September is pediatric cancer awareness month.
I'm aware.
I'm aware kids get cancer.
I'm aware those kids get poisoned or radiated, or both.
I'm aware some of those kids die, every day.
I'm aware that moms and dads are out their right now, about to find out their child has cancer.
I'm aware that today a mom will hold a basin as the chemotherapy makes her child sick, again.
I'm aware that tonight a father will visit the grave of his child, another causality in the war against cancer.
I'm aware.
I'm aware a child can go from an ache in their leg to bone cancer with one scan.
I'm aware that a boy will miss the homecoming dance this month to undergo immediate major surgery to remove a tumor he didn't know was there.
I'm aware that before this month of awareness is over a girl will have to become aware of her own mortality, and then die before her dreams have time to come true.
I'm aware that no one wants to think about what it would be like to hear "your child has cancer."
I'm aware that no one wants to watch as the nurses wear protective clothing to keep them safe from the liquid they'll be infusing into your child's bloodstream.
I'm aware that no one wants to hold their child as they take their last breath on this earth.
I'm aware.
I'm aware that we need better diagnostics.
I'm aware that we need better treatment standards.
I'm aware that we need new tools to fight for the ones that have no hope.
I'm aware we need support for families on that worst day of their life.
I'm aware we need meals and mentors for those in the trenches.
I'm aware we need to never forget those whom we've lost and the parents that will long to hold their child again.
I'm aware.
What will you do now that you are aware?
Do you have time you could volunteer to a non-profit group or event, or spend with a family?
Do you have a talent you could contribute to help raise awareness or funds, or help a child smile today?
Do you have money you could contribute to a fundraiser or a family in your region?
Awareness isn't enough. We need Action.
a resource for those thrust into the world of pediatric cancer
Monday, September 19, 2011
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:
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.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
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.
Wednesday, July 13, 2011
Party now, sleep later.
Party hard with your kids, while you can.
Drink coffee in the morning.
Repeat.
Skip a bath if it means you get to snuggle down a little longer with that dirty child.
Take a moment to appreciate their energy. Drink some coffee and try acting like that yourself.
Make time to eat crap food together.
Repeat for the moms who don't get to do this anymore.
Are you caffeinated yet? Are you ready to hike? Are you looking for a challenge? Think about joining the Ultimate Hike to benefit CureSearch.
Train now, sleep later.
Thursday, June 23, 2011
The Elitist.
We all have those days. It is a gift from cancer to slip into your dark corner with your evil pie, let your inbox runneth over or have temporary bi-polarisim. I get it. I got it. Not right now, but the subject of this post almost drove me to crazy. This post is not about those days, it is about an encounter I that shook my mental stability.
I recently listened to a fellow cancer mom speak from a day that shook her earth. Hearing a doctor speak the word cancer while referring to her child was a moment in time that will forever etched in her heart. Her words wreaked many familiarities, making those little suck bells chime.
It made me think about this cancer mom snob I met.
Most of us cancer moms can relate as we read blogs from afar or have an instant bond upon personal introduction or the swapping of our child's dx, treatment protocol or spittin' some oncology game in the clinic. You know, like throwing up your gangsta sign and nod to show respect.
And I say most moms, because some moms have put themselves above other moms somehow, and cannot feel connected to the others that haven't been as far as they. So they say. I say I don't get it. Each day, my heart aches when I think of the families that will start their journey with a new dx and the ones that will forever walk without their child. I think about that everyday. Every. Day. Some days I hate that I know the devastation of what childhood cancer brings, other days I hate myself for not knowing earlier in my life. But never do I put myself before someone that knows what chemo smells like on their child's head.
I recently listened to a fellow cancer mom speak from a day that shook her earth. Hearing a doctor speak the word cancer while referring to her child was a moment in time that will forever etched in her heart. Her words wreaked many familiarities, making those little suck bells chime.
It made me think about this cancer mom snob I met.
Most of us cancer moms can relate as we read blogs from afar or have an instant bond upon personal introduction or the swapping of our child's dx, treatment protocol or spittin' some oncology game in the clinic. You know, like throwing up your gangsta sign and nod to show respect.
And I say most moms, because some moms have put themselves above other moms somehow, and cannot feel connected to the others that haven't been as far as they. So they say. I say I don't get it. Each day, my heart aches when I think of the families that will start their journey with a new dx and the ones that will forever walk without their child. I think about that everyday. Every. Day. Some days I hate that I know the devastation of what childhood cancer brings, other days I hate myself for not knowing earlier in my life. But never do I put myself before someone that knows what chemo smells like on their child's head.
Wednesday, June 15, 2011
My Oncologist, the Poet
On May 5th, 2011, I was given the chance to say a few words about my daughter's oncologist at a fundraiser hosted by Gregory & Jeannie Trunz, in memory of their daughter, Allison. This year the dinner happened to be honoring my baby's doctor. The 14th Annual All-Is-OnE Dinner raised over $100K for an incredible organization based out of New York City called Making Headway. Making Headway personally helped Minty and I in countless ways, big and small, expected and unexpected. I was drowning in help when my daughter had cancer, and it wasn't always good help. This is why Making Headway really stands out with what they do, from commissioning studies, to providing support groups for siblings, to providing a reiki masseuse in the hospital, and everything in between.
Mei Lai Hippisley Coxe
Minty's Mummy
My daughter, Minty, had a brain tumor removed when she was 6 weeks old, in August 2009, and 2 weeks later she was diagnosed with brain cancer.
In the ensuing days, we had the privilege of consulting with top pediatric oncologists of the world, many of whom were not only in America, but New York City itself. (I have the Cheathams to thank for that list.)
We went through the motions of getting second opinions, not really expecting a different diagnosis than the initial one of medulloblastoma at Columbia. However, Memorial Sloan Kettering and NYU both came up with ependymoma. This of course resulted in more rounds of meetings with Columbia, Memorial and NYU, as well as a barrage of emails and phone calls with oncologists in other parts of America. We were immediately saturated with statistics & schedules, numbers & timelines, and protocol and drug names that sounded like a Dr. Seuss language.
Our first two meetings at NYU before choosing any oncology treatment or hospital, were with Dr. Allen and Dr. Gardner. Dr. Allen did most of the talking, while Dr. Gardner sat quietly in the corner of the room - in fact, one could almost have mistaken her for Dr. Allen’s assistant. So it was surprising to discover in further research at home, that Dr. Gardner had co-written the Head Start Protocol with Dr. Finlay. Head Start is a high dose chemotherapy regimen ending in an autologus stem cell rescue of destroyed bone marrow. The aim of this protocol is to avoid radiation in children under the age of 10 yrs old. It was currently in it’s 3rd generation, and was being recommended for either diagnosis by NYU and Columbia, as well as an option by Memorial Sloan Kettering if we did not want to use the radiation they were suggesting.
Already in awe of Dr. Gardner’s humbleness, Minty’s father asked the doctors at NYU during our final round of meetings, what their definition of success was, beyond being ‘5 years cancer free after treatment’. Dr. Allen and Dr. Gardner replied that it would be for Minty not only to be alive and cancer free, but to thrive, to have all of her faculties intact, in short - “...for Araminta to fulfill her destiny.”
Well, this catapulted them into being, not just doctors who were curing babies and children of cancer, but poets.
Sharon Gardner’s pager number entered my speed dial list on September 22nd, 2009, and she swiftly became a daily part of our lives. Dr. Gardner truly engaged with Minty, taking the time to talk & play with her, and make eye contact, even though Minty was barely 2 months old when they met. Minty loved the attention, and was always happy to see Dr. Gardner, Kelly Ann and all her other friends at the Hassenfeld Clinic. Throughout treatment, we could page Dr. Gardner twenty-four/seven and always got a call back within 15 minutes. If Minty spiked a fever at 5am, Dr. Gardner would answer the page and have us pre-admitted by the time we got to the hospital 20 minutes later.
Minty completed five of the six rounds of Head Start with flying colors, when a baseline MRI showed new tumors that had grown whilst receiving high dose chemotherapy. She was pulled off the protocol in March of 2010.
Dr. Gardner navigated the impossible task of explaining this news to us, which hit me harder than the cancer diagnosis itself. This has to be one of the truest measures of a doctor - one who cares not just for the patient, but the person too. One who can be present not only when things are going well, but also when things fail.
Amazingly, Dr. Gardner would visit with us at home over the next three months, even though we were now under the care of a palliative doctor. She would simply sit, and hold my daughter, and see how we were doing.
The day of Minty’s death, Dr. Gardner went above and beyond; filling the role of hospice doctor, caregiver, and social worker. I had refused to accept the new palliative-hospice team into our lives, and Dr. Gardner, thrown into a situation, on her one day off, quietly filled those missing shoes on July 11th, as we said our goodbyes to Minty in the apartment she had lived and died in.
While it would be wonderful to focus solely on the success stories, and survivors, I would like to commend Dr. Gardner for continuing her life saving work & research despite the high stakes. To face the reality of potentially losing patients, on a daily basis, yet still keep going, requires an unwavering dedication, strength, and compassion we are all lucky Sharon Gardner possesses.
The 11th Hour
If you had run out of treatment options, would you go visit Burzynski?
You can watch Burzynski: The Movie here for free until June 20, 2011.
If you don't want to watch the film but would like to learn more, I promise Google will not disappoint with the number of hits you'll get upon typing "Burzynski." We'll publish your thoughts about the subject in a future post.
Sunday, June 5, 2011
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.
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.
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