The last day of 2010

2010.  You've been a hard, hard year.

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

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

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

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

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

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

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

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

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

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

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

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

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

Taking Away the Chemo-Crutch

Amber is mom to Julia, another Wilms warrior. The following post is her take on being off-treatment (OT); turns out it's not as easy as you'd think.

End of treatment was definitely a hurdle for us. Julia has just passed the one year OT mark. We felt all the emotions of fear because we were no longer actively fighting the cancer anymore. We also did not have the security of weekly trips to the clinic for reassurance, encouragement, and answers to our questions. There was also a sadness in leaving our clinic family- the nurses, child life staff, art and music teachers, doctors, and other families are a family to us now and it was hard, especially for Julia, not to see them regularly. You feel like a baby bird being kicked out of the nest. It is natural and needs to happen. When you try to fly, you find your wings are damaged from all you have experienced. You will find a way to fly one day. It may not be pretty and it will not look like everyone else, but you will fly. And in the future you will catch yourself soaring above the trees and smiling.

Being off treatment was also the first time we began to really process everything. During treatment, God really protected us from fully feeling what was happening. I would look back and read blog posts I wrote or look at pictures of Julia and it took my breath away- especially the ones from surgery, transfusions, illnesses, etc. God protected us from really seeing her the way she was. I had many days of depression in the months following. Some days we hardly got out of our pjs and got very little accomplished. It's all a part of the PTSD cycle. When you have been through a trauma like this you have to "feel" it and work through it at some point. There are still days of tears or surprise emotions, but as time goes on, they get fewer and farther apart. If you avoid it now it will come back later. Unfortunately, like cancer, this is part of the fire you have to walk through if you want to come out on the other side and begin to walk away. There will still be sadness, especially for the suffering and loss of other kids you know with cancer. Scanxiety is still very real. A fever will never be just a fever and an illness will never be just an illness. We have found ways to get positively involved with other cancer families and causes and it has been very empowering for all of us to be "doing" something to conquer this beast.

The kids also went through their own process. They both had questions and fears about what had happened and it all came out slowly (my other child is 6). It was the first time we really had a chance to talk about everything that happened and find out where they each stood. It took almost a year to wean Julia off the extra TV and special treatment. She also hadn't had much in the way of discipline in two years and had fallen into a bad habit of whining. She was 2 when she was diagnosed and is now 4. We were essentially starting over with her. For about 6 months after treatment our lives didn't change too much. Julia had really low counts at the end of treatment which lasted for 7 months off-treatment. She was hospitalized several times with fevers, even OT, so as long as the port stayed in and her WBC was so low, we kept her away from group child settings and kept her in a stroller in public and a mask when she was out.

It was very reassuring to talk to other moms and find out that they all experienced the exact same thing. They too had days of tears, struggles with their other children, retraining with their child with cancer, fears that pop up, etc. It is all very normal. We have also found that the more we have allowed ourselves to feel and heal, the more whole we feel. We will never be the same as we were before cancer, but we are better people and have found many ways already that God is using this in our lives.

You can follow Amber's blog here.

The Soapbox.

The following is a speech I delivered last night at a Casino Night fundraiser for CureSearch. I had to face my fear of public speaking head on, but my message is bigger and more important than my fear. My name is Christy, and I'm not here to make you cry; I'm here to help you empty your pockets to a cause near and dear to my heart.

My name is Eve's mom, but I also answer to Christy.

In 2009 BC, before cancer, I had no worries about my children's health. Cancer was just something that happened to other kids. In 2009 AD, after diagnosis, I became a card-carrying Cancer Mom.

I hope no one else here has to be initiated into that club.

It was Monday, October 19, 2009 and I took Eve in for her two-year check up. The pediatrician felt a lump in her abdomen and told me to take Eve to get an ultrasound. For some reason, I wasn't particularly worried about it. I thought she might have been constipated or maybe she swallowed a ping pong ball when I wasn't looking.

I took her in for the ultrasound on Friday the 23rd. Had I known she had something inside of her that would double in size every two weeks, I would have made the appointment for Tuesday! It's very hard to get cancer, and it's even harder to get cancer on a Friday afternoon. Cancer does not respect business hours.

We first saw the enemy during that ultrasound. I am not a sonographer, but I knew that those dark spots should not be on the screen. I started to sweat when the tech stayed quiet and wouldn't look at us before leaving to get the radiologist.

And then they whispered. Oh, may you never have to be present while they whisper and point at the screen.

That Friday was the first day I had ever heard of Wilms tumor, a type of pediatric kidney cancer. The one thing you don't want to hear when your child is diagnosed with the C-word is well, if you're going to get cancer, Wilms is one to get. To me, that's like saying, Well, if you have to get a limb amputated, the right leg is the one to lose.

This was my two-year-old. I don't care what the odds are, for me as a parent it's 50/50. Either she's going to make it, or she's not. I don't care that 90% of children with Wilms survive. That still means that children die from this. If there was a 10% chance that your child would be kidnapped if you let them into the front yard to play, would you ever let them outside again? Hey, I've heard great things about the University of Phoenix online. They never have to leave the house again!

Over a few hours, we were given a crash course in what would be Eve's treatment. In the US, if you are one of the 400-500 kids diagnosed with Wilms tumor, you will immediately be rushed into surgery to remove the kidney with the mass. Two kidneys are way overrated, anyway.

But, just to complicate things, Eve had bilateral Wilms, meaning she was one of the 5% of kids who have tumors on both kidneys. Most children will have one tumor on each kidney; Eve had 13 between the two. I think we started out with the words "It's complicated" stamped on the front of her chart. Those are two words we heard a lot during Eve's care, and believe it or not, they aren't the most comforting in the world coming from your medical team.

Since Eve's cancer was on both kidneys, the doctors didn't want to go in and remove both of those organs, because apparently they're pretty important. After consulting with fellow COG doctors across the country, it was decided that Eve would undergo some fairly aggressive chemotherapy to shrink the tumors before surgery, with hopes that we could save some of her kidneys.

The worst part of that initial hospital stay was the consent forms. They are required to list any side effect that any child has ever experienced while on these drugs. If you think it's scary to be told your child has cancer, the endless list of devastating side effects is just the cherry on top of the world's worst sundae.

3 out of 5 survivors will suffer from long-term side effects. Eve has a respectable sized list of potential side effects herself as a result of her treatment. She's at risk for secondary cancer. Heart damage. Liver damage. Bowel obstruction. Orthopedic issues. Learning disabilites, just to name a few.

So you can imagine how much fun it was learning about all those drugs we would be giving her every Friday for 12 weeks.

Eve had her first surgery that hospital stay to place her port, which is a device implanted under the skin that is connected to a catheter leading to the heart. The port was used for Eve's endless blood draws, chemo treatments, sedation, and blood transfusion. My two-year-old got a little too used to this new crazy cancer world, and would lift up random people's shirts looking for their port. Because she just knew EVERYONE goes to the hospital on Fridays to get poked and pumped full of drugs.

And each Tuesday we would go to the pediatrician's office to get her finger pricked to check her blood counts, which were pretty much non-existant while she was on treatment. Eve would always remind the nurse, well, more like demanded that they take her blood pressure each visit, too. This was the one thing that made it all easier for me as a parent, watching my daughter boss around medical professionals and tell them how she wants them to do their jobs.

We couldn't keep up with all of Eve's medicine, so we started making charts. It's sad to think that your 2-year-old is on so much medication at home that you have to mark off each dose on the chart on the refrigerator. I'm thinking about adding pharmacist and honorary-oncologist to my resume.

The hair fell out 2 weeks into chemo. I was finding it on my clothes, in my food, in my mouth...everywhere but Eve's head. We all got used to it pretty fast, but the startled looks from those who hadn't seen her in a while were quite jarring and quickly reminded me that I had a very sick kid.

If getting cancer on a Friday is bad, you know, when all the radiologists pack up and go on vacation for the weekend, then getting cancer during Swine Flu season is even worse. Chemo strips you of any recognizable immune system. The seriousness of the situation was hammered into us with consequences of getting a fever- immediate hospitalization, isolation, delay of chemo. Do not pass go, do not collect $200.

So, we lived in a self-imposed bubble for as long as Eve was on chemo. If it wasn't a doctor she was going to visit, she didn't leave the house. Our other children weren't allowed to bring friends home anymore; we farmed them out to other people. No one could come into the house without first washing their hands and using their fair share of sanitizer. And if you looked suspicious, you had to wear a mask. And then there was the nightly wipe down with the Clorox wipes on every surface that wasn't moving.

We turned into neurotic germaphobes, and this is coming from the woman who once watched her oldest child bury a cracker in the mulch at the playground and then go back the next day to dig it up and eat it.

I guess we all struggle to take control over something when we're powerless over so much. Our family just decided to wage a personal crusade against germs.

As we went through treatment, it became obvious that cancer wasn't going to stay in our little family circle. Our parents spent a great deal of time with us to help out. Their coworkers donated personal leave to make this possible. Our friends took our other children and made them feel special, when I was more Eve's mom than anyone else's. Our neighbors showered us with food and sometimes after a particularly rough day, an anonymous bottle of wine or two on our front door step.

Our 4-year-old understood what was going on pretty well and would explain to others that Eve had tumors in her belly and chemotherapy was going to shrink them so the doctor could cut Eve open and take them out easier. Our 3-year-old didn't understand as much but would, and still does, talk about Eve getting cut in half, which also happened to be his favorite act at the circus.

A month into treatment, I overheard our older daughter tell Eve she was so sorry. Natalie was convinced that she gave Eve cancer because she once gave Eve a kiss when she was sick.
Talk about mommy guilt. For a 4-year-old to walk around for a month thinking she is responsible for her baby sister losing her hair and getting poked all the time was just too much. I had to focus on not only being Eve's mom, but being Natalie and Daniel's mom, too.

And that's pretty hard when you are in the trenches. I still haven't figured out how to be in multiple places at once; I'm not Santa Claus. So I'm just going to have to ask forgiveness from the kids if they end up in therapy as adults because Mommy missed one too many preschool parties. This cancer business is a full-time job.

The holidays were rough and it was obvious as I began doing stranger things, like foregoing Christmas turkey for Indian food. Eve's blood counts were very low on Christmas day and she didn't have the energy to tear into packages like the kids who aren't bald, pale, and lethargic. We got to spend the next day in the hospital giving Eve her first blood transfusion so she wouldn't look so much like Tiny Tim.

In January, after many rounds of chemo and many scans, it was decided Eve was ready to have her big surgery. We were hopeful that some of each kidney could be saved, but Eve ended up losing all of her right kidney and part of her left. The surgeon said we need to make sure she doesn't injure the remaining kidney, so he forbade Eve from playing football. You can be whatever you want to be when you grow up, Eve, except a linebacker.

Finding my child waking up in the Pediatric ICU after surgery was shocking. I cannot imagine the fear that she must have felt when she was coming to. Not only was her port accessed, but she had two IVs, an NG tube in her nose, a handful of leads on her chest and back, a catheter, and a pulse ox monitor, among the things I can remember. She was literally tangled in tubing. And, there was a 6" incision on her abdomen.

That week in the hospital wasn't pretty. But we all survived, a little worse for wear.

Eve's tumors were sent to a central review lab in Chicago to be studied by a COG pathologist who looks at just about all cases of Wilms in the country. She found evidence of anaplasia, or unfavorable histology, or as we like to call it, another complication. Anaplastic tumors do not respond to treatment as well as those with favorable histology. Wilms is the cancer to get until you start adding up all the complications and realize your chance of surviving is now down to 55%.

So we signed more consent forms and Eve started radiation therapy. It has definitely changed my perspective about getting x-rayed or being screened at the airport. You haven't seen radiation until you've seen it coming from a machine the size of a minivan enclosed in a room with 4-foot thick walls.

And the looks from the other patients, who were all at least fifty years older than Eve, again reminded me of our situation. It's a different kind of sad to be the only child in the waiting room.

Scans, radiation, blood work, more chemo, more scans, more bloodwork...this was our life for the next few months. But I'm happy to share that as of May, Eve shows no evidence of disease. Right now, she goes into clinic for scans every three months and will continue to be scanned for the next five years. My life is currently measured in 3-month-increments, where I go through something called "scanxiety," a term used by cancer parents worldwide to describe the anxious feeling when scans are looming. Eve won't be considered cured until she is 5 years off-treatment. I suppose I still have a good 4 1/2 years of scanxiety to go, provided the cancer doesn't rear it's ugly head again. Because I really don't think I could stomach any more complications.

Eve had her port removed in October. The surgeon gave it to me, and it now hangs on our Christmas tree, covered in glitter. Yes, it's weird, but I've done much stranger things this past year.

Eve is currently an aspiring ballerina and attends preschool. I am pleased to report that my biggest issue with Eve right now is potty training. When she was on chemo, we had to wear gloves to change her diaper. I used that as an excuse to delay potty training because if I had to glove my hands, I most certainly didn't want chemo pee on my carpet. I can't use my chemo excuse anymore, so now we're diving headfirst into the new normal of childhood. Accidents and all.

It's hard to get back to normal. I got used to that chemo-crutch, feeling like the cancer would stay away as long as Eve was on treatment. But I'm doing my best at this whole normal thing, and have even come up with the Griffith Law of Sympathy: The amount of sympathy is inversely proportional to the amount of hair, if hair growth remains constant. In other words, Eve, your hair is too long to be using Sharpies on the couch.

Cancer kills more kids than any other childhood disease COMBINED. Eve is not out of the woods; her disease could come back. She's at risk for long-term side effects. We need research dollars to develop drugs that don't do as much harm as good. We are still treating our children with drugs from the 1950s. We need to develop drugs specifically for kids, instead of passing down adult ones. There has only been one childhood cancer drug developed in the past few decades. Can you imagine the outrage of mothers if we were to take Flinstones vitamins off the market and replace them with an adult multi-vitamin? Why is there no outrage about how we have to poison our children to save them?

Two classrooms of children will be diagnosed with cancer today. That's a lot. If two classrooms of children were held hostage at gunpoint, it'd be on the news. Unfortunately, it's up to us to raise awareness. This is definitely a grassroots effort. I was shocked to learn that only 3% of cancer research dollars in this country go to pediatric research. And that's for ALL childhood cancers combined.

1 in 5 of these kids will die. Great odds if you're playing the lottery; lousy odds if it's your child.

Childhood cancer has a name; her name is Eve.

If you would like to donate to CureSearch, click here.

No, Doc, we NEVER let them have more than 30 minutes of screen time a day...

What American Academy of Pediatrics parenting "DON'T" has your cancer child reveled in the most during treatment?

66% of you said Television...endless television. Disney FastPlay even takes the work out of having to restart the movie.
16% of you said Pacification by candy. You mean, you're NOT supposed to buy bulk bags of Dum Dums to take to clinic?
18% of you said Throwing tantrums to get you to cave in and let them watch more TV and eat more candy.

Hmm...I think if we're all being honest here, 82% of you felt too guilty to admit that the secret to a happy bald kid is candy + TV.

Believe me, we've all got bigger things to worry about than empty calories.

Gobble, gobble, thanks.

We here at Red Dye #48 and all of our fans would like to express our thanks to the following members of the medical community for touching our lives:

Nurse Marisol
Nurse Jen
Nurse Mandy
Nurse Morgan
PCA Krista
Dr. Setty
Dr. Rinalli
Dr. McKenna
Dr. Yeager
Dr. Adino
NP Amy
Nurse Amy
Nurse Sharon
Nurse Rachelle
PCA Jessica
Nurse Gina,
Dr. French,
Nurse Kelly
Dr. Nanagas
Dr. Shamburger
NP Kathy
Dr. Leoffler
Dr. Munt
Nurse Dottie
Dr. Wechsler
Dr. Dome
Dr. Perlman
Dr. Larrier
Nurse Anne
Nurse Brooke
Dr. Hoehner
Nurse Russell
Dr. Eck
NP Jen
Social Worker Laurie
Dr.Chip
Dr.Weiner
Dr.Blatt
Nurse Heather
Nurse Cindy
CPNP Carrie
Nurse Ruth
Nurse Stephanie

Numbers

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

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

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

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

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


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


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

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


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

The Heartburn

Lately, lots of things have been giving me heartburn.

(I will not change my eating habits, no siree. I will eat generic Tums all the live long day.)

Most recently, my kids have been giving it to me as well. Is it the, umm, "sibling rivalry?" (That term makes it sound much less obnoxious than it appears in real life.) I have found that when Natalie is away for nine hours a day during the week, the number of fights does not decrease during the remaining five hours she is present with her siblings. It just gets more concentrated.

(I know, I know. It's so very unintuitive.)

And this, my friends, gives me heartburn. And I already ate all the yummy orange-flavored generic Tums and what I have left are the crappy lemon ones that taste like yellow chalk.

Thank goodness they love just as hard as they hit. (The kids, not the Tums. I have not been hit by an antacid...yet.)

But today's sudden onset of the hot spit comes from an entirely different source: scanxiety. It does not present itself in a gradual, gentle manner. It barrels down on you like a Mack truck. And I feel like roadkill. Roadkill with heartburn. You think you have a break and then it comes back in ten-foot tall waves. Waves of nausea.

Eve has scans. Must buy more Tums.

I think I know what my problem is.

I do fine with CT scans; it's the ultrasounds that put me in a rocking chair staring blankly ahead.

We first saw the enemy on an ultrasound. I am not a sonographer, but I knew that those dark masses should not be on the screen. I also know the techs are not allowed to tell you anything about what they see. I first felt my heart pop out of my chest when the tech stayed quiet and wouldn't look at us before leaving to bring the radiologist in to look at the pictures.

And the whispers. Oh, may you never have to be present while they whisper and point at the screen.

In fact, just writing this down is sending me into a mild panic attack. Snack break!

But a CT, well, there is no reason for you to be in the room if your child is sedated. I prefer to read a book in the waiting room. I have no reason to see the radiologist. He's just a person behind a wall that I'm never going to see, even if something is wrong. I don't need to make myself crazy guessing what their facial expressions, grunts, and wayward glances mean.

And better yet, I can't see the images.

But I just need to ride Eve's vibe. She's not worried about a thing.

And a chest x-ray to check for any metastasis to the lungs? Ha! I scoff at the cross-hairs of an x-ray. This is radiation for pansies.

Eve doesn't appreciate being asked to give up her chocolate-dipped marshmallows on a stick to sit still, though.

She is reunited with chocolate-dipped marshmallows. The stink eye is gone.

Good news is that the preliminary reports showed that everything is looking a-okay. No new tumors. No changes in the nephrogenic rests in her remaining kidney.

Only 18 more months of scans before she's out of the high-risk relapse woods. I'm just taking it one scan at a time. Like I have any other choice.

So now the scanxiety-induced heartburn is gone. Time to go to Taco Bell for our celebratory lunch!

(I much prefer the taco sauce heartburn.)

Two tacos, a crazy mother, and a full morning of appointments later...

I guess I can put away the Xanax until next year.

A Case of the Mondays

Just let me look that up for you, mommy.

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

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

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

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

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

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

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

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

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

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

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

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

Circled in Ink

Today is scan day for our good friend Dumbledore*, last night she had to get the scanxiety out of her mind, I think her words will touch you all.  We are all rooting for you Little Warrior, scan time was 7 am.

We call it living between scans. If you get the dreamed-of “NED,” you enjoy a moment
of … well, it’s not really joy or celebration. Relief. For the moment. And you learn
to dive into life. Not ignoring reality, but not dwelling on it, either. Living your new
normal. And you do things you couldn’t anticipate during treatment. Get stressed out
over stupid things like traffic and work deadlines like in the olden pre-cancer days.
Come in the house and DON’T wash your hands. Fuss at your kid.

And then … it’s time for scans. Scan-xiety kicks in. When? A week before, a few days?

Distraction helps. I’m in seminary. Big test last week, lots of studying needed. And a
world religions project. Then a big ass Halloween party at my house. Halloween. Trick
or treating.

It is the night before scans. A biggie. Two years ago tonight, Little Warrior walked out
the hospital, her regimen done. We even made it home in time for trick-or-treating.

Thanks to the distractions, other than a scary thought here or there, a worry when Little
Warrior complains of a stomach ache, scan-xiety hasn’t set up house in my head. Til
now.

A ministerial colleague sends out a great article on hospice care. Halfway through
reading about someone dying of cancer, I realize: Perhaps I should wait a few days
before reading this. And then the thought: what if in a few days, I need to read this?

It is Halloween tonight. Others are watching slasher flicks, scary movies. The irony is
not lost on me. I am terrified.

I spoke with my father earlier today. He tells me that unless he is told otherwise, he just
assumes all will be well. It is a good philosophy, and I’m glad it works for him. But
my five year old daughter has had cancer twice. I am once-bitten, twice-shy. No, that’s
not correct. Twice-bitten? Oh, I know. “Trick me once, shame on you, trick me twice,
shame on me …”

My life might change tomorrow. My life and the life of everyone who loves Little
Warrior. And obviously, Little Warrior’s life.

But the truth is, every person living might have a life-altering experience tomorrow.
Every day. We are fragile and because we love, the amount of people whose lives impact
us, leaving us vulnerable to those life-altering experiences, is exponential.

I simply have one of those days circled in ink on a calendar.

May today be just another day on the calendar, for all of us, and especially the family of Little Warrior.

Edited to add: At 1:38 pm Dumbledore's facebook status simply stated, "Ned."  Relief unbounded for Little Warrior and her family.




*we call her Dumbledore, because she is just full of great wisdom and we sometimes feel a little Harry Potter like in awe of her.  The important thing is to realize, Dumbledore gets scanxiety too.

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.

Sincerely,

Christy Griffith

www.evegriffith.blogspot.com

http://reddye48.com/

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

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.

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.

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.

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!

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.

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.