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.

The Big Worry

Elizabeth's son is a 14-year-old battling advanced Melanoma. You can follow his story here.

TUESDAY, JANUARY 11, 2011 6:08 AM, EST

As parents, we worry. The minute they are born, we begin. We worry about the little things and we worry about the bigger things. Some of us are more "experienced" worriers than others - I fall into that category. I have always worried about each and every little thing when it comes to the physical and emotional well-being of our three kids. I'm not saying that makes me a better or more caring parent; I just approach it from this mentally-unbalanced manner. ;) I know I go overboard and for the most part, I keep this worry boxed up inside. After all, I don't want to give a signal to them that they should also be worried about whatever new pursuit and activity they are trying. And for the most part, I think I am successful at keeping my continuous stream of worry a secret (except from my husband). Go conquer the world, children - but please remember to be careful! Ha, ha ....

Yesterday, my worry was in fine form. I didn't sleep at all and after tossing and turning, I decided to get up at 3:30am. I read a while and then got some paperwork done, washed some dishes, etc. Fun times. Josiah's injection lesson later in the afternoon had my stomach in a knot and while he appeared calm and unconcerned, I was a mess. I muddled through the day, appreciating that people didn't give me strange looks when they surely noticed I hadn't even combed my hair that day.

As with many of my worries, this one was unfounded, or unnecessary - but what fun would that be?! Josiah calmly and astutely watched the nurse instruct how to mix the vials. She administered the first shot and suggested she could do the second, waiting to give him a try when she returns on Wednesday. But no, Josiah had his game on and he was ready. So, with no fanfare or hesitation, he administered the second shot into his leg. Piece of cake. As the nurse asked me if I was OK (did I look like I was going to pass out?!), Josiah proceeded to change into his exercise gear and told us he was going for a run. The nurse was floored, I was worried (of course) and I asked if it was OK if he exercise so soon after receiving the meds. She called her office and after some discussion, they cleared him to go. So he went.

So the nurse packs up her gear, continuing to sing Josiah's praises at his amazing learning ability. She stated that an instructional DVD could be made using him, he was so good with the needles. So much of my worries had lifted and I felt euphoric.

That was, until I noticed it was getting dark. When was he getting back? Was he doing OK? Would a car hit him? Was he lying in a snowback, too tired to get home? Yes, I can't let a good opportunity to worry pass me by. So I got in the car and went to do a drive-by. Luckily I spotted him almost immediately and although I couldn't stop because of a car close behind me, I was able to roll down my window and yell, "Are you doing alright?" to which I got the eye-roll and the hand signal to - move on! - and stop embarrassing me! (not sure what to call that hand signal, but it's not the bad one! Just the "shoo, get outta here" one.)

I returned home, once again almost worry-free (he still had to get by a few more cars, after all) and started to make dinner. Arriving home minutes later, Josiah was none too pleased that I trailed him. "Mom, you don't need to come find me. I'm f-i-n-e!"

Oh sweet boy, just wait until you are a parent. While I hope you don't worry to the extent that I do, you will then understand. Until then, I am the nut with the uncombed hair, stalking my kids. And that's the way it is.

Elizabeth Henderson

Newsflash, pediatric cancer parenting, it's stressful

Okay, I'll admit, the magazine I'm going to quote from is dated April 2010, and I am just now looking at it.  One of my few regular splurges that I truly enjoy is my one magazine subscription, to Whole Living (formerly known as Body + Soul Magazine).  During all those tough months I spent being behind and trying to stay on top of things, I neatly tucked each issue I received into the magazine basket.  The magazine basket became the magazine mountain and so I went through and just started recycling everything, old issues from everything, gone.  I kept all the issues of this magazine, because it's mine.

I've been going through a journey I find difficult to share with normals, those sweet wonderful people who still live on the outside of pediatric cancer land, and who frequently acquire a day pass from me to come see what I can manage to share.  Most of them don't and will never understand where I am at right now, where I have been since May 12, 2010, when my son received his last chemotherapy treatment.  But in these past 9 months I've started to realize it goes back a lot further than that, it starts in the weeks before August 19, 2008, when Josh was diagnosed with Wilms Tumor, 3 days shy of 20 months old.

The weeks when I knew something was wrong, and I couldn't shake the feeling that time was running out to find it.  That's when it all started to unravel, I was so, well stressed doesn't cover it, and misunderstandings with family and friends were rampant.  Part of me told myself that was the worst of it, all that stuff I went through trying to find out what was broken inside my child.  As we moved on to treatment I told myself it was all about getting him better from then on and out, the worst was behind us.

How a parent deals with their child's diagnosis and treatment and the life that follows for them, and hopefully their child, is dependent on so many things.  Personality, faith, support networks, occupation, family history, number of children. . .whether or not they like punk rock.  It's as personal and unique as their child's medical history.  The hard part, cancer mom, and you too cancer dad, is it's your journey, and only you can walk it, and you have to do it your own way.  What works for the mom in Room 7 or in the next infusion chair, it may not work for you.

Personally, I never cried about Josh's primary diagnosis.  I teared up after having to tell other people and hear them shatter.  I'll admit I hung up on people when they started weeping uncontrollably, I was fine, but hearing them all be unfine about this really unfine diagnosis, they were ruining my mellow.  I calmly informed my husband that while he was home getting things for Josh that they had come with the papers, that they had informed me it was also in his lungs, I had to speak the word metastasized and watch it register on his face.  I actually held completely strong until our parish priest picked up, I had recently converted, he knew us all by name, and I just couldn't tell one more person who cared about my son, especially the one I knew was going to drop everything and come downtown at one in the morning to see my son and offer a blessing before his surgery, the one scheduled at o' dark holy hell as soon as we can get you scrubbed and on a table first thing in the morning.

I found that tumor days before, and I knew.  I had already allowed myself to contemplate the different paths that may lay ahead of us.  I knew from the ultrasound, but I held a very tiny measure of hope that I was wrong.  They told us to come back later that day for a CT of that "mass," and I knew in my core where this was going, but I smiled and told people over the phone "who knows?"

Holding his sedated little body after the scan, I knew.  The staff, they all knew, and I could tell they knew.  They took us to a different recovery area, I knew, we weren't leaving that night.  They finally told us and my one resounding thought was "What's the plan?"  I wasn't broken, I didn't want to scream, I wasn't overwhelmed, I just calmly wanted to know the plan.  Plans are good, plans are useful, plans imbue purpose.  Show me the roadmap, show me where to sign, tell me what you want to do.  Tell me we have a plan, and it's all good.  I was especially supportive of any plan that involved getting that life sucking mass out of my son asap.  I welcomed surgery, it had been one of my plans.

And that's what I did for the entirety of Josh's treatment, the relapse, and more treatment.  I followed the plan.  I looked down the road, spotted hazards, made contingency plans, brought up everything I could think of with his team.  I made sure the people with the plan, had more plans waiting, that we all had a plan to have plans about plans.

I'm the kind of person who pulls aside the NP and asks "So if, well, I just need to know, if anything ever went really wrong, and I found him dead one morning, unexpectedly. . .well do I have to call an ambulance?  I think that would freak out his sister and really mess her up, could I drive him in and bring him to the ER?"  Yeah, I even made that kind of plan.  You have to know this NP, she knew about me and my plans--and that the contingency plans, and the emergency contingency plans are how I coped.  We walked through several plans, I said thank you.  I had plan, it was all good, that scenario couldn't catch me off guard, I could divert to auto-pilot, I had a plan.

I was always this way and it took a Zen Meditation class to get me to realize, you can't not think about something by trying to stop thinking about it.  The way I can let go of some thing is to acknowledge the idea, let it take the floor, have its say and then tell it, yes, and here's my plan, now please be quiet.  Then I can be calm and silly and whatever else I need to be, me and nagging feelings don't co-habitate.  I'm a "don't identify the problem unless you are willing to be part of the solution" kind of gal.

For all my plans, I didn't have a plan for post-treatment.

I floundered, like a little goldfish moved from a little bedside bowl into a giant aquarium.  Of course I wanted back out into the world, but my mojo was off.  I was used to swimming my little pattern in my little bowl, following the appointment metronome/current.  There was a lot of water out there.  Enough water to feel lost.  Enough water and other normal fish to finally force me to look back and realize that while I was coping and making my plans, that I hadn't avoided something stressful, I had just worked through it, not around it.

What I went through was stressful, I could acknowledge that without negating how hard I had worked at it.

This brings me to my year old magazine and an article entitled "Stop Stressing, Start Living!"  I knew I was going to have to read this article and not skim it when I hit this at the end of the first paragraph ". . . And yet, unlike PTSD sufferers, they hadn't been through any terrifying ordeal.  In fact, they denied feeling overly stressed at all."  I mean we all talk about co-opting PTSD to mean Post Treatment Stress Disorder, but here this researcher was going and say it's real, you can rock something, work through something, think you handle it, and yet still be altered by it.

Two paragraphs later, I snickered, ". . .now we're barraged all day long with demands and decisions.  Lee calls this intense and unabating force 'super-stress.' "  Wow, if they are just talking about a 9-5, then can we cancer parents call what we go through super-super-stress, or perhaps summa-super-stress, gigando-stress?  I dunno, but crushing demands and decisions, yeah, been there, done that.

They do go on to supply a checklist of five things for handling stressors:
1- See stress as a warning bell.
2- Focus on the solution.
3- Know when to say "enough."
4- Have a few cherished rituals in place.
5- Keep family close.

Whether you are out there freshly diagnosed, in the middle of treatment, post-treatment, or cherishing the memory of your beloved--well it's time we all fully read the headline "Pediatric Cancer Parenting is Stressful." Find your rhythm, find your mojo, find your way to keep your rudder under you and find balance, but for the love of yourself don't convince yourself this isn't stressful.

What you are doing matters.  Staying present and centered to make the decisions that have to be made is vital.  But cut yourself some slack.  This IS hard.

When you feel the stress getting to you, don't shove it away just to stay focused.  Listen to the stress, let it be your personal IV pump alarm bell.  The bag is empty or there's a bubble in the line and you can't ignore that.  Get some lunch, call a friend. . .just walk away for a little while.

When all of this reality, this life and death gets to you, focus on the simple solutions.  A balloon, a toy, a massage, a favorite show.  You can't fix cancer, you can't stop the treatment from being awful, but you can sit on the floor with a over-sized bag of dum-dums and sort out all the red ones.  Focus on the problems you can solve.

Every good superhero has a sidekick, and we all need somebody who we know has our back.  Know when you are being pushed to your limit, ask for help before you get there.  Ask a nurse or volunteer or friend to sit with your child and walk away, go find some fresh air or something that will refresh you.  Know when to kick visitors out, stand up for yourself and your child.  Know when to pick up the phone and make a call, and when it's best to just let calls go to voicemail.

Find something, that without fail you can practice to acknowledge how stressful this life is and help you find your way through.  Be it religion, exercise, creative arts, music, or computer games.  Something that you do that brings you back to something you love and to a place where you are caring for you so that you can have energy left to care for them.  We had rituals for in-patient, rituals for out-patient, rituals for our family, and I had rituals just for me.  It doesn't have to be spiritual, it can be driving to the grocery store and walking every aisle to just get a gallon of milk.  If you can look forward to it, if it can be a salve to your heart, cherish it, practice it.

Remember your family is in this too.  Try not to be so busy making the tough choices and shouldering all the stress that you leave nothing else for your family to pick up and help you carry.  Give siblings a job like packing a distraction bag and/or snacks for their sibling.  Allow your spouse to have their role, their part in it all.  Don't let the stress of managing it all drive you all apart and compartmentalize your family.

There is no handbook, no normal to this road.  It is stressful, no matter how awesome you are.
You are allowed to have a bad day.
You are allowed to be furious.
You are allowed to thrive.
You are allowed to falter.
You are allowed to make mistakes.
You are allowed to let others pick up your slack.
You are allowed to crack a little.
You are allowed to not heal up immediately.

You are allowed to take care of yourself.


Most importantly-

You can do this.
You are doing this.

Dr. Jekyll and Mommy Hyde

Confessions from some Real Moms of Baldkid County


Mom X:


So, the thing is...

I do feel bad for you most days when your kid is home with a cold.

I do feel bad for you most days when your ice maker quits working.

I do feel bad for you most days when you had to wait twenty minutes past your appointment time at the pediatrician.

But, you wanna know a secret?

No matter how many times I tell you that it's okay to complain in front of me about anything, there are sometimes when it's not. And I can't tell you when or why because I don't know when or why myself. Just some days, I don't think it's the end of the world that your kid has an ear infection.

I don't like this about myself. I don't want to make the rest of the world's problems pale in comparison to cancer and it's aftermath. And 95% of the time, I do a good job at it.

But that other 5% sneaks up on me when I least expect it. And not just to others, but to my own kids. My 5-year-old currently has pneumonia and MRSA, both of which are potentially life-threatening to a child on treatment. And I can't seem to feel like it's that big of a deal. I mean, she has plenty of white blood cells.

So, even though most days I do sympathize when your DVD player in the van quits working, there will be a day or two in there that I am plastering on a sympathetic face so thick that I feel like it's going to crack at any second as I'm thinking, "WOW, could your life get any worse?" I will be thinking, "I hope your pediatrician wasn't running behind because he was giving the news to another parent that their child has cancer or [insert major life-changing diagnosis here]."

I'll be thinking it, but I swear I won't say anything. I can't even imagine what someone who has lost their child is thinking about this very moment. But I'm sure not going to complain that my cancer survivor is trashing my house in front of them.

Don't be the skinny girl who complains about how she needs to lose weight in front of her chubby friends.






Mom Y




You are my friend/neighbor/acquaintance, and I need you to know something. There's a difference between having a crummy day, and having a crummy day and acting like it is the worse thing ever.


Talk about it all you want, call me, post it on facebook.  It's your life and I'm still your friend who cares.  But remember, please, who I am.  I am the mother of a pediatric cancer patient/survivor/angel and I am human.  I am not awesome everyday, I cannot always hold back the bile about what my child has suffered and that it is going to keep happening, every day, to more families.  Most of the time I can deal with it admirably, that's who I want to be, it's a choice.


But.


Well there are those days, when what my child has gone through, what his/her friends have gone through makes me really really angry.  On those days, if you want to say "My dad totally said I was a bad mother for how much tv the kids watch, it was awful.  Can anything worse happen to a parent?" you better prepared for an answer.  Because somehow you know me, and because you know me you know it can be worse, because you can be told your child is dying unless you cut them apart and poison them and pray it works.  


I hope I'll be tactful, because I am not saying what your father said isn't hard, and didn't hurt.  Just, stop yourself at "it was awful" and don't ask that question.  Because the next time you do I might do more than remind you about pediatric cancer, I might print you out pictures of children I knew who are dead, children who are suffering, I might lift my child's shirt and ask you to take a long look at worse.  


And then when I'm done with pediatric cancer, I may tell you what else I've earned in the trenches, that I know the answer to "can anything worse happen to me as a parent?"  The answer is always yes.   It is out there, I've seen it.  Diseases that make pediatric cancer look like a day trip to a pediatrician's office for a snuffly nose. 


There is worse than having to wait 4 weeks for an appointment, it's being told you can't leave the hospital, that your child might die if they don't intervene immediately, as in 14 hrs from telling you that you have to stay.


There is worse than a busy waiting room teaming with sick kids, it's a private hospital room on a unit where every kid there has a good chance of not seeing their next birthday, a unit that comes with a room just for children to die in.


There is worse than not being able to get out the house for a few days because of the flu, it's living in a sterile, confined, rule-laden bone marrow transplant room for 6 months when you were only supposed to be there for two.


There is worse than your child growing up and back sassing you for the hundredth time, it's watching your child slowly regress through every milestone to a tiny helpless being who can barely lift an arm let alone put it to their hip, it's watching that tortured little body draw their last breath in your arms.  


I am all too intimate with these realities, I can't block them from my head, and some days the knowledge itself crushes me.  I don't want you to have to live with them, I wouldn't wish that on you.  But I do ask you to remember they exist, to check yourself, to remember gratitude.






Mom Z




And when you say things to me without following through with the thought first, I will forgive you, but I need you to know what really happens inside my head. And it's not like I walk around all sparky, there are trigger factors. And those factors could be a future post.
 

What's that you just said?  "I don't know how you do it, you must be such a strong person" Ummmm, yeh. I got no choice but do it, remember? My child didn't go down to the oncology clinic and sign up for the war, it was a draft. And the whole family was sucked in. No, I am not a strong person for watching my children go though hell, because the diagnosed child is not the only child that suffers, I am crushed when I hear a whimper or a cry and it brings me back to a memory of that child being poked or held down or just feeling crummy. No, I am not stronger for having my eyes forced to watch so many children suffer from disease in clinics and by meeting other parents of children battling something, fighting for another day on this earth with their family, no matter what they go through every day. No, I am not a stronger person for living among the fear that the Omnipotus is lurking, waiting to attach it's prongs into my child again.

 "Let me just say, you must be a better person for going though that"  And let me say that the further you get away from the chemo, the more frightening it is to not feel that warm comfortable blanket, "walk away from the light CarolAnn, it lies".  No, I didn't get through it, it isn't over yet. I am a mother that has a valid reason to fear for one of her children to be taken under deaths wing, again. If cutting your child in half, taking out a major rotten organ and giving you a schedule for months of weekly poisoning, giving you a very large binder explaining crazy-scary side effects of the chemotherapy drugs and tests to be preformed on your child until they reach young adulthood, and the promise that you will reach your max out of pocket for the first few years is making it through to the end, than I'm ready for the punch line. So please,  if you know me, and I say something to make one of your eyebrows raise, give me a break. Ask me if I'm alright. Make a joke. Or better yet, if I have offended you that bad, try to ask yourself if scan week is near, because that, I notice is a big stress trigger. Want to know another trigger? Me too, but they are invisible. They are like those little no-see-ums that make you wave your hands around your head like a crazy person until you just snap at what seems like the thin air.

And if I hear one more "I see the effects this is having on you" and then you turn your back on me, I'm going to start taking away some of your points.

"I knew you were different when I found out you were a cancer mom" Oh yeh? And how do you mean, different? You mean like the soldiers that return home and start to resume their daily activities and/or job and nothing feels quite right. You still drive the same car, go to the same restaurants, visit the same friends, but it all seems skewed. Things look, feel and are so different now, like you are living in a parallel universe. You have been altered against your will.

One of us editor moms emailed the others this post idea to ask what we thought.  Sometimes we do that, run things by each other, sometimes we just sort of mentally purge into a post and put it up without asking for feedback.

We all agreed this post needed to be out there.  We thought it was an important post to go along with the concept of "paper cuts still hurt" - the idea that my kid having cancer does not negate anything crummy happening in your life.  But well.  Our perspective is still different, tolerant, but different.  As our support network, we want you to know that, we care, but we would also really really love for you all to be able to realize how lucky we all are, you know without you having to have a bald kid of your own.  

The last day of 2010

2010.  You've been a hard, hard year.

There are people in the world suffering under political regimes I cannot grasp, homeless, destitute, in slavery, in the depths of the human condition, starving for things I take for granted like food, shelter, warmth, love, kindness.  I acknowledge that, I know I have a life of advantage and have and will receive a bounty of blessings.

I can recognize that and still call you hard 2010, because this year, this year I was witness to suffering that should not happen, suffering that has set up camp in my heart and refuses to leave, suffering that is not my own.

For too many families 2010 is a year that will be seared not only into their memories, but into their souls.  It is the year their child died from cancer.  I know two of these moms, personally.  They aren't some caring page I follow from afar, they are women I know.  Women I've hugged.  Women whose children's voices I can still remember, whose smiles linger in my memory and refuse to diminish.  I can see them like it was yesterday, because in 2010 I did.  

In 2010 I stood in quiet attendance as their coffins were buried.  It's been 4 months since August, since their battles ended and they found relief from their tremendous physical suffering.  Tomorrow will mark month five for one of those families.  That date is what brings me here.

I sat thinking before chirstmas, that in so many ways I am ready to leave 2010 and it's hardships behind, to move on to a fresh new year.  I am sure many of you have the same feelings, or at the least are excited to start a new year and see what surprises it holds.  Are those two women?  Because I can't shake this one simple thought in my brain.

January 1, 2011 will be the first day of a calendar year they live without their child.

As awful and horrendous as 2010 has been to them, this day December 31, 2010, they can still say, "this year, 2010, I held my child.  I hugged and kissed my child and told my child they were loved beyond measure.  This year 2010, my family was whole.  In 2010 my child was here."  A simple tick of the clock, a ball dropping in a busy city, it takes that away from them.  From here on out they live in years without their child.  Years where their child is memory.  Their child will have been here last year.

I think of them both and wonder if their hearts want to linger here in 2010.  If December 31st could last a few weeks or months until they are ready to face what happens at midnight.  It's not just another day, it's a new beginning and one that is mixed with longing to linger here and hope for healing there.

A part of me wants to stay in 2010, because on December 31, 2010 all 400 of the kids who will be diagnosed with my son's cancer have heard their diagnosis.  In those brief waning hours of new years eve, no more children will be diagnosed with his cancer this year.  I want to stay here in this moment, where membership is temporarily closed to new members.  With 2011 the counter resets and 400 more families will join the ranks of the Wilms Warriors.

In 2011, over 13,000 more children will be diagnosed with cancer in the United States.  In 2011, almost every day of it, 47 children under the age of 15 will be diagnosed with cancer.  Some of those days it will be less than 47, but too many days it will be more.  1,400 of those newly diagnosed children will die within this year.  Countless little warriors who have already been fighting the arduous fight for years already will die this year.  All of those families will find themselves in this place with my friends come December 31, 2011.  Facing the dawn of a new year in which their child will not live.

All of this will pass and my wanting to stay here in 2010 won't stop that from happening.

Tomorrow will be about hope, it has to be, it will be.

But for today, in these final hours of 2010 I want to hold on to the year 2010, because in 2010, Skye and Sam lived.

Numbers

Myself and fellow editor Christy attended the 1st Annual Wilms Tumor Symposium, hosted by the Pablove Foundation last weekend.  I wish every pediatric cancer had this kind of meeting.  We as parents got to attend a medical conference with the medical professionals that chair the National Wilms Tumor Study Group.  As in the doctors whose names we have seen and heard since diagnosis. 

This crew included the one woman from Chicago responsible for reviewing the pathology reports and samples of every Wilms diagnosis in the United States.  Many families owe her a great deal.  Also in attendance the doctor who is the head of the group, the one whom often is the final vote in what treatment plan a child should be placed on.  To meet these people was a little intimidating, but exceedingly gratifying.  We heard from radiation oncology and about long term side effects.  We also heard from palliative and hospice care, they covered the whole spectrum of interactions and this disease.

What I want to share with you all came from a brief conversation with the man who reviews relapses and is compiling data on how, what, and where.  Relapse is important to me.  My son is a relapse data point on his charts.  I got to ask him things I needed to hear about how my son's cancer originally metastasized, and ask the hard questions about if it would have relapsed if we had followed a different protocol. 

At the end I asked him to confirm my son's event free survival rate.  I needed to hear that number again, to know my own team hadn't been softening the blow as they often do for parents.  he confirmed a range it was in, but no one could really know.  Then we had a conversation that I think eveyrone should have a chance to think about.

He told me, every child's survival rate is really 50/50, which sounds sobering, but in actuality they are either going to make it or they are not. One or the other.  All too often we get so caught up in, worried about which is more likely, but we can't know the actual statistic for our child.  each child is unique, their outcome unique.  Even if you tell a family the survival rate is 98%, somebody is that 2%, someone doesn't make it.  If you tell a family 25%, well, some do make it.  Survival rates are just a number, a statistic.  Good or bad, they do not decide if your child is going to survive this battle.


There is no survival magic eight ball.  Although he asked me to get one for him as well if I ever found one.


This conversation has marinated in me for some time.  It reminded me of a family who had been told their child was terminal, that the road was coming to an end.  They refused to ask or be told an estimate of how long their child had left.  They didn't want to be disappointed and feel robbed if the child didn't make it to the length they had been told, or feel they had rushed and crammed too much in when there was more time left to share. 

They just wanted to enjoy each day as a gift, with no expectation of how many more were to come.


Today I am thankful for today.  This gift of my son, of both of my children, of my family.  My son may live to pester me for car keys or he may not, but I have today, and no number can change that.

A Case of the Mondays

Just let me look that up for you, mommy.

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

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

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

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

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

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

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

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

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

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

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

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

Lemon Drops

This post is inspired by other cancer moms, friends, family . . . people who have said to me, "I just don't know how you do it."  People who have said it like I have some secret handbook to life.  People who talk of me like I am somehow stronger than they are, like I am doing something they couldn't.  I want them to know, there is no secret.  I am just as human and flawed as they are, that we all struggle.  We are all at different vantage points along our journey.



I don't have a picture, but I can remember so much about that moment. 

The moment right as our plane took off from Los Angeles last summer, July 2009.  A few weeks earlier Josh had gotten his port out, we had all the time in the world to go on that much deserved beach vacation.  Until we didn't.  His port was removed June 9th, the afternoon of June 22nd Josh was upstairs sleeping off his CT sedation when they called to say he had already relapsed, only 3 months out from the last time we flooded his body with chemo.  In the 6 weeks from when that chemo would have seeped out of his body, one of the tumors in his lung had regrown to its original size. 

We had only one request.  Can we please go on vacation first, we promised Penny.  Our therapist and our primary oncologist advocated for us, three days later we got word they would delay, but only one week.  We were on a plane to stay with former co-workers living in sunny, beachy orange county 3 days after that.  We stayed for almost a week, my kids broke things and taught them about the child-proofing to come, we drank fresh microbrews, and ate awesome thai food.  There were beaches and sand and horses.  Josh appeared perfectly healthy.  Except he wasn't.  We came home late on a sunday, he was in surgery tuesday morning.  Cancer doesn't wait while you pull yourself together.

I remember that flight.  Some passengers had traded us seats so our two little pairs making our family of four could sit only a row apart instead of the whole plane.  I buckled in.  The woman across the aisle asked if she could put her carry-on under the seat next to me that was empty.  I happily agreed and took the bag from her and began squeezing and shoving it roughly under the seat.  She winced.  It was not working, and then I used two hands.  Grasping it from both sides I recognized the item, the bag contained an urn, wrapped in a blanket. 

I pushed more gentle, bent over in a knot, but I slowly secured it.  A quiet tear fell from her face and I smiled as reassuringly as I could, and turned away so she could weep quietly.  The plane taxied.  In my head a ukulele played, the lyrics of  "Somewhere Over the Rainbow" did their best to assemble.  I can't even remember if I was seated next to Penny or Josh, I think it was Penny.  But I remember the way the light streamed in the windows on our side of the plane.  I remember the hot sensation of my own tears starting to stream.

I wanted to be anywhere but on that plane.  Every protective mothering instinct told me to run.  Instead we boarded.  Delivering my son back to surgery, radiation, and more, harsher chemo.  Delivering my daughter to more fear and more uncertainty, more having to be the super sib.  Delivering my husband back to a life where we managed, we scheduled, and lived lives in parallel keeping it all afloat.  I struggled to sing the lyrics.  To remind myself there would be a somewhere, a place where this would end.  Relapsing is cruel.  Relapsing immediately. . .at that moment was too much to bear.  I just wanted this plane to get diverted to anywhere but our city.

And then the woman diagonally infront of me next to the window began to sob, softly.  I could see her shoulders heaving.  And briefly I thought "I'm sorry I didn't realize I moved to the crying section of the plane."  I remember the external sound of my own laughter snapping me back to reality.  Plane trips like movie scenes are supposed to be happy, full of excitement and waves and kisses goodbye, happy memories and anticipated adventures.  Except when they aren't. 

So I reached in my carry on and pulled out the travel pack of tissues.  I triaged.  How many tissues did each of the three of us need?  I decided I could get by with one.  I was a mom traveling with young children, if need be I could use my sleeve and blame it on the kids.  The lady with the tired eyes desperately needing to not cry anymore but failing, she got 3.  The rest of the pack I'd give to the lady infront of me.  I wiped my tears.  Gave myself a peptalk to pull myself together and took a very large, slow breath. 

I reached across the aisle and took her hand, sliding the tissues into her palm.  She looked up at me from her concentrated gaze at her hands, the gaze where she had been fighting with the stinging tears to stop.  Her face was anguish.  She wanted support, she wanted help, but she wanted to crawl in a hole away from people, away from the pain, away from the lady across the aisle whom she was ashamed to be crying in front of.  I knew there was nothing I could say to make it better and she didn't need to talk, so I simply said, "One breath at a time."

She nodded, and I turned away before she had to say something.  She didn't need to.  I didn't want to have to tell her why I was sad.  I couldn't bear her pain anymore than she could bear mine.  I took another breath.  The lady in the row ahead was getting worse.  The man next to her was awkwardly trying to talk to her.  Big breath.  I shoved my hand between the seats.  I rested my hand silently on her shoulder.  She put her hand over it, she cried harder.  I struggled to find something to say.  "Not every flight is a happy one, it's ok."  One thing I have learned, sometimes you need to give yourself permission to just marinate in the suckitude of your situation.  She sobbed and shook her head up and down in agreement.  I pushed the package of tissues through to her hand.  She squeezed my hand again and then took them.  She calmed and then the sweet man next to her told her a joke.  She snorted.  We all giggled.

I went back to ukuleles and troubles that could melt like lemon drops.   The tears crept up and spilled slowly.  I didn't want to be on this plane.  But neither did ashes lady, or the lady who just said goodbye to relatives she was afraid she'd never see again.  We all have to do it though.  We have to get on the plane, even when it is not a happy flight.  I tried to find gratitude that Josh still had a chance, that we had excellent medical care.  But I couldn't do it that moment, I just wanted to be somewhere with real ukuleles, warm salty breezes, endless sand, drinks with umbrellas, and carefree days that had the promise to last forever.

We put our shoulder to the grindstone and slogged through one of the toughest and painfully beautiful years of my life.  

I didn't hear that song in any form, didn't even think of it, until 13 months later.  I was seated in a church next to my husband.  I was wearing the paisley dress we bought in amsterdam, the one Penny loves, the one with handsewn accent beads that fall off everytime I wear it.  The church was filled with pastel pink and purple balloons.  Balloons tied to little stuffed animals.

I had just taken my seat.  I had just returned from a volunteer mission.  I had stepped forward, and volunteered to go tell a mother it was time to close the casket on her daughter's coffin.  That it was time for her to look on her daughter's body, devastated by the same cancer my son has, a cancer that was diagnosed at the most favorable stage, and then had relapsed over and over.  It had ravaged her, until, finally she couldn't fight it anymore, till she asked to go to the hospital for hospice, where she died, slowly.  I couldn't even look at her.  I didn't want to remember her like that.  I had focused on her mom, I had refused to look at her body.  I don't even know what color clothes she had on, if it was a dress or a shirt. 

I had just used my phone to email the other editors of this blog, asking them to promise me that I would never do this again with their daughters at the back of a church in a little white coffin.  I had choked on the burning in my throat, the reality that they could hope, but not promise.  I had gone to find our friend.  To give her one last hug before the service, one from all three of us, her pack.  She wasn't at the back of the church and the funeral directors and some family were discussing that someone needed to go tell her it was time.  It is a tight knit little town.  They all were aching.  I volunteered.  I found her.  I said it in way I think only another cancer mom could say.  I gave her the longest hug I could muster, and I walked away so she could gather herself.

I sat next to my husband.  I bit my cheek, the way I do when I really don't want to cry.  Parents took a seat for their own child's funeral, as helium balloons swayed and bobbed against each other.  And then that little ukulele began strumming.  I stopped biting my cheek.  We both cried.  My husband and I.

I didn't want to be here either.

I didn't want to bury this little girl.  I didn't want to make peace with the idea of it.  I didn't want to swallow the truth that it could be us, that we didn't have a golden ticket that would absolutely spare us.  That the harsh reality was, that if it wasn't our boy, it would be another child.

I sang that song in my head as my husband and I stood watch over her little casket.  We stayed, alone, under a tree.  We stayed and did what we knew her family could not, we threw the first handfuls of dirt, we stood guard over her body till there was nothing more that could be done.  We tossed pink and purple petals over the dry dirt, because I knew she wouldn't like it all ugly and brown.  In my mind I sang about being high above chimney tops, I wanted this journey to just stop hurting so much. 

I wanted to be somewhere over a rainbow.  I didn't want to be doing this.  It was a hard day, but I got in the car and drove there. There is no magic secret in these aching hours.  Life means doing all of it, even the trips that aren't happy.  Life means looking at a child or a friend, and telling yourself that loving them means you go where you don't want to go, because being beside them through hell is what will make you walk through it at all.

A few weeks later we were still raw, and we were back in CT again.  Portless again.  The line had ruptured and been removed before the scan,.  We waited.  We got the news, Josh, for the first time off of chemo was NED, no evidence of disease.  We didn't celebrate, the only true tangible feeling was relief. There is an ocean of difference between ecstatic and grateful.  I had just been back to that little girl's grave the night before to celebrate the birthday she missed.  It seemed insincere to make a fuss like we had annihilated something that could be absolutely vanquished.  Her grave is a reality.  We had gotten a pardon, a reprieve.  We get to think about the 62% of his survival rate for 3 months instead of the 38% chance he won't make it.  We were, we are, thankful for this time, as long as it lasts.

Weeks later we began to plan our "real" beach vacation.  Penny wanted to go to Hawaii, she wanted to hula.  I tried desperately to sing that song to her.  I ended up having to get it off iTunes instead.  We listened to it before school one morning, and I would swear I heard her mumbling it now and then.  A few more long weeks of stress passed, as they do, crawling and sprinting all at once.  It was time to go to a birthday party.  Life and all of the joyful milestones don't wait for you to pull yourself together either.

It was the 3rd birthday of a boy I homecared until Josh was diagnosed.  We missed his 1st birthday party, it was 5 weeks after Josh's diagnosis and nephrectomy.  My husband and daughter went.  His second birthday, Josh was too ill from the relapse course of chemotherapy.  Penny was struggling.  My husband went by himself.  This year, he was three.  We were all going together.  And one of the attending oncologists would be there, their family took gymborree classes with the birthday boy.  It was twistedly ironic.  Our first of his birthday parties, we'd spend it with the man who saved Josh's intestines from a blockage surgery wouldn't believe existed, the man who trusted my weird feelings.  The man who only weeks ago had re-written an order for an ultrasound to a CT, solely because I lost it on the phone with the nurse and melted into tears. 

This past saturday was warm and gorgeous in my town.  My husband burned a cd for the kids, I'm not sure why.  We piled in the hybrid commuting mobile, and put the windows down.  The cd slid into the player.  The ukulele plucked those first few notes.  Penny squealed.

I looked in the passenger side mirror.  I could see myself, and somehow I looked happy.  Somehow I looked rested.  Somehow, I saw myself for the first time in a long time, and I thought I looked pretty.  I laughed, I was wearing a red shirt, much to Josh's approval.  Over my shoulder I could see my daughter, melting in happiness.  Singing along, loudly enunciating "Lemon Drops" despite the fact that she has no idea what they are, flying her hand out the window like mine.  Making "hummingbird shadows" as she likes to call them.  We took the long way, the way that goes through both round-a-bouts.  The ukulele played on repeat. 

The breeze was as soothing as any ocean breeze.  My family was all together, in our little car.  I reached out the window and chomped my daughter's hand.  She giggled ecstatically.  The sun warmed my skin.  The noise of the other cars was barely audible. 

I cried, slightly.  Softly.

I had made it.  Somewhere after treatment.

It wasn't the somewhere I wanted.  I am here, where people from there criticize a mom for even thinking of photographing their child, for documenting a life that may end too quickly.  The here people happily stop thinking about after one month of awkward acknowledgments and discomfort.  The here where you just have to move through the pain, and the fears.  The here that shows you how tough you are, because it doesn't give you a choice.  The here where you don't have cancer, your child does, you are the mom, and you have to make unspeakable choices.  The here where no matter the outcome, no matter the length of your journey, you come out changed.


The here where a ten minute car ride can cement itself to your soul and define who you are becoming as deeply as a funeral for a child you love like your own.  

My troubles don't melt like lemon drops.  Some days, are still really hard.  I grapple with the fears about whether Josh will ever be able to live without his current limitations, will the long term side effects be treatable, will he relapse, will we fill a church with red and blue balloons?  I mourn 2 little friends I touched and laughed with, I break for their mommas.  I ache for little ones I only know from pictures, little ones already lost, and their brave families.  I try to be on time for kindergarten drop-off.  To remember appointments.  To not triple schedule for the same time slot again.  To clean and fold laundry.  To snuggle and discipline.  To not yell.  To breath.  To take pictures.  To return work to my clients as timely as I can muster.  To sustain productivity for more than 3 days.  To return emails.  To recognize my best is all I have right now.  To cut myself some slack.  To let myself do nothing despite a to-do list a mile long. To wake up smiling.  To steal another kiss.  To ruffle a head full of hair.  To lose my patience and find it.  To brush little teeth and clip little nails.  To visit specialists.  To allow myself to mourn my own losses.  To dance to the "GoodMorning" ringtone/alarm my new phone makes in the darkness before the sun rises. To find the gentleness of now.

It's been 16 months since that plane ride.  I just wanted to get here.  To NED.  But it isn't where I thought I'd find it.  I didn't think I could be this tired, that 2 years could catch up with my so intensely.  I didn't think I'd have to teach myself to find beauty again, to remember what's important.  It's certainly not the deadlines, and the "getting back to normal" everyone so desperately wants me to do so they don't have to think about cancer anymore. 

I refuse to get back to that normal, I just can't get back to there.  I refuse to run around the wheel and live for deadlines and meetings and filling schedules with activities.  I can't repair the cracks in me with one clean scan.  I can't just walk away from here.  I've slowly come to terms with the simple truth that even if I could, I don't want to. 

Here there is gratitude that surpasses normal, that is deeper and stronger than feeling lucky.  Here there are friendships forged in the hottest of fires, and of the strongest of metals.  Souls that understand and accept cruelties others can't bear to imagine, ones that know without having to ask. People that step forward from normal and jump in with me despite never having gotten diagnosed into the club.  I have a built in friendship meter now, the people that can talk about the cancer, and the people that can't. 

I don't have the magic answer.  I still ache in the center of my chest thinking of that plane ride.  Write names on balloons and release them instead of keeping them till they droop to the ground.  I still fly my hand out of the car window and sing to a ukulele as my daughter drifts afloat the purest of happiness. 

It doesn't have to be pediatric cancer that puts you on a hard road.  There are things out there just as bad, and as we like to say, "paper cuts still really hurt."  If you are broken, if you have those fears that immobilize you, here is what you need to hear from my journey.  Listen to the lady across the aisle, "One breath at a time."  Roll loose change, use a whole container of clorox wipes to clean one bathroom, knit, take a walk, sit still.  Pick one thing you can manage, and do it.  That's all you have to do, it's all you can do, just do that one thing, no matter how small.  Then breath.  And then do another.  Put one foot in front of the other, move forward, no matter what the speed.  There's no magic answer.  It's one choice at a time.  You have to go your own way, find a way to integrate it all, to cobble all the pieces together and make yourself feel whole again. 

To allow yourself to be capable of being filled up with those moments of sunshine and warm breezes, no matter how far you are from the ocean you wished they came from.

To allow yourself to co-exist in the pain and fear of your journey's past and the wholeness of your present. 

To allow a song to bring back some of the most painful memories of your life and one of the most beautiful ones as well.  You don't get to pick and choose.  You are the sum of your parts, of your experiences.  You do choose how you assemble them into your present.

My 5.5 year old daughter recently climbed next to her almost 4 year old brother in our over-sized chair.  He was tired and in pain and just sick of not feeling well.  He hasn't had chemo in five months.  This is just life now.  She stroked his hair and said, "Joshie, if you die and I'm still alive, I'll ask mommy to take me to the box where we'll keep your body.  I'll ask her to lift the lid and I'll put your toys inside. Don't worry."   He said, "Thanks, Penny."

I find myself thinking, "I don't know how she does it."  How is she so tough?  The truth is, just like her momma, she's not.  She can't sleep without a picture of her family, all of us, hanging next to her bed.  She just does the best she can.  She just knows that deep in her core, her life is entwined with his, that walking with her brother means going wherever the path may lead.  She'll do it, for him. 

I live with two little superheroes, some days, in comparison, my troubles do seem small enough that they could melt like lemon drops.