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Ranting mom on the loose

When your child gets cancer it hits you so tremendously and I know for me it was accompanied with this complete sense of helplessness….what could I do for my child?….nothing….I can't make it go away, I can't make this one better with a kiss and a treat, I can do nothing. Then you start meeting these families and all these amazing children, and you learn the sheer staggering scope of pediatric cancer and you start hearing the numbers of children that are dying, and the children dying start being the ones that you know. And then for me, and many of those I've had the honor to get to know, the question became "Why can't I do anything? Why isn't someone else doing anything? Why are our children being stranded by the government, the pharmaceutical companies, the researchers?" And again, the sense of helplessness threatens to overwhelm.

I worked at finding current statistics on pediatric cancers and they are so hard find. But according to the American Cancer Society there are over 14,000 new cases yearly and an estimate 2500 deaths. According the the National Cancer Institute, a child has a 1 in 240 chance in being diagnosed with cancer by age 20 and there have been tens of thousands of different kinds of cancer diagnosed in children in the past 20 years. Because a disease is considered rare if it occurs in less than 200,000 people annually pediatric cancer falls in that bracket.

Rare. It sure doesn't feel rare to the family watching their child suffer through chemo and radiation treatment, it doesn't feel rare to the child who has poison pumped into their body on a regular basis and it sure doesn't feel rare to a family who has to put their child in a grave because the best there is isn't good enough. Rare sounds great if you're talking about antique plates or a first edition book, but in the world of pediatric cancer, rare means death. Because of the perceived rarity of pediatric cancer doors get shut in the face of pediatric cancer, money doesn't get filtered into finding cures and new treatments the way it does for the "big name" cancers, and our kids don't get pretty ribbons raising awareness of the disease on everything from pantyhose to yougurt.

Friday I went to a meeting with the [url=http://www.fastercure.org]Pediatric Cancer Foundation[/url], a group whose sole mission is to fund research to find cures. Cures to the cancers, no matter how rare, that are killing our kids. I've heard the comment "80% cure rate! That's a major increase in survivorship in pediatric cancer." Yes, it is, that's awesome! So, I want you to mentally picture 10 kids you know….you children, your friends' kids, your neices and nephews….and pick the two that you are willing to let die. Which two are we willing to sacrifice? Because if we stand back and let nothing be done, make no effort to improve the situation, we ARE sacrificing those children.

The [url=http://www.fastercure.org]PCF[/url] is organizing the parents to be the voice that is heard. It's amazing to see the money raised and the work done in the name of breast cancer, colon cancer, prostate cancer because the people who are diagnosed can stand up and be heard. But kids? Who listens to kids? How can we teach them to make their voices loud enough to be noticed when a lot of these kids aren't old enough to say their ABC's yet? That's our job! So, it was so exciting to be in a group where the plan is to make an impact, to reach out and not let the public go unaware. Do you know of a person who hasn't heard of breast cancer? Now, how many have heard of a Wilms Tumor….or Ewings Sarcoma…or Rhabdomyosarcoma? The end goal is to bring the general awareness level to a point where we can't be ignored, our children can't be overlooked any longer.

Locally there is going to be a 5k/1m walk-run event in Fishhawk Ranch Town Square on September 29th. It's an event to raise awareness, to celebrate the courage of the families battling pediatric cancer and to raise money for more research. I've signed up as a chair a committee for this event and if anyone that comes to Peyton's site is interested in being a part of this day, of helping to ensure that there is a future of hope for these kids, please contact the PCF and volunteer or let me know if you'd like to be a committee member (my committee would be great!)

The other big thing we talked about at the [url=http://www.fastercure.org]PCF[/url] meeting was that September is National Childhood Cancer Awareness month. I never knew there was one. Bet you didn't either. That tells you exactly how much media coverage, celebrity endorsement, and government involvement there is in making sure that the NATION is AWARE. Zilch, zero, nada. Our goal is to change all of that.

The One Voice project is what it's called. It's about taking all the individual voices of mothers, fathers, family members, friends and uniting them into a loud resonating voice that says "Hey! We're here and since the cancer isn't going away, neither are we!" It's about organizing the people who want to make a difference so that we can. I, as one person, one voice, can't get much done…..but if the thousands and thousands of people who's lives have been touched by pediatric cancer get involved, we can move mountains! Better yet, we can cure cancer. I know I want THAT t-shirt…I want to wear one that says "I helped cure childhood cancer". The One Voice project has a mission to bring all the people together in a united stand-up to the media, our community, our government and start making pediatric cancers as well known as breast cancer and lung cancer so that people care….so that it doesn't have to be a child of your heart that is struck before you want to do something. So little of the billions of dollars that is granted to the big names like the National Cancer Institute and the American Cancer Society is filtered into the field of pediatric cancer.

In the next weeks, the [url=http://www.fastercure.org]Pediatric Cancer Foundation[/url] is going to be getting this One Voice project up and moving and I will encourage each and every one of you to get involved, whether it's becoming an advocate, writing letters, just staying up to date so that you can share awareness with those around you. It's all vital to making One Voice heard and acknowledged.

Ok. Soapbox put away….rant over.

14 moms from the[url=http://www.childrenscancercenter.org] Children's Cancer Center[/url] got to go out Friday night! And….and….well, we have a rule that, much like Vegas, what happens at the CCC, stays at the CCC. It was fun and much-needed for all of us. Thank you so much to Mary Ann Massolio from the CCC who made the night possible and for encouraging us to go.

I suppose that since it IS Peyton's site, I should update about her now. With a nice big wallop of chemo on Wednesday and the new home schedule of chemo every night and 4 days of steroids under her belt, she could definitely be better. Friday night she didn't sleep at all, she was restless when she did try to sleep and for much of the night she was just up and around the house. She's very pale with the big dark circles under her eyes. She goes to the clinic on Monday for counts and I'd be very surprised if she didn't need some red blood because her lips are pretty colorless and she just looks and acts drained. I suppose it's still radiation effects coming into play with the chemo. My poor baby. She's grumpy, a little more hungry than usual…which means she finally eats like a healthy child would… but not quite to ravenous beast level yet. For some reason when I look at her today, she looks like she's going backwards in treatment….like she should look healthier….but she actually looks worse. Part of that is because she's lost the weight from her last long steroid round and she just doesn't look as healthy when she's all skinny and pale….my ultimate goal — to be told I'm too skinny!

Nathaniel and Rachael start 3 days of chess camp next week. On Tuesday we meet with the Powell family and with Sandy Hardin from the [url=http://www.childrensdreamfund.org]Children's Dream Fund[/url] for the Celebration of Life get together where they present Peyton and Adelaine with their formal wish approval. Fox 13 is also planning to come out and be a part of the event because they found it to be a special story, how our families have become such wonderful friends and that we requested to take our Dream Wish trip together. I'm excited about the Celebration of Life as well as the upcoming trip to [url=http://www.gktw.org/]Give Kids the World[/url].

f.r.o.G…fully relying on God

3 Comments on “Ranting mom on the loose”

  1. #1 karalyn
    on Jul 15th, 2007 at 10:00 am

    Hi Anissa! I just wanted to share with you another way that people can raise awareness for childhood cancer and also help out an organization that does so much for these kids. When my husband and I were married instead of wedding favors we made a donation to Give Kids the World. For our donation we were able to have a brick placed at GKTW. We chose to have the brick placed in honor of Matthew, a little boy who I "met" through his Caring Bridge site and then actually got to meet at his end of radiation party. Matthew received a certificate letting him know that he now had a brick there with his name on it. I had scrolls made up saying something like"In lieu of traditional wedding favors we have made a donation to GKTW" and put the website and Matthew's site as well, explaining who Matthew is and what GKTW does. All the money people spend on wedding favors and where do they usually end up? That's right…the trash.Or left behind on the table.This can be done for a number of organizations, St. Judes will even make the scrolls for you. So all you brides out there, consider this before you purchase 300 guitar picks with your and your groom's name on them.(yes I actually got this at a wedding reception once)Just thought I would share this with you. Give Peyton a huge hug for me! Love, "Angel" Karalyn

  2. #2 Karen
    on Jul 15th, 2007 at 3:53 pm

    Hi Anissa,
    I believe I've said it before, yet if I haven't I'm saying it now!!You do such an awesome job explaining my feelings towards cancer. Thank you for being MY voice. You are gifted. I'm blessed to have met you and your family, under these circumstances. I was bummed that I missed the gathering this past Friday, but look forward to another opportunity to hang out with all the wonderful, strong mothers in the future. We understand many of the worries or wonder of Peyton as a possible side effect from radition, so if you ever want to chat our lines are open. We pray for an uneventful July, as we read and heard that the month of July has had mishaps in the past.
    Our love to you all. Stay strong and believe.
    The Gliddons

  3. #3 Penny Hawkins
    on Jul 15th, 2007 at 5:39 pm

    Just got to say – keep up the good work. If I ever get some time – I would love to be apart of the meetings…. Right now – I am just trying to stay one foot in front of another. It was nice getting out on Friday with all the "cool moms". Thanks for putting together. Give your self a big pat on the back – you deserve it. Take care – and tell Peyton – BLAH BLAH BLAH BLAH….. HEHE or Talk to the Hand!. Penny