Thursday, October 28, 2010

Letter to the Editor

You know what? Between Marie Claire and the NY Times, I'm beginning to wonder if our nation's editors are drinking on the job.

Check out The Age of Alzheimer's and let me know what you think about the last paragraph. Thanks to our friends at PAC2 who brought the article to our attention.

Here's what I thought:

Dear NY Times,

I appreciate that "The Age of Alzheimer's" is listed under "opinion," but when Ms. O'Connor writes: "Medical science has the capacity to relegate Alzheimer’s to the list of former diseases like typhoid, polio and many childhood cancers," I need her to know that childhood cancer is STILL here and there is currently only a 78% cure rate for ALL childhood cancers combined. Perhaps she should rewrite the piece to replace "childhood cancers" with "Bubonic plague."

This isn't opinion; it's fact.

It saddens me that something like this was read by a thousands and thousands of people, and the majority of those will believe that we have eradicated some forms of childhood cancer. As parents of children fighting cancer, or those who have died from it, our journey to raise awareness for the disease (which kills more children than any other childhood disease COMBINED) is unintentionally sabotaged by things like Ms. O'Connor's piece.

How can we secure funding for this shockingly underfunded disease when people aren't aware that this is killing our kids?

Children DO get cancer. 1 in 5 of these will die. 3 out of 5 will suffer long-term side effects. The former Justice can easily pull up all of these facts by doing a simple Google search.

Christy Griffith

Do YOU have an opinion you'd like to share with the NY Times? Email and let them know your thoughts. You know, like how excited you are that childhood cancer is a thing of the past.

Tuesday, October 26, 2010

Surf's up, dude.

Stress, fear and anxiety can cause damage to your mental and physical health. PTSD, Post-Traumatic Stress Disorder is a serious illness that can be treated by a medical professional. If you think you may show signs in yourself, one of your family members or a friend, please speak to your doctor about your feelings and symptoms. Click here, for an overview of PTSD.

How can you not get anxiety when thinking of one of your children having an appointment for a set of scans to see what is going on inside their body; every three months. I mean, it's just cancer, right?

We refer to this post treatment stress disorder as Scanxiety.  The physical and emotional effects manifest from variables and factors and combination's of those two(or more), that vary from day to day. There are factors such as types of scans previously performed or the upcoming, where your child is in treatment, how many months OT(off treatment) they have under their belt, recent recurrences of other children you follow...scanxiety.

Gwyn is nearing her one year OT anniversary. This Thanksgiving marks the last time she has had an MRI or a CT scan. Oh, this freaks me to no end. Let me break it down for you. Details of a MRI allow the good docs to determine the presence of diseases that may not be found with other imaging methods such as x-ray, ultrasound or a CT. The CT is detailed cross images of internal organs, bones, soft tissue and blood vessels. CT scans are used to monitor response to chemotherapy. Ultrasounds show a clear picture of soft tissues that do not show up well on x-ray images. Gwyn has had an ultrasound and a chest x-ray, along with the typical blood work and urine sampling at clinic every three months for the past year.

Scanxiety Cove. Sets of emotional waves. When the waves swell, you gotta drop in and carve it. Own it.

This is what I personally know of scanxiety. The first OT scan was a no brainer; last chemo for Gwyn was only a few weeks prior, so no stress while waiting for the results. The 2nd OT scans were the first set of real "they were right, there is comfort in chemo" scans we went through. 3rd set, I remember feeling "hey, it was easier this time". But, I swear, the week after Gwyn received the NED results, I had one of the worst feelings. I thought that too much time had elapsed since the last MRI & CT to feel safe. It was such a sucky feeling. Like I wasted a perfectly good scan appointment on the wrong ones. I was robbed. I wanted a do-over. Scanxiety.

What I see for the common denominator in recurrence diagnoses is the type of scan. You know, a MRI and/or a CT. Those guys perform to find the new growth from the devil disease like it is their job. Those are the scans that steal the commemorative plans of families and shed a new light on the "highly curable" pediatric cancer statistics. Those scans are typically performed annually, unless radiation has been part of treatment and then it's semiannually. Sca-sca-scannnnxiety.

The first week of December, Gwyn will have that first annual MRI & CT. The first one in a year. My Scanxiety Tsunami is coming.

Monday, October 25, 2010

My kid sheds better than your honor roll kid.

What should I do with all this hair my kid is losing?

20% of you said Save it for Nativity grass.
20% of you said Strategically place it on your plate for a free meal.
60% of you said Tinsel!

My take as a non-licensed but fully operating psychologist:
20% of you will probably use your new Nativity grass for Easter grass. Reduce, reuse, recycle!
20% of you are morally bankrupt.
60% of you know how to have a good time, leading me to believe you throw kick-ass parties.

Thursday, October 21, 2010

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.

Tuesday, October 19, 2010

Zitis attack! Meal Train fights back!

This here's a post both for friends and cancer families.

You know what's really nice to do for someone when their kid is going through treatment? Bringing over a home-cooked meal; it's pretty awesome. Whoever said the way to a man's heart is through his stomach hasn't eaten with me. Eat, eat, be merry. Burp and eat some more.

If you would like to organize meals for a family, let's start with the actual organizing. As of this moment, consider yourself freed from countless Reply All's. Spare your friends the agony of having to add their names to a list with dates only to get 14 emails simultaneously with 14 different people signed up for the same day. It's painful to check emails on these days when all you want to do is something helpful.

Get thee on over to Meal Train. With a quickness.

It takes a minute to register. Do not let this put you off. It is well worth your time.

For the organizer, you will get to set up a calendar and select the dates you want food to be brought to the recipient. My recommendation? Every other day. We were so lucky to have people bring us food every single day, but there's only so much space in a refrigerator. Fortunately, we have a large freezer and were able to save our leftovers. But not everyone has a large freezer. And most people bring a large enough meal that there are ample leftovers for the following night.

(I love leftovers. They are my favorite breakfast. Skip the Cheerios, pass the Tuna Helper.)

For the people participating in your meal train, you will be able to see what date everyone has selected and what dates are still available. No more reply all mishaps. What's the bestest is that you can see what everyone plans on bringing.

Disclaimer: I am not in any way ungrateful for the outpouring of casseroles we received. We loved each and every one of them.

But, damn. We got a lot of baked ziti.

And by a lot, I mean more specifically nineteen. This number does not include the baked rotini, baked spaghetti, stuffed shells, or lasagna. I am honored that we even have nineteen different people who would want to bring us dinner. It's just...nobody had any way of knowing how much baked ziti we were getting.

We really like Italian food. It was all yummy. But baked ziti only comes in one size: gigantic. And one baked ziti was enough to get us through at least three dinners. Nineteen baked zitis without a freezer will make you constipated.

And cancer parents, if you do happen to get a lot of baked pasta, keep some jars of pasta sauce and mozzarella on hand. Sometimes the freezer will make baked ziti kinda wonky if you leave it in there a little longer than you should, but extra sauce and cheese makes all ziti equal.

Soooo...take a moment to read what others are bringing when you consider what meal to prepare. Just sayin'.

Another cool thing about Meal Train is that you can see both the favorite meals of the recipient as well as the dislikes and allergies. So if the family doesn't care for tube-shaped meat products, you can feel confident in your decision to not bring over hot dogs.

No worries about getting lost to the family's house. You can find the address as well as a map in the side-bar of the site. And not only will you know what time to drop off the food, the family will know what time to expect you, since the organizer gets to input the preferred drop-off time.

Meal Train will email you when it's your turn to start cooking. So no excuses about signing up to bring someone a meal and forgetting about it. It can really suck to have multiple hungry preschoolers crying for food when you get home from a day at the hospital and you're just not sure when to call it and defrost the ziti.

I swear, I am not getting paid by Meal Train to write this. I just really dig me some Meal Train.

There's even an option to enter "Special Instructions." Maybe something cool, like, Knock three times on the bathroom window or Wear a trench coat with a red rose on the lapel. Or just, Please don't ring the doorbell, my kid is sleeping off some chemo.

People like to bring food. We all like to eat food. We all love it that you are taking the time to pamper us with your secret family recipes. (We all get sick of hospital food, except maybe the extra special Ninja sushi rolls from the Duke cafeteria, but that's another post entirely.)

A friend of mine says she saved her maternity pants and turned them into "Thanksgiving pants." We should all be so lucky to be able to break out the Thanksgiving pants when the comfort food rolls in. Let the emotional eating commence!

Monday, October 18, 2010

No offense, but I hate you bro.

The relationship had a rocky start. I knew I would meet Broviac on the day of Gwyn's surgery. I knew he would act as the vehicle to administer the toxic chemicals to my 12 month old daughter that would clean up what cancer may have left behind after the tumor extraction. I knew we had to make nice for at least the next 6 months.

Gwyn was diagnosed, admitted, had surgery and discharged in 5 days. Everything happened so fast, I compare it to a category 10 hurricane that hit without warning. With a natural disaster, you have readiness, response and recovery. In pediatric cancer, you have no warning. It hits, you respond and you spend the rest of your life in recovery. Pediatric cancer is just unnatural.

Cancer aside, seeing your child in a PACU, still under anesthesia and recovering from major abdominal surgery is not easily prepared for. When I saw Gwyn, she looked perfect. I remember her skin had a beautiful color, they had pulled all the tubes from surgery already and she looked as if she was peacefully sleeping for once. Her arms were beside her, opposed to above her head and for the first time in months, her breathing could not be heard; the cantaloupe sized tumor took up a bit of space in that little body. The anesthesiologist spoke about the surgery and described any new marks Gwyn might have on her body. Then he lifted her gown and showed me the incision, which looked great to me. It was smaller than Dr. Weiner had projected to us, but maybe it's like seeing that movie after everyone else has seen it and you have this expectation that it's going to be a waste. Turns out, it wasn't half bad. So yeh, after the debut of the scar, the gown went higher as the word Broviac was uttered. Oh, crap. I forgot about him. Well, there it was. A six inch white tube coming out of her chest with a pretty large clamp and a single lumen at the end. Hmm. looks harmless enough.

But he wasn't harmless. Over the next few days, he got as much attention as Gwyn's vitals. He was needy. On the morning of discharge, the bro, the husband and I were given a formal introductory. We were given a crash course on how to properly care for it in one hour and then given a pop quiz. We were even given this vinyl manikin with a Broviac to practice on. You know, how to flush it with saline and heparin every other day, change the cap twice a week and the dressing at least once a week. My head spun and my stomach turned nauseous. Not that I cared that I had to give this new maintenance for one of my children, they had me unnerved at  "guard this with your life". I was a mess just watching husband follow instructions on flushing the line on the dummy. Just as he took his first practice run, he started to push saline through, the abused line broke. As in, the force from syringe push made the central line explode, leaving husband holding kibbles and bits of this colicky beast in his hands. If you could have seen the train wreck in husbands eyes as I gasped... time stood still...then our gal Carrie; HemOnc extraordinaire burst into laughter. "Don't worry guys, this won't happen at home. But now that this has happened, we can talk about if it does happen at home."

We were given a set of rules before Gwyn was formally discharged. You know, simple things like don't get it wet, don't let it come out and guard it with your life. Take the handful of hemostats we gave you and put one in the car, one in the diaper bag, one in the purse and tape a pair to the fridge. (wow, sounds like a special agent with a weapon. maybe i should have had an ankle strap made for a pair) Beside the hemostats on the fridge, I placed a ziploc with an extra large patch and a wad of sterile gauze in case the line was pulled out of place. You want to give the patch an inspection every day to make sure the adhesive is still sealed well because of the high risk of infection on this guy. When we went outside to play, I would make Gwyn a Press'n Seal tank top before dressing her because of the sand box. I worried about sand getting wedged in the cap and us pushing it through. She would crinkle when she moved, so we gave her the name Miss Crinkle, just like one of her sensory toys. The hospital gave us this mesh stocking that they use for burn victims, so we could cut a length and fashion a strapless bra. This wonder mesh held the Broviac in place against her chest and the onesies made sure if it did happen to snake its self out, it was still somewhat secure.

Flushing the line every other day was simple enough once you corralled and held the toddler down. The dressing change was a bit painful. I sat on the couch, turned on Yo Gabba Gabba and activated the spider monkey lock hold on Gwyn. I would sit up, she would sit in my lap and lean back on my chest. I would cross one of my legs across her legs and use my arms to hold hers back, then try to keep her head turned away from the site as husband would proceed to clean it and put a fresh patch on it. Think OR. Think sterile environment. You need to act as if you have entered the operating room and you have a patient on the table with an open chest wound involving a jugular. Remember, "guard this with your life". Put on your mask, scrub in. Don't touch anything until you put on the gloves, but the gloves are in the sterile packet and you have to get in there and your assistant is holding the patient(and your other child probably forgot to wash his hands after the last potty break, don't ask him), so you carefully open the kit and unfold the sterile "tray" with tools for the procedure and find the gloves. And that was steps 1-6 of 40. This 30 minute procedure happened once a week for 6 months. In the beginning, Gwyn cried. Jake cried. I wanted to cry, but Yo Gabba Gabba had a way of distracting us all and we eventually toughened up and trimmed a few minutes off of our weekly ritual.

The "My Central Line Book" that was given to us at our crash course in the hospital helped big brother see other families were like ours. When I placed the book on the coffee table just now to take a photo, Jake remembered that bro we used to have to care for. He and I agreed...we don't miss him.

This bro is so dangerous, he has a few aliases. Broviac, a.k.a. Central Line, a.k.a. Hickman Line.

Thursday, October 14, 2010

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.

Monday, October 11, 2010

Chemo Angels

Do this now. Thank me later.

So, I have this friend who I call Dumbledore. She's infinitely wise on all things pediatric cancer. I defer to her repeatedly when there's something I want to say, but long to say it articulately. I'll share her with you sometime soon if you're nice.

(Get yourself a Dumbledore when you have a chance. Add it to the list.)

One of the coolest things Dumbledore told me about was Chemo Angels. Be warned, the application is going to take you a good twenty minutes to complete, but it is worth it. Take your time and be specific. You get these "angels" who adopt your child and send them cards and/or packages every week. Eve had two Chemo Angels who sent her (and often times, her siblings) thoughtful gifts in the mail.

Why do it NOW? Because it takes time to get approved. Because you need to be ON chemo to get approved. Because why wouldn't you want your child's face to light up every time they find something for them in the mailbox?

There are stipulations, and you can see them here. Even if you think you may not qualify, apply anyway. Eve was about two months from finishing treatment, and she was adopted.

The way Eve melted into a puddle of awesome every time she opened a card was priceless. You'd think they mailed her the cure to cancer.

Alrighty? Do it.

10-4, good buddy. Over and out.

Saturday, October 9, 2010

Thomas Boom Button

My son Jake was 3.5 years old at the time of Gwyn's diagnoses and since preschoolers become emotionally responsive to everyday events, we saw the effects of cancer on Jake. He started having accidents after being potty trained for a year and a half, then the night terrors came, demands of not eating anything that would make him "sick"...especially candy from trick-or-treating at Halloween. In fact, Jake called off Halloween. He canceled his 4th Birthday and Christmas.

Jake became obsessively scared to "get sick like sissy and go to the hospital". As soon as I noticed the signs, I spoke to a social worker, I went online to seek foundations that could help children under this sort of emotional stress, I signed up for a sibling program....nothing. I waited, then reconnected with some of the mentioned resources and waited some more. Frustrated and discouraged, I abandoned the idea of outside help. If not for my background in Early Childhood Development and years in the classroom teaching "challenging students" and practicing techniques that actually work, somebody would be in therapy right now. *achh-hem*

In the last month of Gwyn's 6 month therapy, we received a packet for Jake with some coloring pages. The day we came home from clinic for Gwyn's last chemotherapy, Jake received a trophy in the mail for being a Super Sib.

Jake escaped into his own world of hairless wonder. We enrolled him in an educational computer program I used in the classroom; JumpStart. He would spend hours on the computer at a time, learning, exploring and earning points.  When creating your character, you can select all the little styling details such as clothing, head shapes and skin tones, eye color, hair style and your name. Jake, a.k.a. Thomas Boom Button, played around with his styling from time to time, but the unchanged factor was the bald head and his signature number one navy blue shirt. I'd be lying if I said it didn't affect me.

One day in the month of October, Jake said "I want to be an Imagination Mover for Halloween". (again? he was that last year. quick, think. how to react. don't make a big deal or he might withdrawal...don't acknowledge and the costume is toast.) "Cool Jake, we already have that costume". Then, YO GABBA GABBA started airing their Halloween episode every other day. And since that is what Gwyn watched for every Broviac dressing change and flush, the song with the phrase "too much candy's gonna make you sick..." was sent to Jake as a message. Halloween was canceled again. Don't worry, I took the costume, we went to Mimi & Clyde's and watched the trick-or-treaters come knocking. 30 minutes after passing out candy to an army of little goblins, Jake was jumping out of his skin and into his costume. We went, we received, we returned. We dumped his loot on the table and sorted..."Jake, only pick 3 candies. Too much candy will make you sick".

In November, Jake turned 4 with a handful of witnesses to see him eat cake and not "get sick". December came and Gwyn had her Broviac removed in light of her updated status, No Evidence of Disease. Santa came to town and the New Year began.

Here we are, back at Halloween.
me - "hey Jake, what do you want to be for Halloween this year?"
Jake - "an Imagination Mover"
me - "sorry, that costume is way too small for you, look in this catalog and pick something"
Jake - "okay, how about a shark!"

Wednesday, October 6, 2010

The Worrier

My daughter is 19 months older than her brother.  At 19 months, her life, as she knew it, changed when we brought Josh home.  19 months later we brought him home from the hospital, for the second time, and her life changed all over again.  She now became a Super Sib, big sister to a pediatric cancer patient, at the ripe old age of 3 years and 2 months old. 

Penny has always been a worrier.  Our disappearance for a week as we fought for her brother, it broke a little part inside of her.  The part where she never worried she would be left all alone.  The nightmares came-  Josh would run off into the woods, we would chase after him, no one would come back for her.  We got her a counseling session with our hem/onc team therapist (she had an accident on her office floor, from worrying). We became a family of small and large routines, all to try and comfort her, to make her feel safe.  But fever admissions would come, and plans would get canceled and upheaval would set her back. 

I wish we knew Wemberly back then.  I got this book for Penny this past summer.  She was worrying again.  Well more than lately normal.  She worries a lot.  She worries about her little brother, she is 5 now, it's been her job for 2 years now.  Coming off of back to back treatments has been a lot harder on all of us than we could have anticipated.  And once you relapse, well, not only do your survival rates go down, your recurrence rates go up.  I can't tell her it is all going to be ok, we can only hope.  So she worries.  Penny worries about people who don't recycle.  Like in a major way.  She worries about a lot of things.  So does Wemberly.

I love this book.  It made my daughter feel normal.  I would hug the author if I had the chance, it is wonderfully and playfully written but also provides such a great little lesson.  It made Penny able to laugh at herself.  And Wemberly worries way more than Penny does.  And Wemberly has a worry fest about going to school.  And you know she doesn't stop worrying, but she learns, well, you can't be paralyzed by that worry.  And sometimes things are better than you worried about, and you find yourself forgetting to worry.  Wemberly also meets a friend, someone who worries as much as she does.  Penny loved that idea, that she wasn't alone in worrier-ville, that out there her Petal was waiting to be her friend and worry with her.

This book would be a great one to add to your library reserve list.  It would be great gift for a young patient, to open a dialogue or just ensure them, it's ok to worry.  I think it is really wonderful for siblings or little friends who have lost a little innocence and now find themselves overly worried, or even just more worried than they used to be. We had a great discussion about things I used to worry about, things I still worry about. 

Wemberly is easy to relate to and lovable.  Josh loves this book too.  They love to read Wemberly's little worries in their little theatrical worried voices. And the illustrations are very sweet and age appropriate.

Normalizing things that are scary takes some of their power away, and that is the message of the book.  It's not that you are going to stop worrying overnight, but if you can teach a child, that it's ok to worry, that it's what people do, then it's power, it's scary-ness vanishes.  Like port accessing, or getting vitals taken.  Super scary the first few times, but once you see chemo duck do it, or the other kids in clinic, it's not as scary.  The same goes for emotions.  It is important that we share with our children and their super sibs that we are worried and scared, that we are angry at cancer, that we want it all to go away.  Be strong for your children, but be imperfect too.  It's ok to let them see you cry, or worry. 

Just maybe don't admit out loud that you are worried there is a snake in the radiator.

Monday, October 4, 2010

Cuck Fancer.

For the rest of the unaffected universe, Childhood Cancer Awareness Month can be put back on the shelf to collect dust until next September. For a lot of you reading this blog, Childhood Cancer Awareness Month runs the other eleven months, too. What a sucky calendar we are dealt. It's like a Page-A-Day with nothing but Cathy comics. Ack!!

Two classrooms of children will be diagnosed with cancer today. Are you listening? It would be all over the news if two classrooms of children were held hostage by gunmen. Why doesn't anyone care that 730 classrooms of kids each year are being held hostage by cancer?

Why don't more people get pissed off that 1 in 5 of those kids will die? Great odds if you're playing the lottery; lousy odds if your kid is diagnosed with cancer.

It's never going to happen to your child...until it does.

Now come get pissed off with me and do something about it.