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!