Monday, September 19, 2011

Aware

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.



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.

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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.


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

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.

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.  
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.

Tuesday, May 31, 2011

Why do you Relay?

There are many foundations out there. They choose where the money you raise for them is used and how. We all have choices. I choose to give my energy in a few places. This is just one. A really good one. CureSearch is essentially COG; Children's Oncology Group. Google, oogle  and smoogle..this is where it counts people.

I don't.

I did.

Once. I knew I wanted to raise money for childhood cancer research and make others aware of how many people cancer effects. Young and old Survivors, caregivers abound. But Then I started poking around and found out that Relay; American Cancer Society gives our bald children 3 pennies to split between ALL PEDIATRIC CANCERS!!! So I looked further into other "areas" for us to push efforts towards.

So, why would you Relay?

We can raise some serious dollars in the name of our children by CureSearching. Yes, CureSearch uses 97 cents of every dollar raised for research and education for our hairless babes. WOW. Overcompensating for something? Naw, it's what should happen in the case of the ever rising cases of pediatric cancer each year. You know, the #1 cause of death by disease in children. And if we don't fund the Children's Oncology Group, who will?

Don't ask the government. I mean you can, CureSearch does with many parents beside them in DC every year, but they are all tied up at the moment, spending money on deciding which program to cut next.

Ask your friends, family and your fb world. Ask your church, schools and the strangers that come to your yard sales...put up signs, create a collection jar at your home events or parties...I'm sure that jar will be full at the end of the night, just like bellies of your guests that are eating your delicious food and being entertained free of charge.


If you are into playing a good game of kickity-kickball, CureSearch has that to offer too. If you have children in school, approach your child's teacher with this. Good for school going kids of all ages. Yes, you hipster college young adult, working hard to bring it back old school, you can tell your parents "it's for a good cause" and mean it.



For the outdoor enthusiasts, there is even a full day hiking event. Two of us Red Dye Moms are going to raise money for an Ultimate Hike over the next few months, for an October event. Yes, we're taking bets on who can make it further. There is the "baby hike", which is half of the 28.3 mile Ultimate Hike. I will probably have to hang up my flops and find something to support my ankles, but this girl could use a great reason to buy a new pair of boots. I understand the day prior and the day after is a bit of a food party. I'm in, in innedy-in. And if you want to place a bet on your horse, we'll post a link in the near future for the two mamas putting on their hiking boots and packing their granola for the bald babes.

Monday, May 16, 2011

Living in the Middle

You met me at a really strange time in my life.

I'm not in the throes of it all, but I'm not so far away that I can't still smell it wafting through the air. I don't know if I'll ever get that foul stench off my jacket.

I'm living in the middle, but it's hard to walk that tightrope.

I keep making plans for the future. The distant future. The future where our kids will have to fill out their own medical histories and will have learned to spell all of those things that once coursed through their veins. The future where there are graduation parties and weddings and grand babies.

The future where they take us, old and fragile, to the doctor. The future where they plan our funerals, and not the other way around.

But part of moving ahead is knowing where you've been, so I can't let myself get too comfortable daydreaming.

I don't want to think about it coming back, but that doesn't stop my mind from going there. The further out you get, the chances of it returning go down. But that isn't much comfort for the parent whose child happened upon it in the first place. Chances were slim back then, too.

There's only one thing I know for sure: no amount of shampoo is going to get that smell out of your hair.

Wednesday, May 4, 2011

All Aboard the Donut Ride

Dumbledore shares with us the difference in perspective between mother and child on scan day.

Little Warrior, age 5, is very excited about tomorrow. She has tried on several outfits, discarding those with metal snaps or metallic glitter, trying to find just the perfect one for her outing. “I need to have a snack before I go to bed,” she reminds me. She’s giddy. She can’t wait. Tomorrow, she gets to go on “the donut ride.”

Looking through my eyes: tomorrow, we will get up at the insane hour of 5 am and drive down to the hospital where we have spent a significant amount of time and money over the last 5 years. Tomorrow, Little Warrior will be NPO – no food or drink. Tomorrow, Little Warrior has scans, and an echocardiogram. Tomorrow, she’ll have a needle jammed in her arm, and will have to drink 3 cups of contrast. Tomorrow is the first time she’s gone a whole 6 months between scans. Tomorrow, our lives could completely change. Again.

Looking through her eyes: tomorrow, we’ll get up early and drive to where she’s had a lot of fun, and see people she really likes, like Dr. M. She’ll get to drink 3 cups of Sprite, and watch tv, and then she gets to go on the “donut ride,” that slides back and forth. She’ll get lots of praise, and stickers, and probably even a little toy, because she’s so good at doing things like being still and holding her breath. And when they put the iv in, she’ll get to show them how she doesn’t even flinch! Doesn’t even say “ow!” And then we’ll go get a real donut, and chocolate milk. And then she gets to lie in the dark and watch the Disney channel while someone slides something across her chest. And THEN, we get to go to the cancer clinic, and sometimes there’s art people there! Or musicians! And all the nurses will talk about how much she’s grown. And she’ll get to see Dr. M, who will want to know about how’s she’s been. She’s so excited, she’s planning on sleeping in her shoes.

Cancer Parents, this is for you. We have so much to worry about. But you maybe can mark “crush her spirit,” or “make him fearful,” or “traumatize them,” off your list. This is their journey. And hopefully, they look at it with different eyes than we do.

We are happy to report that Little Warrior is still NED!

Friday, April 29, 2011

The Great Debate

This month, Kristen LaBrie was sentenced to 8-10 years in prison after she withheld medication for her son's cancer, resulting in his death. This story has gotten us all thinking, "What would WE do in that situation?" There are many answers, and the following are two opinions from both sides of the fence. To read more about the LaBrie story, click here.



I just have to share this with a group that would understand the angst I feel. There is a current courtcase that issued a verdict of guilty to a mom who withdrew meds for her son with autism who was also fighting non-Hodgkin’s lymphoma. He was given an 85% chance of recovery and had obtained remission before she withdrew drugs. It relapsed and her son died. I feel the same way reading this article that I did the first time I took Josh to his first burn clinic evaluation. Josh was severely burnt at 15 months, and it was his treatment therapy that allowed us to discover his tumor, before it metastisized. (Talk about a mixed blessing.)

Anyway, after severe burn and skingrafting, you are given very strict orders when released from the hospital, including not going out in sunlight as the tender skin will burn quickly and seriously. At our first visit, we bumped into a boy who was in the next room...whose screams at night brought me to tears. His mother ignored the instructions, let him go to a Memorial Weekend picnic - all day - and the burn that resulted was actually worse than his original one.

This mother with the son with lymphoma was given an 85% chance of life for her son, something I would have dreamed for my son. Instead we were told "numbers don't always hold meaning when we are talking about kids. Even if he only had a 1% chance at survival, we will assume he is that 1% unless his body tells us otherwise." It was a gift from God to have that attitude, but what that didn't say was that my son actually only had a 15% chance to survive.

To also be given the term remission seems like a second Godsend. I remember how odd I felt given the term no evidence of disease. Yes, it was a great victory to be told we can't see anything. But it is an odd sense of relief mixed with worry about what if they can't see it? Remission always felt like such a stronger term...I always envied people who got that stronger statement of success.

For myself in the end, I think the emotion I feel is just such a strong sense of sadness for this child. Regardless of the side effects, regardless of the difficulty, I resigned myself immediately to the idea that I didn't get the luxury to worry about side effects, discomfort, etcetera. Lack of treatment equaled death. My son had to be alive to experience his side effects.

I remember the two hours I cried when we learned of his moderate to severe hearing loss. My wonderful audiologist allowed me to stay in her office saying "you can stay here for awhile and grieve his hearing loss before you re-enter the world of a mother of a cancer patient fighting for his life."

And afterwards, when the accutane caused issues with his sight and I was saying My son can't be hard of hearing and blind if he survives to the doctor who oversaw the therapy. The worries were severe. But even then I never considered stopping treatment; this was the only proven therepy at the time for neuroblastoma. In the end, despite being the side effect kid he proved to be, the sight returned, and our doctors decided on a great course of action that was awesome for us.

I guess in the end, I credit my ability to stay in very close touch with my specialists, and communicate all of my worries. We found the best options possible, and accepted the rough road we had. I realize that my responses are only one of many, and not all parents are as lucky. I respect all responses, because this world of cancer is a god-forsaken place for anyone. It is hell on earth. But it makes me so sad for these kids when the chances are in their favor to survive and thrive, and other choices are taken. It makes me cry for these special angels. In the end I hear myself whispering to this mother If you only could realize how lucky you were, you wouldn't have been so careless. It's not fair to say I know, just honest. And I cry for myself, for
having been in a position to make such a statement. And grateful to have my son asleep, curled up with our dog. I must give him an extra hug when he awakes.

-Mary Beth Collins


My perspective on this is a little different.

My healthy child was diagnosed with NHL at 4 years old...I was quoted similar 'rosy' survival rates straight off the protocol. But our oncologist never bothered to delve into the prognosticators specific to my child - like skin and medastinal involvement and LDH>800 (Tommy's was 1600+ at Dx). If he had, the odds of curing my child with that protocol would have been much, MUCH lower. This was something I discovered when we were blind-sided by a relapse 9 months into the 1-year protocol.

What I wonder is how could severely, non-verbal autism and PDD have played into the 85% cure rate?

And I remember cajoling, begging, bargaining, pleading, and waking my child up in the middle of the night to give chemo... It was very hard at times- and my child was very reasonable. I wonder what it would have been like if he had been developmentally delayed and perhaps fought me every step of the way?

They said she completed the first 4 phases of treatment, but she failed on the 5th maintenance- sometime in the 2nd year. What happens in maintenance? The visits reduce to once every 3 weeks for the 'big' chemo by IV and you go home with mountains of very expensive oral meds that you have to organize and schedule like a nurse. Not an easy task, especially for someone without medical training.

For me, it was a little over a year into chemo when I finally realized that the goal of the multiple years of chemo was to walk the fine line between killing the cancer and killing the child. When it dawned on me that they WANTED his counts to be continuously low, I started joking with the nurses when we would go to the hospital for chemo "Hey, he's feeling great, his counts are good, it must be time to hit him again!" It was the sadistic truth of what we were doing to my child.

Maybe this woman heard "remission" and thought everything would be fine. She said he "looked better" when he wasnt on the meds. Well, of course he did! Maybe the steroids made his autism worse, do we know? Maybe the mother didn't understand that the purpose of the prolonged and repeated torture by chemo was to keep the beast at bay? And how the heck did the doctors go by that long without noticing that the child's counts were probably higher than they should have been???

Or maybe she just had to decide between dinner for her family vs. $20/pill for Zofran.

I think the media has presented a sensationalized version of the facts and I have more questions than answers. Before you applaud the judge for throwing the book at her you might want to consider what this verdict does to YOUR rights as a parent.

And before you throw her into a nuclear reactor you might want to walk a mile in her shoes.


-Holly McCrea

What would YOU do? Feel free to email us at reddye48@gmail.com and let us know your thoughts.

Thursday, April 7, 2011

Holly Takes on Washington

Holly Schwab is mom to Zach, neuroblastoma survivor. She runs Zach's Toy Chest, which provides new toys to kids in the hospital. This year, Holly and Zach stormed Washington. You can follow her family at Holly's World.

So I decided to take Zach to Washington DC for our first Childhood Cancer Awareness and Advocacy Day last week. Boy did I underestimate what I was in for. First off I was completely caught off guard with my emotions when I arrived at the information session on Wednesday. For some reason I thought the group of parents participating would have their kids with them - I was wrong.

Our family seemed to be in the minority because Zach had survived his battle with cancer. Good thing I had packed my tissues, because after listening to several speakers talk about their kids who had passed and why they were doing what they do now, it was tough to hear. Then I thought about what a wuss I was sitting there crying when I still had my kid 3 doors down playing with the 1 or 2 other small survivors that had come to DC. It was time for me to suck it up and pay attention to the detailed statistics the speakers were telling us.

Stats such as pediatric cancer research being considered a "discretionary program". Say what? Since when did finding a cure for cancer become optional? Maybe if their kids had cancer they would see it differently - but that isn't something I'd wish on my worst enemy(if I had one).

We reviewed 4 main reasons as to why we were in Washington:

1. To ask our Senators and Congressional members to maintain funding or fiscal year 2011 and to increase funding in 2012. We asked this because each year 13,500 kids are told they have cancer and more than 40,000 kids undergo treatment for cancer each year. There are more scary facts that we laid out to our representatives too. The impact of not maintaining for 2011 and increasing for 2012 is that kids with cancer will not have the best treatment options and will suffer from the lack of research.

2. For our Congress members to join the Congressional Pediatric Cancer Caucus and be a Congressional champion for legislation benefiting children with cancer. All Congressional members need to be part of this caucus since it is bipartisan, creates awareness and educates our members. If we as parents to a child with cancer didn't know this information, how do we expect Congress to - unless we tell them?

3. We need Congress to cosponsor the Creating Hope Act to encourage drug development for pediatric cancers and other rare pediatric diseases. This legislation has bipartisan support and does not require an appropriation. This Act was introduced the morning we hit Capital Hill and there was no better timing. This Act doesn't require any money from taxpayers - at all! What it does do is generate market incentive for drug development through a "golden ticket" - a priority review voucher for pediatric rare diseases. Under this program, a company that develops a drug for pediatric cancer and receives FDA approval for that drug also receives a voucher. That voucher comes with rights to a faster FDA approval for any other drug (like another heartburn or allergy medication), which results in the drug getting to market 4 months earlier. These vouchers are worth hundreds of millions of dollars...I think that may be the incentive these drug companies need to help our kids. Whatever works people! I happen to think this is an ingenious idea and wish I'd thought of it myself.

4. We also asked for Congress to cosponsor and adopt the "Childhood Survivorship Research and Quality of Life Act" formerly HR2109, which is scheduled to be re-introduced later this year. This one is a biggie because now that Zach has survived childhood cancer, he faces many late side effects. 3 out of 5 kids who survive cancer suffer horrible late effects such as secondary cancers, muscular difficulties, infertility, heart failure, kidney damage, hearing loss, memory loss, permanent low immune systems, develop autoimmune diseases and a host of many, many more. As a direct result of research done up to this point, we've got loads of kids surviving each day. This means we need research done to help the survivors. Right now we're at a standstill - I've survived cancer...now what? We need to figure out "what" and allow our kids to grow old and change our diapers when we're as old as...I don't want to think about what that age might be.

Thursday morning came and as I found myself to be nervous...no time for that - got to get my big girl panties on and get this show on the road! We rush to get to the hotel in time to make the shuttle (which we make only by seconds and have to ask them to hold it while I go park and run through the parking garage like a mad woman with an empty stroller. Zach and Mama got put out on the curb so they wouldn't break a sweat.) We arrive at Capitol Hill and start our hike to the first meeting of the day. We heard a 12 year old boy do a speech about how he survived cancer 2 years earlier and was here to help us sway our Representatives to see our point of view. This kid was amazing. No other words.


We move on to our first Senator meeting with Richard Burr's office. This meeting was so weird. It didn't really seem to have a 'start'. The aid we met with, Jennifer Nardi, met us and just sort of looked at me to begin...and I choked. Had no idea where to start. Where was that lady in our group who said she'd start and end for us in the meetings? She was late, that's where she was. I managed to get through a jumbled start and thankfully another set of parents picked up the message for me and we were able to get all our points on the table. I got the impression Jennifer Nardi was not interested in our group or our message. However, we made her sit there and listen anyway. The other family in the pic is Christy Griffith, Eve and husband Matt. Eve had a different cancer and was treated with the same chemo drugs as Zach, as was a older survivor of leukemia (29 years survived!)...see the need for more research yet?




Then we were off to a good lunch of chicken strips, fries and cheese pizza. Those were some good chicken strips - worth all that walking back and forth all day! We went to Congressman G.K.Butterfield next and met with his aid, Meredith Morgan. She was full of energy and I felt like we really had her attention in this meeting. She took notes and even asked questions we were able to answer. Made me feel a bit smarter up on the Hill.

*Update* Meredith sent an email letting me know Congressman Butterfield was on our side.

'I really enjoyed meeting you all today. Thank you for taking the time to come all the way up to DC.

I passed the information on to Tonya, our chief of staff, regarding what we discussed and she is going to review it tonight. Also, I read your children’s stories and I am so sorry. I can only imagine how difficult that is to go through for everyone involved.

I know our office is behind funding the best cure for pediatric cancer. The one piece of news I already have is that we are in support of funding NIH at the current level. We just signed a letter today in support of funding NIH at $32 billion (the President’s proposed FY 2011 was at 32 billion but as I am sure you know ,there has been no final vote for FY2011 by congress. FY2010 for the NIG was 31 billion) .

Please know that our door is always open.'

I have since written her back reiterating our message and thanking her for the support.


After this meeting, we had some time to kill so we took our time getting to Senator Kay Hagan's office. I took some random pictures during this walk...



What's the 1st thing you notice in this picture??? We were lucky enough to be stopped twice that day for the President coming and going down the street...whoever this guy stops wouldn't be what I call lucky.






I really took notice of all these damn stairs around Capitol Hill...maybe it was because I had a kid in a stroller to lug around all day...what do handicapped people do here? I finally found a ramp at one building at guess what...it lead me to the base of some steps.




This certainly explains a lot about people in Washington...




Zach's new friend and partner in crime, Eve.





So we arrive at our last meeting of the day, Kay Hagan's office, and we're prepared to deliver our message to Senator Hagan...but she is a no show (she had to run home to NC). We ended up meeting with a competent aid named, Tracy Zvenyach - who is also a nurse and had a great working knowledge of what we were talking about. Another Mom that was there brought an email from Senator Hagan's office to attention and promptly told the aid that the letter was wrong - all the info Senator Hagan wrote about was for adult cancer - not childhood cancer. We hope the Senator has been informed of the error and will now cosponsor our Acts so she'll be more informed in the future.

We were very fortunate to have an adult survivor of leukemia. She has survived 29 years and actually had been treated with the same drug Zach was, as well as Eve - and they all had different types of cancer. She shed TONS of light on why research is needed for the survivors too.








The kids were wild by 5pm. This poor girl looks like she was ready to make a break for it when we left! At the end of the day I think we really made an impact on Capitol Hill - for better or worse, we made one. I ask that each and every one of you write to your representatives and ask them to maintain the budget for the rest of this year and to increase it for next year. We need the research. Simple as that. I'll update about responses I receive as they (hopefully) come in. Thanks for your support and encouragement. We need it!

Monday, April 4, 2011

Wigging Out

With St. Baldrick's season in full-swing, it's important to know where your hair donations are going. Dumbledore has just the facts, ma'am.


Why I Don't Support Locks of Love

Okay, I've been meaning to write this post for a couple of years, but it seems like someone has always just cut their hair and donated it to Locks of Love, and I really didn't want to offend anyone, or make them feel bad.

Buck up, Dumbledore. Tell 'em how you feel.

I love the idea of donating your hair to a charity. It's something so meaningful -- you're donating a part of yourself! And we girls, well, we've been raised on this notion. It's Della in Gift of the Magi and Jo in Little Women. It's putting someone else before your own vanity. It's lovely.

My problem with Locks of Love is that I think most people who donate are doing it under false assumptions:

a) Their hair will be used to make a wig
b) Their hair will be used to make a wig for a child with cancer
c) Their hair will be used to make a wig for a child with cancer, donating it to them for free

Now then:

a) Chances are good that your hair is either sold to a wigmaker or thrown away. (I read somewhere, but sorry, can't remember the source, that most American hair isn't good for wigs because we wash it all the time, use hairdryers, etc.)
b) The primary purpose of Locks of Love is children with alopecia. They donate their wigs to children with permanent hairloss, not the temporary loss caused by chemotherapy.
c) Not necessarily. For many, they are sold on a sliding-fee basis. One sends in an application, tax returns, medical diagnosis and two letters of recommendation.

Unlike some, I don't consider Locks of Love to be a scam. If you donated, you did a good thing. Children with alopecia deserve something that will make them feel more normal. (Although, maybe it's the Universalist in me, but I have an issue with requiring two letters of recommendation just for something to feel like you're a normal kid. But that's me.)

My problem is that there is a wide chasm between what people think Locks of Love does and the reality. Verisimilitude! This is one case where you can "blame the media" who don't even do the most basic investigation -- I mean, most of this information is on Locks of Love's own website. But the media continue to promote misinformation, such as in this article:
"...he and several members of their Unitarian congregation decided to grow their hair for Locks of Love. The nonprofit organization provides wigs for children who lose their hair during chemotherapy."
So, if you have long hair and you specifically want to help kids with cancer, what to do? Well, I have some answers.

1) Donate it to Wigs for Kids.
2) To donate it for an adult going through chemo, donate to Pantene's Beautiful Lengths.
3) Best yet: Sell it and donate the proceeds to CureSearch.

Thursday, March 24, 2011

A Consult in Port Charles

Dumbledore is back and she's scratching her heads with the rest of us about the new General Hospital storyline.

In amongst a very busy week, I have also been watching a soap opera. A soap opera I’ve never watched before – why the heck would I do that?

You guessed it. Wilms tumor.

Despite being the second most common type of childhood cancer, Wilms is considered rare. Most people have never heard of it. I certainly hadn’t. It’s a shibboleth. If you know the word Wilms, either your kid had it…or you’re a pediatric oncologist.

So, most of us learn to say “kidney cancer” when we’re talking to “civilians” in the war of childhood cancer.

Well, on General Hospital this week, they actually used the word. I heard the buzz, so I checked it out.

Which is worse – no information about Wilms out in the world, or wrong information?

Hey, it’s a soap opera. I don’t expect to see 6-24 months of treatment, or the moment when you realize that the reason your child looks so … different … is because they’ve lost their eyelashes. I don’t expect to see the mom making a 2000 calorie milkshake in a pathetic attempt to add some weight to their kid.

Even the most dramatic – and completely unrealistic/wrong/stupid part of the story arc – didn’t faze me. Another child is mortally hit by a car, so his kidney goes to the Wilms child. Presto! Instant cure for cancer!

You know, even that flight of fancy didn’t bug me too much. Because having nothing to do with this show, when your child is diagnosed with Wilms, if you’re lucky to have a lot of love in your life, you’ll probably have at least one person offer up a kidney. And you’ll thank them, and explain that the doctors don’t treat Wilms that way, but you’ll both go away with a warm feeling.

No, the part that bugged me was when the mom began railing that she had to get a donor kidney, because otherwise, (escalating anxiety), they were going to start her daughter on chemo that night!

One dose of chemo! OH NO!!!

See, the other stuff, I don’t think it will actually affect anyone. Yeah, parents whose children were diagnosed with Wilms this week might have Aunt Edna calling up to offer her kidney, but no biggie there.

But deciding to let your child receive chemo is hard enough. They’re gonna lose their hair, feel sick, get skinny. But it’s worth it. Because most of the time, it will save their life.

We called chemo “liquid diamonds.” I loved chemo. Every drop was getting my kid closer to being healthy again.

And it’s not just for getting rid of the cancer you know about. Here’s irony: when my daughter got the harshest chemo, she might not have had a cancer cell in her. See, she had a recurrence, picked up on a routine scan. They went in for the biopsy, took out all the cancer they saw (very small), and sent it off to the lab. It came back: Wilms.

Perhaps it was all gone. But the chance was also there that cells had spilled during surgery (one of the “spots” was like a liquid filled blister). Or that there might be other microscopic cells somewhere else.

So, we embarked on chemo. That wasn’t a risk we were willing to “wait and see” about.

It was a difficult decision. Having the idea in my head that chemo is the worst possible thing for your child, that you would be panicky, shrieking, at the idea of your child getting one dose, wouldn’t have helped.

We don’t know what the future will bring. But today…my kid is alive.

What are your thoughts? Unlike General Hospital, we could probably extend this into a multi-post arc.

Thursday, March 17, 2011

When Can I Get a Tattoo? The Peculiar Everydayness of Cancer

Dumbledore is back with more wisdom. And visions of ink.


It’s not Little Warrior that wants a tattoo. It's me, the mama.

I have somehow managed to make it 41 years without a single tat. I’ll be (finally) graduating from seminary in December. I want a tattoo!

(What, you think ministers are immune to the subtle temptation of ink?)

A bunch of my friends all went and got tattoos about three years ago. I wanted to wait til I graduated. A couple of months later, Little Warrior was diagnosed with a relapse. She wound up needing several infusions, but none of my friends could donate blood, because of the tattoos.

Now, it’s not the worry of needing to donate blood that holds me back. A) There was plenty of blood in the blood bank and B) They don’t let parents directly donate blood anyway.

Why? Well, that brings me to what’s holding me back on when I’m going to get a tattoo.

They don’t want parents of cancer kids doing direct donations because god-forbid, they may need to donate bone marrow or a kidney to their kid somewhere down the line. Apparently there’s a small but real risk that if they get your blood, their body might make antibodies, which would then attack the bone marrow or organ.

So, a seemingly simple decision – Do Ya Wanna Get a Tattoo? – is complicated by … You Want a Tattoo? But What If Something Awful Happens and You Need to Donate Sumpin’ to Yo’ Baby Within the Next Year?

Summarized as:

“Are you feeling lucky, punk?”

It’s not big. It’s not dramatic. We’re 2 years + past ending treatment. Life gets back to normal and silly things like tattoos become something you think about again.

It’s just an example of how cancer becomes this very mundane everyday thing affecting all aspects of our lives.

Wednesday, March 16, 2011

It's Not All About You.

I remember it like it was yesterday. Husband, myself and our parents were sitting outside of surgery while my daughter was having her Wilms tumor removed. My mom said something so simple to me that sparked my response, I still think about today when I see others struggling with that very question.

Mom - "Why did this happen to you? I just don't understand."
Me - "I'm not sure, but I haven't even thought about the reason yet. Maybe her resected tumor will be a link in research to the cure. Maybe her brother will grow up hating cancer or seeing children sick, and become a great scientist or wonderful oncologist. Maybe I will meet another cancer parent and create something to help millions and go down in history. I'm not sure why, but I feel it's not about me."

Sure, you can beat yourself up over what you did to cause this cancer in your child, but let's face some facts. The causes of childhood cancers are largely unknown. There are some genetic abnormalities or syndromes and radiation exposures that make up a very small percentage of known causes. Possible risk factors are suspected, but scientist have yet to identify specific environmental factors because of the variables associated with lifestyles and coordinates and such. We need more research. Awareness, research and money.

Through funding, be it on a government or private level, compassionate people gather, money is raised, families are involved and ideas are hatched. And these little ideas to create a foundation to raise money for research or grant wishes for children diagnosed with a life threatening disease or even give families a place to call home while their child is being treated at the local hospital become the world around us.

Heroes. They are everywhere, wearing street clothes and loving the world. They make the world a better place. They fill my heart with love and peace and I understand what compels them to do these great things. I get it. I would do anything to ease another's journey.

This post was inspired by Kim Hill, and the birth of the Ronald McDonald Houses. This is not the first or only league of amazing humans, nor will this be the last time we talk about inspiring folks that walk, ride, bake or raise the benevolence bar, but it was sparked by Kim Hill's recent passing.

In her death, we are reminded again, that the childhood cancer douchelord must be overthrown.

Reading an article about Kim Hill's death, I came across a statement Kim made in 1982 that sums up my sentiments:

"I didn't enjoy being sick, but if I wasn't sick, all of this might not have happened." 
                                                                                                                              -Kim Hill

Maybe you are looking for your "why" behind your journey. Maybe you'll find it, maybe you won't. Remind yourself to take it one day at a time. Hug the people you love. Just get busy living. Raise awareness. Collect money for the cure. Volunteer. Love more. Use the force and change the world.