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What started out as a site to update on our daughter's cancer has thankfully grown into a site to update on our beautiful family of four. Enjoy our journey...

Thursday, September 10, 2009

Childhood Cancer Awareness Day ~ 09-12-09

Charli in her 1st chemo hat...

September is Childhood Cancer Awareness Month, more specifically the 12th is childhood cancer awareness DAY. I will not be around my computer much Saturday, so I wanted to post this ahead of time.

Having a child with cancer is not something you “get over” or “move past”, it is something in your blood – and something you breathe everyday for the rest of your life.

All of you know by now that Charli had cancer, I don’t need to go down that road for everyone again. What you may not know is how it can affect a person, two years down the road. Childhood Cancer Awareness is so important, so that there are fewer parents like me…and more parents like you who just hear stories of kids like Charli. It is important to me that you are not only aware of childhood cancer, but also help spread that awareness so we can raise money to put a stop to it.

Let me just share a little story with everyone, that only about three people know about…

A month ago we decided to finally take Charli to the eye doctor because of some excessive blinking she has been doing. I assumed it was allergies, but we started to worry that it could mean a problem with her vision. We took her in, and sure enough she needed glasses…she is near-sided with astigmatism. (on a side note she is doing great with them and already knows how to put them on and take them off without touching the lenses!)

After a concerned email from a loved one we looked a little further into the excessive blinking and Neuroblastoma…it was devastating. Many times excessive blinking can be a sign of relapse in the brain, often misdiagnosed as something minor. I did research and spoke with several parents – some with horror stories, and others with happy endings. Most of the time when things come up that make us question her health I can easily dismiss the fear. This time…I couldn’t shake it. I had an unbelievable fear that just as we were welcoming a new life into our family…we were going to have to fight for Charli’s again – that “ironic” twist happens far to often, to many I know. I cannot even begin to explain how it made me feel - completely nauseous, panicky, and overwhelmed to the point I couldn’t hold a complete thought in my head!

We called her oncologist in Omaha and because she is scheduled to return for scans in a few weeks they said they were comfortable assessing her at that time. I was told that it was very good that we kept a close eye on all of her neurological development and anything that seemed out of the ordinary. I have found piece with her answer to me, and we will “sit tight” until our next appointment. I have found calmness in knowing that she is okay and it is just a fluke…not a relapse. But it made me think.

If Charli were to relapse - - - I can’t even let my mind go there. Not only is it too painful, but it is too overwhelming.

I share this story because it is important that people know what “our” life is like now. When I say “our” I don’t mean Chad, Charli, Harper, and I…I mean any parent of a cancer survivor and warrior. We are not allowed to look at any typical child behavior or action as typical…we always have to analyze if it could be more…that isn’t fair. Ha…none of it is!

I feel so helpless this year as this day/month rolls around. I feel like there is so much I should be and could be doing to promote the day and raise awareness. Honestly…those who are reading this now already are aware. We rely on YOU to help us at this point!! If you have a blog…just mention a quick blub about childhood cancer awareness – and if all you have is 30 seconds to do that, post a link to this site. Send an email of this post, anything you can do to inform or remind others. Informing 10 more people about this world can do wonders.

Last night in the President’s speech he talked about Kennedy’s two children with cancer and made mention to some of the choices parents have to face when they do not have heath coverage for their family. I don’t know what the right healthcare reform plan is or should be…but I do know that kids have died because of a lack of coverage – adults too. BUT, I also know that any steps we take backwards will be 100% time worse than staying as we are.

Before this turns into a complete ramble I will end! I just feel like I have so much to say and I can’t find the words to say it…I am thankful we have this “day” as much as I wish we didn’t have to have it. I know that there are some incredible parents out there doing amazing things this month to help the families and kids with cancer – and I am in complete awe of what they are doing! I am humbled by their friendships and inspired by their dedication.

*just a reminder of some of the facts*

Childhood cancers are the #1 disease killer of children - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.

Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.

Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.

Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.

The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).

One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.

On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.

While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.

Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.

Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.

Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.


Natalie said...

I am reposting my "Charli" link now! :)

Know that I have been thinking about your guys alot lately...and really wish that I could say something supportive, but just don't have the words...hopefully just being here for you when you need me is helpful. WE LOVE YOU CHARLI!!

Grma and Grmpa Preister said...

God bless you & keep you, Brenda, Chad, Charli and Harper. Thank you for reminding us all to pray for a cure and show it in our actions. There is not a day that goes by that I don't pray for Charli and thank God for her healing...she is a are a blessing! XXXXOOOO (Kisses and hugs for each of you!)

Rachelle said...

Brenda - what an amazing post. I'm sorry you had to go through something so scary again and thankful that Charli is okay. Your efforts at raising awareness about childhood cancer are awesome. Keep up the good work - I will always keep Charli and all of you in my prayers.

P.S. I am going to post a link to your blog on my facebook page.

Anonymous said...

Brenda you are always amazing!
I will of course post this to my facebook page. I will say a prayer for Charli's upcoming scans...and for your peace of mind.
Jen Calahan

The Currie Family said...

Keeping you guys in my prayers, please keep us posted.

How are Landon and Courtney?? I think about them often.

I will have to link your blog up to my email for donations (running for Wipe out Kid's cancer on saturday).

Anonymous said...

What a great post. The facts are scary and very real. What you've done for awareness is just amazing. You have no idea how much strength I find through being your friend. Hugs and Lots of Love--

The Hudcaps said...

God bless your family!! You guys are such champions for the cause. That pic of Charli gave me a tear!!