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.

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.

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.

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.