Bookcovers and Public Information Acts

Which boy pictured (above and below), just got his last chemotherapy an hour before this photo with a favorite snack?

Which sweet little man is in the hospital because at the time of his photo he was currently battling cancer with chemotherapy?

The answer to both questions, is both of them.  My sweet little man was 19 months old at diagnosis.  He underwent radical abdominal surgery, radiation, and a chemotherapy regime utilizing three chemo agents.  I cut his hair every 4-6 weeks for all 6.5 months he received chemotherapy.  He never lost a single hair. 

You read that correctly, he underwent chemotherapy and did not lose his hair, it didn't even thin out.  Three months later he underwent his first routine post treatment scan and had relapsed.  Again more surgery, more radiation, more chemo.  Another 3 chemo cocktail, this one over the course of a week at a time.  He lost his hair with the first chemo treatment, it started clumping off his head the first day he his blood counts began to trough.  He went from a full head of hair to looking like he had mange, to shiny bald over the course of 5 days.  When he goes bald, he goes bald.  He looked like a skunk for about a month from the tan line left by the celebratory mohawk we had shaved thinking it was all over.  Never judge a book by its cover, or a kid by their presence of hair.
 
Not every kid taking chemotherapy loses their hair.  I even had to explain it to the Flashes of Hope photographer that came to our hospital, no, he is on treatment, yes, he still has hair. Others on protocols, like those for Leukemia, lose their hair and then start regrowing it while still on their maintenance chemotherapy.  Never assume hair=not taking any chemo. Don't feel bad, the general public is not aware of this anomaly either.

During his first protocol which had outpatient chemo, the handful of times he did get admitted to the unit I got the sympathetic looks, I must be a newbie cancer mom.  I got asked how I was handling his recent diagnosis more than once.  On the unit it was at least funny.  "He got diagnosed in August."  Look of disbelief and or embarrassment.  "It's ok, he's a freak.  We like him that way."  His lack of baldness was a great ice breaker in the unit playroom.  In the clinic it was usually more of a question of how young was he at diagnosis, since we were obviously in post-treatment follow-up.  With other oncology moms it was never unsolicited, we were already talking or laughing about our kids.  It's like on tv shows when inmates ask each other in county lock-up, "whatchya in for?" Wilms, 19 months, you?  ALL, 4.5 yrs.  Bummer.  Yeah. 

He was an anomaly and cute, it was fun to not have to experience that assumed part of chemo.  Except when  I was out in public with nosy, or even worse, the paranoid normal people.

During Josh's first course, wow, were there days I wanted to shave him bald.  I know, that sounds horrifying and ridiculous.  Being the mom of a kid on chemo, with a low ANC, with a full normal looking head of hair, in public is a unique treasure.  I can't make this stuff up, it's just that bizarre.  I had to get him some milk, I made a rare trip to the closest grocery store with him, like one of two times I went in there with him in the 2 years he was on treatment.  I took a cart from the outside corral furthest from the store, one that had been outside in the elements, where hopefully those wet loving germs had died.  I doused it in antibacterial wipes and my pocket size lysol (yeah they make pocket size lysol, it's awesome, especially for ER visits, look at your Target in the checkout aisles, that's the only place I've found it.), and wedged on one of those baby shopping cart covers.

This was going to be a surgical strike.  We even had the surgical looking kiddie mask to prove it. 

In, to the milk, to the self checkout, and out. 

Five feet in the door, I paused to put my keys in my pocket.  A random stranger sasses loudly to her fellow shopper, "If that baby is so sick she has to put a mask on him so he won't infect us, why is she in this store?  I mean what a ."  I debated saying nothing, this was a surgical strike, she was slowing me down.  But, well, that's not how I roll.  Nicely, but very calm and matter-of-fact I replied, "He has kidney cancer, he's taking chemotherapy and he still has hair.  The mask is to protect him from people, not the other way around."

I didn't wait for a response, just kept pushing my beautiful toe-headed little boy.  I wanted to get all sassy back, flash them some kiddie cancer scars and his port, but they weren't worth it.  Another five feet, ugh, the sweet little old lady greeter was closing in.  Just keep pushing. Just keep pushing.  Oh great.  "Hey there sweet one, you not feeling well?  Is mommy here to get you some cough syrup?" 

For the love of all that is holy, what have I done today?  I just want some milk.

Do I respond or just let her assume I'd take a highly contagious kid into a public place.  If I do tell her the truth how much does she really need to know?  I'm on a mission here.  Why is there not a drive-through in this town with gallons of milk available for purchase?  "He doesn't have a cold.  He has cancer.  The mask is to protect him, not you."  Really I said it very kindly, she was being nice, unlike the other judgmental rude woman.  But I just wanted the milk.  I tried to sound kind, but on a mission.

She started crying.

For the love of all that is holy, this milk run was the worst idea ever. Not only am I exposing him to germs, I have to expose myself to these people, bad and good.

So now instead of a surgical strike I am having a seven minute discussion with the greeter lady as she weeps for my boy.  I loved her and she was so kind, bless her heart.  But really, it's a lot like when you first have a baby and suddenly there are no strangers, everyone talks to you.  You just need some diapers, you don't want to answer five questions about how old she is today.  Kids with masks, bald or hairy heads, attract attention, there are no stealth missions with them in tow.  I finally had to tell the greeter that I should probably get him home soon and she let us go. 

It is going to happen, bald or not, you are going to be asked by a random stranger about your child's disease.  Arm yourself, no, convince yourself of this one very true and simple fact: these people have no legal rights to be given this information.  It is your choice, your mood, your right.  There is no Public Right to Information Act about your child, you have the right to say "I'd rather not discuss my child's personal medical history." You do not have to discuss it with people.  You can discuss it with people.  It's up to you, but you have the right to have a day when you just want to get the milk and don't want to hold an impromptu childhood cancer awareness conference.

If you are newly diagnosed or are rockin' out the hermit-like germ-free home bubble and rarely leave, here are some questions you may run in to when you do run out for milk. I have supplied my go to answers to help you get started on your own.

Q:  What does he have/what's wrong with him?
A:  Wilms Tumor, its a childhood kidney cancer. 
provide the name, and then tell what organ/system it is a cancer of.  use the name, neuroblastoma, osteosarcoma and then explain.  don't just say kidney cancer, even though people didn't know a kid could get kidney cancer they would ask me, "which kind?"  Some people actually think leukemia is short for kid cancer, so I would say kidney cancer and they would ask if it was leukemia.  Save yourself three follow up question, say "official name, it's a childhood cancer."  And feel free to begin with "nothing is wrong with him" if they phrase it that way, nothing is wrong with my kid, he just has had cancer a couple of times.

Q: How did he get it?
A: He didn't get it.  It wasn't caused by anything while I was pregnant with him or since he has been out.  Most childhood cancers occur spontaneously on their own, some kids are born with the cancer cells already growing or waiting to grow into tumor.  You don't have to have a family history of cancer.  If science could figure out why childhood cancers arise, we actually could unlock how cancer happens, and cure it. 
My answer to that one is kind of long, but only because it personally upsets me that people need to have a cause.  Like I fed him cherries when he 5 months old and that gave him kidney cancer, so avoid cherries.  They want a way they can avoid your situation or they want there to be a reason childhood cancer happens, something or someone to blame.  I am not to blame.  No mother of a child with cancer is.  But besides all of the finger pointing, that question is an excellent one to educate a bit on why we need research funding.  I had a cashier at a Home Improvement store start crying when I gave this answer, she replied through the tears, "I didn't know you could just get cancer, especially not with kids, I thought it was always the fault of something, like smokers getting lung cancer."

Q: How did you know he had it?
A: He was acting grumpy, we thought he was teething, he started to lose weight and I found the tumor in his abdomen and called his pediatrician. 
The answer here will depend on your child and your willingness to share details.  Some people want short and quick, some want details, how old, when, where, what was it like?  Most just want to know key symptoms so they can make sure their kid is fine. 

Q: Is it terminal?
A: His cancer has a high survival rate, but no one's outcome is guaranteed.  We just have to wait and see.
Yes, random strangers will ask you if your kid is going to die, in public, in front of them.  Obviously your answer will depend a lot on your personality, your views on faith, and the age and understanding of your child.  But it is better to be prepared for this question then have it shock you on a bad day.

Q: Do your other kids have it as well?
A: No, they have the same odds of getting it as any other child in america. 
Yup, now they are getting overly nosey. Time to start keeping your answers short and to the point. Be polite, but you do not have to explain how many kids are diagnosed with your child's cancer a year if you don't want to.


Here's one I think you really need to be prepared for:
Q: Can I pray for your child/add them to my church's prayer list?
This is a complicated question regardless of your religious beliefs.  If you are opposed to them doing so, you need to find a way to decline, preferably in a polite and delicate way.  I have heard this answer used in that regard "It would be wonderful if you put your intentions forth for all of the children who are fighting this disease, and not just my child, I would appreciate that."  If they press for your child's name, either address it from a privacy point of view, "I don't like passing out my child's full name, but thank you for your thoughts." or just restate in a different way, rinse repeat "Really thank you for your caring, all the families will appreciate it so much."  Or you can simply start out with the privacy response, "Thank you, but I'd like to keep the details of my family private."

If you don't mind, well this opens a floodgate of privacy issues you need to make decisions about that make you comfortable.  People may then ask you for your child's name, their full name.  You need to decide in advance if you will allow that, so you aren't put on the spot and guilted into something you disagree with, like your child's full name ending up on a church website four states away from a friend of your new stranger friend.  Many people are aware of caring bridge and blogger and may then ask you for your website so they can follow your child.  Yes, people you just met at the store want to have your web address.

Think that through, if you give it to them you have no control over whom they pass it to, if they put it in their church bulletin or on a message board.  For many with public sites this is not a concern, but for those of you who would rather keep things off the public radar where they can spread privately amongst friends and family, you need to be aware how passing out your address to one stranger can blossom into 300 or more strangers. 

If you welcome people wanting to know more about your child, and even your website, you may want to consider using your home printer to print off your child's name, diagnosis, and web address on a sheet of paper you cut into strips.  This is what I did, it was so much faster than spelling out our blog address at the park to a friend.  I did pass out my address to some strangers, but not all of them.  You may also want to consider having a family business-size card printed and including your email address if you would like.  You can even buy pre-perforated sheets at your local office supply store.  I found a website to print business cards for my business, I paid $25 for 1000 cards.  I pass those out now, as my personal website is currently linked there.  I would give them to Josh's nurses as well so they could check in on him.

You need to decide what you are comfortable with divulging now, because you can't take your website back from someone you'll never see again.

You will also receive a number of permutations of the same kinds of questions about treatment that are details you have the choice to share or not.  People often want to know how long, how often, which ones (because there cousin's best friend's sister has breast cancer and they remember one she took), and so on and so forth.  If you are not in the mood or a private person, I find this answer works best for nipping that line of questions in the bud: "It's rather complicated and lengthy to explain, his doctors are doing everything they can."

And this is only the most popular ones I've received during our two years of treatment.  There will be more.  Your child's diagnosis does not mean you have to become a spokesperson or a public figure.  Do what is best for your family and your situation.  Err on caution and privacy if you are unsure.