Are you ready for some fundraising?

I am.  Zach’s Toy Chest volunteers are.  Now we just need you to show up and make our 2^nd Annual Cruizin’ for Childhood Cancer Motorcycle Ride & Community Fun Day a huge success! 

Do you need your blood pressure of glucose checked for free?  We can do that for you courtesy of Martin General Hospital.  Want your picture taken by a professional photographer?  Show up and have Jamie Butler snap your mug.  Craving a snow cone?  Deep South Shaved Ice will be on hand just for you.  Missing the taste of the beach?  Come get fresh seafood from Ashbella Seafood Company.  There will also be live music going all day performed by some of Eastern NC’s finest.  Jamie Bryant, Ed Corey, Laci Wagner and The Shakedown will be performing along with legendary DJ Keith Manning from BOCO DJ & Karaoke.  Whatever you are in the mood for, we’ve got you covered.

Last year we had 70 bikes.  I would love to see twice as many this year.  We’ve got the perfect set up weather wise (sunny and 86 degrees) so there is no excuse not to come out and celebrate…unless you are one of the poor souls in school until 1pm.  You get to join the festivities after the school bell rings.

Here is a run down of who is singing and when.

8:30AM - DJ starts
10:15 - Jamie Bryant
11:00 - Ed Corey
12 Noon - Dick Feyer
1:00 - The Shakedown

There will be loads of family fun for all ages to enjoy.  We’ve got a bouncy house that is only $2 to jump all day.  Face painting for $1.  Zach’s Toy Chest merchandise for sale.  Hot dog/BBQ sandwich plates for $5.  Plates include a hot dog or BBQ sandwich, chips, cookie and drink.  What a bargain.  You’ll also be able to buy items separately if you’d like to do so. 

The fun begins at 8:30AM and lasts all day until 4PM at the Williamston Piggly Wiggly parking lot.  (

712 Washington Street, Williamston, NC  27892

)

Get yourself down to Williamston and help us raise awareness for childhood cancer and raise money for ZTC so we can keep providing the local hospitals with toys and other essential items for kids getting their cancer treatments. 

No such thing as an average day.

So I woke up and it was a looking like the beginnings of a blah average day.  Then Zach grabbed my face to give me a kiss goodbye at school and complemented my new haircut.  He’s been telling me how much he likes it since Adam told him I had it done.  That one thing from Zach was enough to make the day better already. 

Then I got home and was flipping through the newest Woman’s Day (September issue) and my day got even better.  I came across an article about a mom whose kid had neuroblastoma and she started a non profit that raises money for research.  I did a double take.  This kind of article isn’t something you come across often unfortunately.  Great job Woman’s Day for highlighting a disease that is rare, but takes the lives of more kids each year than more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.  It is a start.  More advertising/articles need to be written to inform the public of childhood cancer. 

In fact, I’ve convinced the local paper back home to do an article each week in September featuring a different local family that has been affected by childhood cancer.  Another small victory for the bald kids. 

Zach is getting to be a regular comedian these days too.  He was showing me his ‘magic wands’ from school (which are un-sharpened pencils) and how he could do this and that with them.  I asked what was on them and he told me dinosaurs and dogs – but not cats ‘cause cats are weird.  This observation is based on him seeing the cats at the pet store jump around in the cages and fall on their heads.  He doesn’t see why any animal would do that – so they are indeed weird. 

He’s also been really into reading his Bible.  We were in Walmart about a 2 years ago and this man came up to Zach and offered him a small pocket Bible and $5.  Ever since then he carries it around with him and will ‘read’ out of it.  What’s really funny is when he’s trying to sell you on something he’ll go and get the Bible and flip it open to a page and point to a spot and say, “See right here?  It says ….whatever he wants it to say to prove his point.”  We’ve been reading stories out of his kids Bible and he’s really into pointing out things God made while we ride anywhere. 

So God made the trees, the clouds, the rain, the sky, those swans and mean gooses and …..Smurfs!  That’s a new one.  The little blue people have been a collection item at his school for the last 2 weeks.  There was a competition between his class and another class of which class could collect the most Smurfs.  The other class won – but only because that pre-k teacher cheated.  Seriously.  She went to McDonald’s and just bought all the different Smurfs they had.  So now the losing class, aka Zach’s class, gets to be painted blue.  Thanks a lot lady.  All the parents should send the kids to her to clean up all that paint – that will teach her to not cheat pre-k’ers again.

There hasn’t been any blue paint yet.  Maybe they will forget about that part of the competition.  If not, I promise to take pictures of my blue child.  Turned out not to be such an average day after all.

The case of the NED.

I'm more than a little late writing this, but now is better than never.  Right?  Zach just wrapped up his 3 year cancer check and we are in the clear!  August will mark his official 3 year mark since we first heard those magic words, "Zach is NED".  Such sweet words.  Better than winning the lottery.  We are planning a superhero party for Zach now.  I think all kids that battle cancer should be considered superheros, so why not have a party and do it up right?  Any excuse to get together and have fun - count me in.


We've been busy bees working on delivering toys and gearing up for our 2nd Annual Cruizin' for Childhood Cancer Motorcycle Ride and Community Fun Day. 


The event will be held September 10^th from 8:30am – 4pm.  There will be live music, vendors, face painting, a bouncy house, lunch and raffles.  This year we are having live music performed by Jamie Leigh Bryant, Dick Feyer, The Shakedown and BOCO DJ & Karoke.  We also will have Martin General Hospital performing free blood pressure and glucose checks along with other vendors. 


There will be BBQ sandwhich plates selling for $5/plate.  Plates include a BBQ sandwich, chips, drink and dessert.  How can you not have fun with all that? 

We would also like to extend an invitation for your business/organization/church to have a booth at the event.  The vendor fee this year is $15 with a small donation of your product to be put in the drawing for a door prize.  All vendor fees, waivers and door prizes must be turned in by September 1st.

Event address:

712 Washington Street

Williamston, NC 27892-2648

For more information on Zach’s Toy Chest please view our website or Facebook page.

www.zachstoychest.org

www.facebook.com/zachstoychest

Please contact Event Coordinators Faye Leggett 252-799-16976 or Brandy Edwards 252-792-6420 if you have any questions about the event or would like to participate as a sponsor, vendor or volunteer.

Come out to the event, have fun, raise awareness for childhood cancer and money for Zach's Toy Chest so we can continue to supply the local clinics with toys and other essential items the kids need to survive the long days of treatment.  Be part of the coolest crew around.  Just do it.  Do it for the bald kids and any other slogans that will motivate you to take part this year.

What's going on?

I’m sitting down to write this because I just read the most recent report from CureSearch and the Children’s Oncology Group (COG).  While I’m not surprised by some of the details, I am crushed that the government did move forward with budget cuts for research.  We did what we could by advocating in March up on Capitol Hill, but it wasn’t enough.  This year's federal budget cuts to the COG will total nearly 10%.  The impact on this severe of a cut will be devastating and trickle down to affect all of us.  We needed more research; with at the very least to continue with the same amount as we have currently.  The last thing we needed was a cut in any amount.   What this means are the resources needed to advance children's cancer research will come largely from private fundraising. 

I’m so thankful that there is a CureSearch.  They are doing all they can to create new fundraisers throughout the year to continue to raise money for research and a cure to end childhood cancer.  Click here for more information on events coming up and find out how to participate.  This leads me to the part of the report that did not surprise me, but makes me frustrated and angry.  Per the report, the NIH (National Institute of Health) announced that while the survival rate for children's cancer has steadily increased in recent years, the number of children being diagnosed has continued to increase, too. As we search for a cure, we must also understand why the number of children with cancer is on the rise and what can be done to reverse this trend. 

I think we all knew this was happening, but aren’t sure how we can fix the problem.  I’m standing high on my soapbox as I write this – RESEARCH IS THE KEY!  Obviously our federal government is not going to be able to help us.  We are going to have to roll up our sleeves and do it ourselves. 

For childhood cancer to be ‘rare’ there sure is a lot of it around these parts.  I have met several families here in the Triangle area that are affected by childhood cancer.  Out of these families, more than 10 are affected by neuroblastoma.  Suddenly it’s seems not so rare.  I am getting pissed off that the people in the decision making seats cannot seem to connect the dots.  I can work my behind off to raise money for more research, but we need people in positions of power and authority to back our cause and create more awareness.  We need more famous people backing childhood cancer as their cause instead of some 3^rd world country somewhere.  I know other causes aren’t less important, but it is my child that was sick, so to me there is nothing more important.  We need more advertising to create public awareness. 

I might take a hit for this, but I’m going ahead anyway.  Everyone knows how to check for breast cancer and how to raise money for research for Susan G. Komen.  How many people know about childhood cancer?  That there are over 12 kinds of childhood cancer and when money is raised for childhood cancer it has to be spread out over all of them?  Money has to go much further than people realize.

 Kids are our future and without research and funding for clinical trials and such, what kind of future do we have?  I would LOVE to take the money from Susan G. Komen’s legal team and apply it to childhood cancer research.  It makes me sick to my stomach to think of them literally wasting good money that was raised for research and use it to throw around lawsuit after lawsuit for other groups simply using the phrase ‘for the cure’ or using the color pink in any fundraising capacity. 

I’m not one to normally feel helpless, but having gone through this fight and gotten my battle scars, I did feel helpless.  It is a hard thing to sit and watch someone you love, kid or adult, go through cancer.  What can we do so we aren’t helpless in the future?  How can we make the future better for our kids and for the ones that aren’t diagnosed yet? 

I didn’t want to continue to feel helpless so we started Zach’s Toy Chest.  We saw a need for the here and now.  The kids are getting treatment now and they needed something to help pass the time.  That’s where we come in and hopefully make their day better.  Better for the parent or guardian that is there with the child and better for the child.  Most of our toys go to the Valvano Day Hospital at Duke Children’s Hospital in Durham and the East Carolina University Hematology-Oncology Clinic in Greenville.  Both are out-patient clinics that see kids every week day and in Duke’s case, the weekend as well to deliver cancer related treatments.  But we aren’t stopping there.  Our time at Duke has taken us to each floor of the Children’s Hospital and we see different needs for each area. 

There is a very nice lady in radiology and nuclear medicine that is always so pleasant to us and Zach.  She gives him crayons/paper, matchbox cars and beanie babies each time we are there.  So now we take similar items to her for other kids in that section.  We have also spent more than our fair share of time in the pediatric recovery area.  This is where you have to go when your kid needs sedation of any kind for tests/scans/etc.  They only have VCR’s and VHS tapes here.  Do you know how fast you have to be to rewind a tape for a kid that has no patience?  There isn’t a fast enough.  So we’re planning on upgrading all the triage rooms of this area with new DVD/VCR players and DVD’s too.  This way they can utilize what they have (tapes) along with newer DVD’s.  I’m brainstorming about a gaming station (PS2/Wii/Xbox) as well for this area. 

We are busy with our raffle right now and gearing up for our 2^nd Giving Grill at Whole Foods in Cary in two weeks.  Saturday, May 21^st from Noon-6pm I will be out with volunteers handing out plates of BBQ or vegetarian meals and talking about ZTC.  There will also be beer from local NC vendors being sampled.  How’s that for a good day!  I will keep updating the website and blog with our events and what we are up to these days.  Thanks for supporting us!

Sayonara cancer!

Zach is all set up for his LAST EVER SCANS!  Back when we were first told Zach had cancer, this day wasn't even on my radar.  It didn't exist since we were getting by one lab/scan/chemo treatment at a time.  Well, on June 20, 21 and 22...the days will be here!

June 20th - appointment with Dr. Barfield/physical - find out where we go from here
June 21st - Labs and MIBG injection
June 22nd - CT and MIBG scans

The 22nd is when I will have my hands full.  An MIBG scan requires that Zach lay absolutely still for over 1 1/2 hours.  No shrugging shoulders or sneezing or anything.  Sedation is our only option for this scan since it is so long.  I'm not looking forward to this.  Each time he's been sedated (which is so many I've lost count) he has a harder and harder time while on the medications and then coming off the meds.  I hate that part.  It's like my sweet little boy is turned into this aggressive and mean terror.  Not his fault, but its so hard to watch and comfort him.  Hopefully this will be the time they will get the right combo of drugs to work for us and there will be no 'T-Rex Zach' in sight.

I'm willing to put Zach through this again without as much angst, because I know this will be it.  The last scan.  This will be the last confirmation we'll get and then I guess we'll do lab work yearly or so.  Wow.  Can't think of anything else to say about it right now.  As it gets closer, I'll be eating more Tums and having my moments, but for now, I'm ecstatic to think that we are separating ourselves from neuroblastoma and everything bad that goes with it.  Sayonara cancer!

Big Z really is getting big...he's turning 4!

This is from Zach's Caringbridge page: 

WOW – I can’t believe I haven’t had to update this page since Christmas.  Incredible feat for our family and I couldn’t be happier.  This update has nothing to do with any check ups or scans or anything else that makes us have long days at Duke.  Get this.  Zach. Is. Turning. 4. (April 11^th to be exact!).  This is HUGE!  For Zach, for me, hell…for the whole family!  Our whole family was part of Zach’s treatment and without them; we would have come out of this looking a lot rougher than we did.

I’m in awe of how fast time has flown and the satisfying fact that we are celebrating his 4^th birthday is not lost on me.  I go through this each year since his 1^st birthday was ruined (in my eyes) by cancer and chemo.  I would love to have a huge tail party with a pig and the whole nine yards, but I just started work again and can’t swing that just yet.  Maybe later.  This Saturday there will be a T-rex cake, ice cream and hot dogs…and Zach will be happy.  And that is all I can ask for. 

A couple of weeks ago Zach, Mama and I went to DC to bring awareness to childhood cancer and speak to Congressional members from our state about maintain funding for fiscal year 2011 and increase it for 2012, co-sponsoring both the Creating Hope and Survivorship Acts, and joining the Congressional Pediatric Cancer Caucus.  We made an impact.  At this point in time, I’ve gotten written confirmation that Congressman G.K. Butterfield has signed on to maintain funding for this year and give 32 billion to the National Institute of Health (NIH).  He has also joined the Survivorship Act, which will conduct research on survivors and all the nasty side effects that come later in life from our kids being treated with adult cancer drugs.

Let me break this down for you, because until I was in DC receiving my training, I didn’t know this stuff.  The NIH will spread that money out to different groups such as the National Cancer Institute (NCI).   The NCI then doles out different amounts of money to different cancer types.  For next year we are hoping for more than the 4% we have currently.  This money is spent doing research and other stuff “they” deem necessary.  Still not sure who “they” actually are. 

I am thrilled that we were able to go and advocate on behalf of our kids.  And people with cancer in general – kids and adults.  Cancer is spreading like the wildfires that have started this Spring and it shows no signs of slowing down.  The best way to slow the fire down, or completely stop it, is to do research.  We need research.  Simple concept.  Let’s get it through our Senators and Congressmen’s heads that cancer research is not as they called it, discretionary spending.

  You can help spread this message right now, from the comfort of your desk chair.  Look up your Senator and Congressional members for your state/district and email them.  Tell them your personal story of how cancer has affected you and your life and then tell them to do the following:

1. Maintain funding for fiscal year 2011 and increase it for 2012
2. Co-sponsor both the Creating Hope and Survivorship Acts
3. Join the Congressional Pediatric Cancer Caucus (if they are not Senators!  Senators are not allowed to join caucuses).

Hope this didn’t sound too preachy, but I want everyone to know exactly what they can do to make a difference.  So now you know.

Hello? Do you hear me up the Hill?!

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.  You should really check out Christy's blog, Eve VS Wilms - it's crazy good.  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!