrong, Josh's answer, "No."  The correct question was, "It's time for your blood pressure check Josh, which arm do you want to get the hug?"  

Be honest with them about what is negotiable and what is not.  At the end of the discussion, they have to know this is going to happen, that you will do your best to make it pleasant, but this is not about mean doctors and nurses poking them.  Plain and simple.  Tomorrow is scan day.  He will get a CT scan.  Oral dye will find a way into his stomach and intravenous dye into his body.  He can choose how/where the latter two happen, but if he doesn't make a choice we will.  I prefer he cooperate, but that scan is happening.

This is just pediatric oncology, we can hate this reality all we want, how we have to force our kids through stuff, through not normal, but we still are going to have a scan tomorrow.  One way or another.

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.

A Case of the Mondays

Just let me look that up for you, mommy.

This was how I spent the monday after Halloween weekend last year.  We had just been released from the hospital, on sunday afternoon, as in the day before.  Josh had decided to cook up a cocktail of H1N1, along with a relapse flare-up of C. diff, and gotten diagnosed with VRE in his intestines.  When we party, we par-tay.  Honestly it was one of the most miserably sick times I have ever seen him go through.  It also began our 8.5 months of contact isolation, to keep his VRE contaminated poo away from all the other immuo-compromised kids.  Which makes this picture above the first of Josh in what he came to refer to as "Josh's room," or the isolation room to the left back in our clinic infusion room.

It had been a fun weekend.  The nurses and staff had worn costumes to work so it had been an amusing admission to say the least.  I had made several "illegal" adventures up to the oncology unit from our overflow room on the neurology ward, those neuro people just don't have the red popsicle stash they have up on J5.

But Monday was still Monday, and very little to nothing stops the oncology train.  Mondays were hospital days.  Either admissions or clinic visits or scans.  Mondays were a certainty, Josh and I started our week at Nationwide Children's Hospital, 8am sharp, every Monday.  It was our routine.  My last normal Monday was in June.  It's now November.  I still wake up every Monday and think I need to be somewhere, like there is something I have forgotten to do. 

For weeks Josh would wake up to me kissing him awake and ask if we were going to the clinic or day hospital that Monday.  It's what we did.  Now we just don't anymore, and it feels so very strange. It feels a bit listless.  It's amazing how that metronome that you dreaded, that resonating toll that so often felt like a never ending dirge, can turn into a comforting routine, a consistency of annoyance.   Cancer treatment is chaotic, routine is your friend.

My friend ran away.  She was an annoying needy friend, so I am learning to be ok with her decision.

We majored in routine.  I got Josh ready to leave in the exact same process, we took our hospital bag of toys that went with the intended destination, clinic toys for the clinic, day hospital toys for the dayho.  We parked on the top floor of the parking garage, because it is number 5, Josh's favorite number, and the sign is red, Josh's favorite color.  No one parks on the roof at 7:40 am, in snow, but we did.  Because it's what we did.  It was our routine, it gave him control when he really had none.  I always asked where to park, and we always parked in the exact same spot on the 5th floor.  The path to each destination had it's routines, the same signs we would read, buttons we would push, volunteers to get stickers from.  He went to his same little isolation room in clinic after a stop at the vending machine for the candy in slot #54, yes it's been several months and I still remember the position number.  After months he stopped eating the chewy sweetarts, but we still bought them, every clinic Monday, and most Thursdays.

We'd say hello to the crayon signs, and ultrasound, and the ER, and radiology, and fluoroscopy, to the volunteer, and to the security guards, and then to our elevator.  We'd roll up on the floor, the fifth floor, for chemo and we would say good morning to the nurses' station and then head straight to the kitchenette to obtain frozen confectioneries.  Reading the signs loudly, we'd turn into the Day Hospital, where the nurses always assigned him Room #55, the dayho rooms just happened to run through the 50's, and the oncology unit was also on the fifth floor.  We were awash in Josh's favorite number.  The nurses even once made a fake #55 sign to hang over room #51 when we made an unexpected visit.  But it was his home away from home, he liked it in his little hole.  I knew just how to angle the tv, and the chair, and we had stocked the room cupboard with VHS all to his liking.  I was the only one who could see or reach the top shelf in the cabinet, so I kept extra diapers and wipes and supplies up there so I wouldn't have to tote them back and forth.  He never once complained about going there, it was what we did, it was where we went, it was the routine.  You can't fight the routine, it is going to happen with or without your happiness.

Josh could learn to tolerate any procedure as long as there was a routine that could be repeated in meticulous detail.  Don't you ever forget to put the "seatbelt" on his port needle, or there will be wailing till you take off the dressing and fix your egregious error, because, no, you can't just put the "seatbelt" on top of the dressing, it goes on first, then the dressing.  For every procedure we had our routine, and the nurses knew them all.  He even memorized the flow rates and run times for his chemotherapy treatments and would tell the nurses what values to enter, and what button to push to reach the correct sub-menu on the IV pump.  He was even allowed to push "OK" and "Enter" here and there.  He knew exactly where to stand for each scale to get the fastest weight reading, the spot on the floor for each measuring stick.  Routine.

If possible at your local health care facility, enact as many routines as possible.  Pick a day of the week and stick to it.  Always.  Even if it makes you hate that day of the week.  Always buy your parking token first, or on the way to the car, but make it the same, every time.  Even if your child is screeching through a procedure and there is biting and wailing, do it exactly the same way.  Restrain the same way, do things in the exact same order, announce them as they are happening.  "Ok Josh, the tubey is in, we are just checking for the red worm, then the seatbelt, your big sticker, and then you can put your train stickers on top."  Little ones need that routine, to assure themselves how much more is to come, that the unpleasantness will stop.  After about 5 months of port access hell, and developing and trademarking the "Josh Position" for port accessing restraint, he just decided to stop fighting and sit there quietly, all by himself in the infusion room chair, only 2 years old, and hold the vials for them while they got him accessed.  While he announced each step in the routine.

Our local Costco employees had to get the domain to our family blog.  They are in withdrawal.   Mondays always meant Josh would be in for his post-hospital smoothie.  Without fail.  Every Monday.  They miss the metronome too, but they like the hair, and lack of mask a touch more.

Find your routines.  Be it a special band-aid to herald de-accessing, or that you break into Hammer-time every time you pass the door for ultrasound, make them together and settle into their comforting powers.  Knowing the purple Blues Clues tape is the one we put in when they hang your last chemo of the day can have amazing power, especially when the next stop is smoothies.  Have your steps in each process, your landmarks, your celebrations.  Oh and the roof of the parking lot at 7:40 am is a great vacant place to run around and play follow the leader, and jump, and shout before a week of sitting in a little room and getting poisoned and carrying your IV pump home every night.  All the cool kids park on the roof.

Mondays aren't "big heart hospital" (their logo is the nationwide insurance logo with a heart in it) days anymore, but ask Josh about the weekend and he will tell anyone "On Saturdays and Sundays I take my Bactrim, one times in the morning and one times before I got to bed."  Dare I say it, a day will come, when we will miss the Bactrim metronome too.