Saturday, August 13, 2011

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.