Party now, sleep later.

Party hard with your kids, while you can.

Drink coffee in the morning.

Repeat.

Skip a bath if it means you get to snuggle down a little longer with that dirty child.

Take a moment to appreciate their energy. Drink some coffee and try acting like that yourself.

Make time to eat crap food together.

Repeat for the moms who don't get to do this anymore.

Are you caffeinated yet? Are you ready to hike? Are you looking for a challenge? Think about joining the Ultimate Hike to benefit CureSearch.

Train now, sleep later.

Holly Takes on Washington

Holly Schwab is mom to Zach, neuroblastoma survivor. She runs Zach's Toy Chest, which provides new toys to kids in the hospital. This year, Holly and Zach stormed Washington. You can follow her family at Holly's World.

So I decided to take Zach to Washington DC for our first Childhood Cancer Awareness and Advocacy Day last week. Boy did I underestimate what I was in for. First off I was completely caught off guard with my emotions when I arrived at the information session on Wednesday. For some reason I thought the group of parents participating would have their kids with them - I was wrong.

Our family seemed to be in the minority because Zach had survived his battle with cancer. Good thing I had packed my tissues, because after listening to several speakers talk about their kids who had passed and why they were doing what they do now, it was tough to hear. Then I thought about what a wuss I was sitting there crying when I still had my kid 3 doors down playing with the 1 or 2 other small survivors that had come to DC. It was time for me to suck it up and pay attention to the detailed statistics the speakers were telling us.

Stats such as pediatric cancer research being considered a "discretionary program". Say what? Since when did finding a cure for cancer become optional? Maybe if their kids had cancer they would see it differently - but that isn't something I'd wish on my worst enemy(if I had one).

We reviewed 4 main reasons as to why we were in Washington:

1. To ask our Senators and Congressional members to maintain funding or fiscal year 2011 and to increase funding in 2012. We asked this because each year 13,500 kids are told they have cancer and more than 40,000 kids undergo treatment for cancer each year. There are more scary facts that we laid out to our representatives too. The impact of not maintaining for 2011 and increasing for 2012 is that kids with cancer will not have the best treatment options and will suffer from the lack of research.

2. For our Congress members to join the Congressional Pediatric Cancer Caucus and be a Congressional champion for legislation benefiting children with cancer. All Congressional members need to be part of this caucus since it is bipartisan, creates awareness and educates our members. If we as parents to a child with cancer didn't know this information, how do we expect Congress to - unless we tell them?

3. We need Congress to cosponsor the Creating Hope Act to encourage drug development for pediatric cancers and other rare pediatric diseases. This legislation has bipartisan support and does not require an appropriation. This Act was introduced the morning we hit Capital Hill and there was no better timing. This Act doesn't require any money from taxpayers - at all! What it does do is generate market incentive for drug development through a "golden ticket" - a priority review voucher for pediatric rare diseases. Under this program, a company that develops a drug for pediatric cancer and receives FDA approval for that drug also receives a voucher. That voucher comes with rights to a faster FDA approval for any other drug (like another heartburn or allergy medication), which results in the drug getting to market 4 months earlier. These vouchers are worth hundreds of millions of dollars...I think that may be the incentive these drug companies need to help our kids. Whatever works people! I happen to think this is an ingenious idea and wish I'd thought of it myself.

4. We also asked for Congress to cosponsor and adopt the "Childhood Survivorship Research and Quality of Life Act" formerly HR2109, which is scheduled to be re-introduced later this year. This one is a biggie because now that Zach has survived childhood cancer, he faces many late side effects. 3 out of 5 kids who survive cancer suffer horrible late effects such as secondary cancers, muscular difficulties, infertility, heart failure, kidney damage, hearing loss, memory loss, permanent low immune systems, develop autoimmune diseases and a host of many, many more. As a direct result of research done up to this point, we've got loads of kids surviving each day. This means we need research done to help the survivors. Right now we're at a standstill - I've survived cancer...now what? We need to figure out "what" and allow our kids to grow old and change our diapers when we're as old as...I don't want to think about what that age might be.

Thursday morning came and as I found myself to be nervous...no time for that - got to get my big girl panties on and get this show on the road! We rush to get to the hotel in time to make the shuttle (which we make only by seconds and have to ask them to hold it while I go park and run through the parking garage like a mad woman with an empty stroller. Zach and Mama got put out on the curb so they wouldn't break a sweat.) We arrive at Capitol Hill and start our hike to the first meeting of the day. We heard a 12 year old boy do a speech about how he survived cancer 2 years earlier and was here to help us sway our Representatives to see our point of view. This kid was amazing. No other words.

We move on to our first Senator meeting with Richard Burr's office. This meeting was so weird. It didn't really seem to have a 'start'. The aid we met with, Jennifer Nardi, met us and just sort of looked at me to begin...and I choked. Had no idea where to start. Where was that lady in our group who said she'd start and end for us in the meetings? She was late, that's where she was. I managed to get through a jumbled start and thankfully another set of parents picked up the message for me and we were able to get all our points on the table. I got the impression Jennifer Nardi was not interested in our group or our message. However, we made her sit there and listen anyway. The other family in the pic is Christy Griffith, Eve and husband Matt. Eve had a different cancer and was treated with the same chemo drugs as Zach, as was a older survivor of leukemia (29 years survived!)...see the need for more research yet?

Then we were off to a good lunch of chicken strips, fries and cheese pizza. Those were some good chicken strips - worth all that walking back and forth all day! We went to Congressman G.K.Butterfield next and met with his aid, Meredith Morgan. She was full of energy and I felt like we really had her attention in this meeting. She took notes and even asked questions we were able to answer. Made me feel a bit smarter up on the Hill.

*Update* Meredith sent an email letting me know Congressman Butterfield was on our side.

'I really enjoyed meeting you all today. Thank you for taking the time to come all the way up to DC.

I passed the information on to Tonya, our chief of staff, regarding what we discussed and she is going to review it tonight. Also, I read your children’s stories and I am so sorry. I can only imagine how difficult that is to go through for everyone involved.

I know our office is behind funding the best cure for pediatric cancer. The one piece of news I already have is that we are in support of funding NIH at the current level. We just signed a letter today in support of funding NIH at $32 billion (the President’s proposed FY 2011 was at 32 billion but as I am sure you know ,there has been no final vote for FY2011 by congress. FY2010 for the NIG was 31 billion) .

Please know that our door is always open.'

I have since written her back reiterating our message and thanking her for the support.

After this meeting, we had some time to kill so we took our time getting to Senator Kay Hagan's office. I took some random pictures during this walk...

What's the 1st thing you notice in this picture??? We were lucky enough to be stopped twice that day for the President coming and going down the street...whoever this guy stops wouldn't be what I call lucky.

I really took notice of all these damn stairs around Capitol Hill...maybe it was because I had a kid in a stroller to lug around all day...what do handicapped people do here? I finally found a ramp at one building at guess what...it lead me to the base of some steps.

This certainly explains a lot about people in Washington...

Zach's new friend and partner in crime, Eve.

So we arrive at our last meeting of the day, Kay Hagan's office, and we're prepared to deliver our message to Senator Hagan...but she is a no show (she had to run home to NC). We ended up meeting with a competent aid named, Tracy Zvenyach - who is also a nurse and had a great working knowledge of what we were talking about. Another Mom that was there brought an email from Senator Hagan's office to attention and promptly told the aid that the letter was wrong - all the info Senator Hagan wrote about was for adult cancer - not childhood cancer. We hope the Senator has been informed of the error and will now cosponsor our Acts so she'll be more informed in the future.

We were very fortunate to have an adult survivor of leukemia. She has survived 29 years and actually had been treated with the same drug Zach was, as well as Eve - and they all had different types of cancer. She shed TONS of light on why research is needed for the survivors too.

The kids were wild by 5pm. This poor girl looks like she was ready to make a break for it when we left! At the end of the day I think we really made an impact on Capitol Hill - for better or worse, we made one. I ask that each and every one of you write to your representatives and ask them to maintain the budget for the rest of this year and to increase it for next year. We need the research. Simple as that. I'll update about responses I receive as they (hopefully) come in. Thanks for your support and encouragement. We need it!

It's Not All About You.

I remember it like it was yesterday. Husband, myself and our parents were sitting outside of surgery while my daughter was having her Wilms tumor removed. My mom said something so simple to me that sparked my response, I still think about today when I see others struggling with that very question.

Mom - "Why did this happen to you? I just don't understand."
Me - "I'm not sure, but I haven't even thought about the reason yet. Maybe her resected tumor will be a link in research to the cure. Maybe her brother will grow up hating cancer or seeing children sick, and become a great scientist or wonderful oncologist. Maybe I will meet another cancer parent and create something to help millions and go down in history. I'm not sure why, but I feel it's not about me."

Sure, you can beat yourself up over what you did to cause this cancer in your child, but let's face some facts. The causes of childhood cancers are largely unknown. There are some genetic abnormalities or syndromes and radiation exposures that make up a very small percentage of known causes. Possible risk factors are suspected, but scientist have yet to identify specific environmental factors because of the variables associated with lifestyles and coordinates and such. We need more research. Awareness, research and money.

Through funding, be it on a government or private level, compassionate people gather, money is raised, families are involved and ideas are hatched. And these little ideas to create a foundation to raise money for research or grant wishes for children diagnosed with a life threatening disease or even give families a place to call home while their child is being treated at the local hospital become the world around us.

Heroes. They are everywhere, wearing street clothes and loving the world. They make the world a better place. They fill my heart with love and peace and I understand what compels them to do these great things. I get it. I would do anything to ease another's journey.

This post was inspired by Kim Hill, and the birth of the Ronald McDonald Houses. This is not the first or only league of amazing humans, nor will this be the last time we talk about inspiring folks that walk, ride, bake or raise the benevolence bar, but it was sparked by Kim Hill's recent passing.

In her death, we are reminded again, that the childhood cancer douchelord must be overthrown.

Reading an article about Kim Hill's death, I came across a statement Kim made in 1982 that sums up my sentiments:

"I didn't enjoy being sick, but if I wasn't sick, all of this might not have happened." 
                                                                                                                              -Kim Hill

Maybe you are looking for your "why" behind your journey. Maybe you'll find it, maybe you won't. Remind yourself to take it one day at a time. Hug the people you love. Just get busy living. Raise awareness. Collect money for the cure. Volunteer. Love more. Use the force and change the world.

The Advocate

Your kid has cancer.

Your resume now includes oncologist, radiologist, and pharmacist in addition to chef, chauffeur, and maid. Well, I've got one more to add to your CV:

ADVOCATE.

Unfortunately, we're the only ones who are going to be the advocates our children need. It might not be something you would have chosen, but it's something that has now chosen you.

March 16-17 marks Children’s Cancer Awareness and Advocacy Day. March 16th is a day full of training so you know just how to attack. March 17th, you are let loose on Congress to demand funding for the research to fight the disease that kills more children than any other disease combined.

Eve and I went last year and we plan to return to hold those accountable for failing to do the right thing. Are you coming?

All the cool kids are doing it.

I walk because I look good in cross-trainers.

There are lots of reasons to walk.

(I ate too much Taco Bell.)
(I have an unnatural need to exercise.)
(I walk because I'll have an asthma attack if I run.)

I want you to find the closest CureSearch Walk near you and...run, don't walk, to sign up.

Walk in person. Walk virtually. Walk however you need to walk to let the world know how awesome you are for supporting children's cancer research. Don't hold your breath waiting for someone else to raise money, because that shade of blue just ain't good on anyone.

Just a friendly reminder from your neighborhood power walker.

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.