Monday, September 19, 2011

This is what childhood cancer looks like...




I'm sorry if this picture is too sad for you to look at. Imagine how I feel...this is my child. Imagine how he feels. The treatment is doing this to him and we have no choice. This is his only shot at life. No baby should have to go through this...ever...and I'm mad. I'm mad because I didn't know, and neither does most of America. Here are the facts about childhood cancer.

  •  Every school day 46 children are diagnosed with cancer.
  • Sadly, over 2,300 children with cancer die each year.
  • 1 in 330 children will have the disease by age 20.
  • Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
  • Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.
  • 80% of children have metastasized cancer at the time of their diagnosis. At diagnosis, only 20% of adults with cancer show evidence that the disease has spread or metastasized.
  • Detecting childhood cancers at an early stage, when the disease would react more favorably to treatment, is extremely difficult.
  • Cancer symptoms in children – fever, swollen glands, anemia, bruises and infection – are often suspected to be, and at the early stages are treated as, other childhood illnesses.
  • Even with insurance coverage, a family will have out-of pocket expenses of about $40,000 per year, not including travel.
  • Treatment can continue for several years, depending on the type of cancer and the type of therapy given.
  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
  • The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
  • The American Cancer Society spends less than 70 cents of each 100 dollars raised on childhood cancer.
What Causes Childhood Cancer?
  • Every family is potentially at risk.
  • In almost all cases, childhood cancers arise from non-inherited mutations (or changes) in the genes of growing cells.
  • As these errors occur randomly and unpredictably, there is currently no effective way to predict or prevent them.
  • Most adult cancers result from lifestyle factors such as smoking, diet, occupational hazards and exposure to other cancer causing agents.
Cancer Research Funding
  • Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
  • Pediatric AIDS receives 4x the funding that childhood cancer receives.
  • In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.
Most drugs used for childhood cancer treatment are over 20 years old and were developed to treat adult cancers.

Cancer treatment can cause serious side effects that often last a lifetime.

These kids need effective, less toxic treatments. They need a cure. So, why is childhood cancer so grossly underfunded? Are the kids just too sad to think about? Do they not have a voice?

I used to see the St. Jude kids on the TV...or I heard stories of a friend of a friend who's child had cancer. I gave money here and there, but why didn't I do more? I didn't know...I didn't think it could happen to my child. Well it can, and it did. So please, do something without it slapping you in the face too. Use Nate's pain and the pain of every other child fighting with all their might, as your motivation. I know most of the people reading this are now aware...go out and make your friends aware too. Many of these children are too little to ask for help. They need our support and our dollars, so they can have a chance to grow up and live the life they were meant to live.

Nate is not doing well. Every time we think we're starting to turn a corner, we aren't. He's keeping water down, but not much else. As you can see, he's probably lost all the weight he worked so hard to put on...I'm too scared to weigh him. He barely has enough energy to lift his head or talk. We called the on call Dr this weekend and were assured that this is fairly normal. As long as he's keeping fluids down, he's doing ok. We have an appointment at the clinic in the morning. We'll see what they say when they see him. Chris and I are not doing well either. We're mentally and physically exhausted. I'm having some major stomach problems...maybe it's sympathy pains. Please pray for us. Please pray that Nate will start doing better soon, so we can have a bit of a break before they hit him with round 4. Please pray that Chris and I can continue to stay strong and positive. I think we are doing a pretty good job, especially around the kids, but it's not easy.

28 comments:

  1. Beth, we've never met, but I work with Chris. I wanted to let you know that my husband and I are praying for Nate and the rest of your beautiful family, and have passed on the request to our family, friends, and church. God bless, Christina & Joel

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  2. Love and positive energy to all of you. Especially sweet Nate.

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  3. Beth,
    My heart breaks for you and your darling family.
    Please know you all are in my thoughts and prayers.

    Connie Eschinger (Anne Schneider's Mom )

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  4. Beth,

    We have never met but I have been following the story of Super Nate. It absolutely breaks my heart and as a mother I cannot even fathom your world right now.

    You, Nate, your whole family, are in my constant thoughts and prayers.

    I cannot send enough love your way.

    Katie Zimmermann (Anne Schneider's sister)

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  5. I thought for sure he'd be feeling a little better by now. :( Sending extra love and positivity right now. xoxo

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  6. Oh, Bethany, that picture says so much, seeing him there with his teddy. This is not how a two-year-old boy should be spending his days. I'm so, so sorry you guys are going through this, and I wish there was a way to make it all go away.

    This round of chemo has been so tough! I really hope he feels stronger soon.

    Thanks for the eye-opening statistics. I had no idea how underfunded childhood cancer research is. :(

    On a related note, Chili's is doing a fundraiser with St. Jude's this month, where kids can color a picture to hang in the restaurant, in exchange for a donation. Jack and Thomas colored a couple and wrote "For Nate" on them, and we told the waitress about him. :)

    We love you guys!!!

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  7. I came to your blog today thanks to the link on Maya's page. Just wanted you to know that I am sending love and prayers your way.
    Farrah

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  8. Thanks for posting. The statistics are maddening. I had no idea until Nate started this fight how it was for these kids. It makes me angry. His picture breaks my heart. I hope clinic goes well and he starts feeling better and gets his weight back on. Love you Super Nate!

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  9. Praying for you. Every day. I am so sorry your little sweetheart has to go through this. Thank you Maya for directing us here.

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  10. Praying for you and your sweet family. This horrible world fails us every day, but the Lord never will. xoxoxo

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  11. Sending hugs and prayers your way. Hope the appointment goes well today

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  12. Poor baby, this is just horribly unfair and it just breaks my heart that he is going through this. We are keeping Super Nate and your whole family in our prayers. Also working on spreading AWARENESS and donating to CureSearch. So very important for children to have less toxic treatments that are developed FOR CHILDREN and not adults.

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  13. The picture of Nate broke my heart. It is just so unfair. In fact, FAIR should not even be a word or concept allowed in the universe until CHILDHOOD CANCER is GONE from this world we live in.

    You all, especially sweet SUPER NATE are in my thoughts and prayers.

    Love, Melissa (One of Maya's Mafia)

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  14. Cheryl Moyer-RaffertySeptember 20, 2011 at 8:50 AM

    That was my daughter now 8 1/2 last year. She has endured every horrific side effect to chemotherapy for a garden variety leukemia. She is still in treatment and the nausea was quelled by arm bands on her wrists, Zofran and Ativan. Ativan worked like a charm. Ginger helps some kids too. Like there is day and then night, pain and suffering and then wholeness, vomiting and then eating.... he will get through it all and so will you. He will eat and regain his strength...I remember the bottom... mouth sores that burned her to her bottom and 33% loss of body weight and artificial nutrition. You would never know it in this moment the horror she went through. Praying for you all through Maya's Mafia. He is truly blessed.

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  15. I am from Brazil, mom of a 1 year old girl and I am praying for Nate and your family. I got here through maya's blog. I'll keep you and your family in my prayers.

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  16. Praying for peace and strength for you and your hubby. Praying for super Nate!!!

    Glenda
    One of Maya's Mafia

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  17. I know how exhausting dealing with a long term illness can be, but not as it relates to cancer. Can not even imgaine what you must be going through on a daily bases.

    You're right, no child deserves cancer. They're so sweet and thank God so strong.

    You are a wonderful mother for sharing Nate's story and educating the rest of us on how little is being done as it relates to research and medical options for fighting childhood cancers. For that, thank you. It won't be in vein, I'll help pass the word and will keep Nate and your family in my prayers.

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  18. Bethany - I think you have so many people wishing they could just wrap their arms around your whole family and let you how deeply we care and love you. I hope that you truly feel that love and care as you are walking through this. My prayer today is that you would feel God holding you in the palm of His hand and holding Nate there, securely, and comforting all of you in the deepest possible way. I keep imagining something deep inside Nate just FIGHTING this thing and kicking it to the ground even as it changes his appearance on the outside. He is fighting and you are taking SUCH incredibly great care of him. You and Chris are handling this unimaginable ordeal with such strength and honesty. Nate surely feels your deep love for him. I hope you can all find moments of peace and hope in this day. We are praying continually and thinking of you constantly. Love, Kris

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  19. I am praying for you and for your husband and for little Nate with all my heart!!! xoxo

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  20. I am sitting here trying to muster up something to say, to write and encourage you. All I can do is cry for your sweet family! My heart breaks for you and the pain you are all going though! We will add you and your to our prayer for sure but what else can I do? How can we help? How can we get involved?
    Much love and prayers being sent your way!

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  21. My prayers are with Nate and your family. He's a precious child. Much love to your family.

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  22. You, Nate, and your family are in our thoughts.

    With love,
    Mary Waters (Jason Waters' wife)

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  23. Hi I'm a childhood friend of Allison(smith) mead and I'm so glad she posted this. I have MS I go thru 3-4 relapses a year where I'm bedridden or hospitalized. The pain is immense complicated by nauseating medications and temporary loss of ability to walk to grip to balance and to remember simple things. I lose strength because I vomit up anything I even look at. But here's something I tried I recalled the BRAT diet I used to feed my kids when they had the flu. So for 4days all I ate were small but frequent servings of banana rice Apple sauce or toast along with cups of ice chips. I stopped vomiting and regained some strength. Every hour I ate 1/2 piece of toast or 1/2 cup rice, etc. Try this with Nate. My prayers are with you.

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  24. This is just heart breaking. I am sending all of my positive energy your way and hoping that Nate starts to feel better soon. I have 4 kids, and can't imagine what you must be dealing with every waking and sleeping moment of the day. I will keep sending all of my positive energy your way.

    ~Janis

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  25. Beth!

    I have been following Nate's story and i could not even begin to imagine what you go thru each day! I have a son (step son) but we have been a family for well over 11 yrs, he has had lukemia twice, once when he was about your Nate's age and then again when he was five! My Nate is now 20 yrs old and stands at 6ft 7 inchs! Sending all my thoughts and prayers your way and that Nate will thrive and get better! I'm sending all the strength from my Nate to your Nate and that one day he grows into a srapping young man. Sending you all my strength as a parent to help both you and Chris stay strong for the whole family!

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  26. Heartbreaking. My thoughts are with you, little Nate and your family.

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  27. Our families best wishes to you and your family. We will include you in our thoughts and prayers continuously. We pray for you to continue to have the strength to stay positive and to see positive results. We will also pray for your family to have comfort.

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  28. I am so, so sorry. You are in our prayers. This is so heartbreaking to look at. I will pray for strength and healing for your little angel.

    love,

    Sara M.

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