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.


Tube or drink buddy?  
Tube in the nose or drink it Josh, one way or another it has to get in your tummy.
Do you just want to do the nose tube (we ended up with it after two sips in december)?  
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.  
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.