The following is a speech I delivered last week at a Casino Night fundraiser for CureSearch. I had to face my fear of public speaking head on, but the message is bigger and more important than my fear. As you read this, you can pretend you were there if you just imagine Eve running across the stage and leaping off, in between pulling on my arm saying, "Mommy! Mommmmmmmy!" You can get away with a lot, apparently, if you have some cool scars.
I was invited to speak by Sammy Keziah, father to Sam, who lost his life to Wilms four years ago. I appreciate him having us and not getting upset while Eve and Daniel played American Galdiators while he was speaking.
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. His name was Sam.
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