Dawn the advocate?

I’m sick to my stomach right now.  I absolutely HATE cancer.  Shit, doesn’t everyone?  No…not the way I do, not the way any “cancer mom” does, I can assure you.  More specifically, I HATE Irinotecan, the oral chemotherapy drug adminstered at home.  Why on God’s greeen earth any doctor would give you the most discusting tasting medicine on this planet, tell you mix it with too many MLs of juice and FIGHT and hold your child down to get them to take it, I do not know.  The other way to get this drug into her is through her port, which would require a five day admission to the hospital, which means time spent away from home for Elena and myself, time spent away from Daddy and Annalise, time with too many doctors and too many nurses and not enough understanding as to why.  I’m desperately trying to keep her away from the hospital through this as much as I possibly can.  And yet, moving forward with this drug (the next cycle is 6 weeks away), I have to weigh the options and try my damndest to figure out which is the bigger demon; week long hospital stay, or practically abusing my child to get her to take this drug at home.

I am seriously considering having a close (would have to be very very very close) friend or family member video tape our next attempt at administering the Irinotecan. “Why would you DO that?!?!?!”  “Are you CRAZY?!?!” “No one wants to SEE that!!!”

Yeah, I know.  And yet, perhaps the world needs to see MORE of it.  Seeing sick, bald children on TV commercials has not been enough to make the federal government consider increasing the percentage of funds given to research childhood cancer.  4%.  Four lousy fucking percent of the governement’s cancer research budget goes to childhood cancers.  There are 12 major types of childhood cancers, and dividing four percent among them means that each different type gets crap in the way of research money.  Two months ago, it didn’t phase me.  I had no idea that there was such little funding.  I had no idea that it has been 20 years since a new cancer treatment drug for children has been made.  I had no idea the struggle, and the pain, and the fear that parents of children with cancer face.  Until it happened to my child.  This is also part of the problem…the awareness just isn’t there.  More adults are diagnosed with cancer than children, so you hear more about that.  I know at least 10 people who have been affected by cancer (in an adult family member).  I never knew anyone that had or knew a child with cancer.  And I’m not saying that I think adult forms of cancer should be overlooked…but let me tell you, I would face any type of cancer 100 times if it meant my baby wouldn’t have to.  No child should have to go through what Elena is going through, and no parent should have to face what my husband and I are dealing with.

If you know me, you know that I am so far from the advocate type.  I tend to consider myself a realist…I don’t really believe that ONE person can make that big of a difference.  But I have never wanted to TRY more than I do now.  I’ve never wanted to stand on a soap box and scream at the top of my lungs for change more than I do today.

People tell me that it’s a blessing that Elena is so young, that she won’t ever remember any of this.  Which, for the most part I think is true.  I doubt she will have specific memories of these times.  Though I fear she will have impressions of these awful moments.  For now, she shakes it off after we’re done giving her the medicine and within a minute she’s happy and laughing and just thrilled it’s all over with.  Will that continue as she developes more and becomes more aware?  Will the number of times this drug is repeated leave the impression of fear in her?  It takes me every ounce of strength to not break down and cry in front of my kids.   Cry tears of frustration and anger that this is what our life is now.  Tears of joy that Elena comes and gives me a hug to comfort her after.  Tears of the most gut wrenching heart ache you could ever imagine.  Tears of fear.  Those all come later once the girls are in bed, or sneaking into the bathroom away from prying eyes for a minute or two.  Of the worst tears I shed are those for the realization that our lives, and Elena’s life will never be the same again.  That’s soap box worthy if you ask me.

 

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5 thoughts on “Dawn the advocate?

  1. keep writing & venting to the world. you may think that your voice is small but its a strong one. I can assure you that there are hundreds of thousands of moms who are going through the same thing you are & are afraid to let the world see their reality. You are a strong beautiful woman, start saying your own mantra every morning and throughout the day looking at yourself in the mirror & know how amazing you truly are.
    love you xo

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  2. Dawn,
    I have been reading your posts
    And my heart goes out to you and
    Your family. It is absolutely absurd
    To me that there have been no
    Breakthrough drugs for childhood
    Cancer. I feel your pain and frustration.
    Besides new drugs and treatments
    I can’t believe knowone has come
    Up with at least a non repulsive
    Taste for the medicines. Maybe
    You don’t have to be a doctor to
    Figure out how to make the medicine
    At least not taste horrible. I encourage
    You to keep trying everything you can
    Think of so that you do not have to
    Take elena to hospital to receive
    Treatments. Maybe you can be the
    One that saves other parents the
    Daily pain and suffering of just
    Trying to get meds in your sick
    Child. I pray for your strength
    To continue to be positive and
    Strong during such a trying time.
    I know you are in the heat of a
    Brutal battle that seems like it
    Will have no end. When we face
    These trials in life we face our
    Worst fears and it is hard to look
    Ahead with any certainty. But
    As an outsider not living your
    Pain. I will look ahead for you.
    I see Elena as a beautiful young
    Lady sitting on the beach on LBI.
    Texting her friends on her iPhone
    And posting pictures on facebook.
    Mom and Dad enjoying every minute
    Of life knowing they fought and won
    The most important battle of there
    Lives. Keep the faith let all the emotions
    Come out and try to vision that young
    Lady on the beach several years from
    Texting her best friend her mother.
    God bless,
    Vinnie

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  3. I am also a cancer mom. My son was diagnosed with rhabdo at age 17. He is now 20 & just got married. I can so relate to the things you have written. I’ll be sending prayers for your sweet Elena & for your entire family from Tennessee. Take it day by day Mom. There is an end to the insanity of what you are dealing with right now. Blessings to you & your family.

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  4. I’m sorry to learn that your family is on this journey. Please know you’re not alone in snarkiness.

    Just came across this entry and I wish I would have known about it months ago.

    My son had irinotecan in clinic through his port. I insisted on going home after. If it can be administered at home, then it can be recovered from at home. That’s how I see it.

    I do hate to sound like a b!€<@ but sometimes as a cancer mom, you have to put your foot down. Insist on irinotecan in clinic. And insist on going home after.

    I wish you and your family the best on this journey.

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    • Thanks Jodi! We actually started the Irin through her port in December and were able to keep it through clinic. One of the best decisions I have made through all of this as orally was a nightmare. Thank you for commenting!!

      Like

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