Thursday, October 10, 2013

Rant - BMT +44

Important note: I know that many of you read our blog posts out loud to your kids. Today's post might not be the one to read out loud without a little censoring. The Sam update is at the end....he's doing fine today.

I am tired and angry and sad.
And none of those words even begin to convey the hugeness of the reality of how this all makes me feel.

Since Sam's diagnosis last year, I have met and "met" (virtually) hundreds of kids and families in the same situation as ours. Leaving out the kids and families with non-cancer life-threatening diagnoses for the moment, I feel that my world is now full of an uncountable number of families touched in horrible ways by cancer.

September was Childhood Cancer Awareness Month. There were stories, all month, about kids with cancer. (That link takes you to one blog, but there were others that shared stories all month.) But I could share a different child's story every day forever and never tell them all. A friend recently asked me how I felt about reading and sharing all those stories. I have thought a lot about this. In some ways, it is like poking at a wound, to see how it hurts. Yes, I'm living our own story. Yes, I'm telling our story....but it's not the same. I know far too much about cancer diagnoses now. I know which ones are breathtakingly terrifying and which ones are horrifyingly ghastly, and which ones are merely gut-wrenchingly frightening (there aren't any that are sweet or good or even just okay. Even the "good" cancers leave parents gasping with terror). I know the pitfalls and the dangers, I know the wheres and the whys and the hows. I find myself awake in the night imagining and remembering and feeling the pain of the moment of diagnosis, the numbness that filled my limbs with the announcement of relapse, and the way I can only imagine it must feel to hear that there's no hope left. Story after story. Photo after photo of kids in hospital beds, with poles and tubes and oxygen and central line dressings and ID bracelets....kids with hair and kids with bald heads...kids swollen with steroids and fluids, kids skeletal and bruised-looking. Smiles and tears....searching each photo for the face within, the imagining of what this child is really like, how it really is in that hospital room, how they pass the hours and how they spend their time and how they tell their stories.

Maya Thompson, Ronan's mom, wrote a heart-wrenching post last year, entitled "Breaking News: Childhood Cancer is NOT Rainbows and Buckets of Sunshine!" I quote her:
Childhood cancer is NOT happy kids with sweet shiny bald heads and brave smiles. Childhood cancer is NOT something that is given to kids because they are strong enough to handle it. Childhood cancer is NOT sunshine and love. Childhood cancer is scary. Childhood cancer is dark. Childhood cancers ruin families and lives. It is probably one of the most stressful, heart wrenching things in the world.

Sometimes I wonder if we have contributed to the cheery image of childhood cancer. Do we share enough about the heartache, the terror, the worry that we feel each moment of each day? Our story is so full of love and blessings, but oh, how there is pain and sadness, worry, fear, yes, even despair. I have found myself in bare hospital conference rooms where I signed reams of paper filled with information about the ways that these "treatments" will hurt my child and in my own coping way, I cracked jokes with the oncologists through my tears. I signed those documents...I am the one who signed the consent to pour chemicals, terrible, horrible toxic chemicals, into my child's body. I am the one who signed consent to send radiation into his body, radiation so strong and scary that the door between us was six inches thick, radiation that could rob him of his ability to grow, to think, to see. I am the one who handed him over to them over and over again....and at the end of each day, I found myself ridiculously grateful that there were documents to sign.

Because throughout all of this, I have met families for whom there is no hope. Families for whom there are no documents -- no chemo protocols, no standard course of care, no odds at all, not even slim odds. The documents that they are signing are hospice arrangements. The documents that they are signing have no long-term statistics. There is no long-term. One such family is an old friend of Michael's. I don't know Sabrina and her family personally, but we have become friends on Facebook. I know that he knows her well, from his NFTY days. What are the odds that our two families would each have a child named Sam, and that child in each family would have CANCER? And what are the odds that her Sam, their beautiful little boy, would have an inoperable brain tumor....and that the end is very near for him. And even as I sit here in my Sam's hospital room and write these words, they are holding their sweet boy so close....and truthfully, the absolutely bare-to-the-soul truth is that I am beyond sad....I have moved beyond sadness into blinding anger. Anger so consuming that I want to smash windows and throw things. Anger so consuming that I couldn't sleep last night as I imagined smashing my fist down on a desk in the National Institutes of Health and DEMANDING in strident shouting tones that something MUST BE DONE about DYING CHILDREN. I am so consumed with anger that I can hardly breathe as I think of Sam Jeffers and his family.....and my heart simply breaks.

...and then I think of so many others, and all of us in this horrible horrible horrible club. Sam and Sam and Sam (yes, so many Sams) and Cara and Ari and Jonah and Clio and Emma and Cookie and Renae and Sean and Isaac and Leah and Collin and Mia and Zachary and Londyn and Emily and Jackson and Caleb and Nolan and Eric and Katherine and Chloe and Gabriella and Zach and Issy and Aidan and Hannah and Maddie .......the kids who we see in clinic and whose updates I read with my heart in my throat. (And the ones who are no longer with us? Bo and Ian and Jack and Kayleen and Donna and Talia and Tucker and Addison and Mya and Zach and Sophia...and so many more...) And these are just the children that I know. These are just the ones I could name off the top of my head and that isn't even the tip of the iceberg. And I am blinded by my anger about the lists of kids who are terribly affected by this. Kids who will live with the consequences of their parents' signatures for the rest of their lives...signatures that we signed while blinded by the tears of knowing what we were signing....

Today is not the day, but I am going to do something. I have to do something. This cannot be. This cannot stand. We cannot stand idly by while our children are bleeding and dying....I am breathtakingly angry and terrified of the future. Rainbows and shiny buckets of sunshine (and art therapy and walks and treats and fun hats) might be what we give to Sam and to our kids, we sell them the good parts of this so that we don't damage them even more than they already are. But Michael and I? Sabrina and John? And all the other parents and caregivers? We are indelibly marked and scarred and we will never recover. Nothing will ever be the same.
My current Facebook cover photo....
(Stepping down off the soapbox and back into the hospital room....)
They've identified Sam's two bacterium. Two! Yesterday there was only one but another one popped up on further culturing and now we're stuck with a course of vancomycin. It could be worse, of course, but vanc is not a picnic-type-drug. But if all goes well (basically, no more fevers), he'll go home soon....oh, I hope so. He perked up today for the art therapist (hooray) and pointed out to her that it's even more fun to do art because she does the cleanup! (Totally my kid, right?)

A walk in the Healing Garden did both of our souls a little good. There are fewer bugs to check out in the fall but we did see one really good creepy crawly thing as we walked back inside. (See, I'm learning how to be a good mom to a bug-loving child. Sheesh, I hate bugs.)


He so desperately did NOT want me to take his picture.
So here's to a night with no fevers, a night of restful sleep and quiet breathing, a night of hope and prayer and blessing....and hopefully back home before long.

14 comments:

  1. I just want to say: I'm here. I'm listening. With so many others.

    Your fury is entirely justified. I hate that this happens to anyone, at any age, but especially to children. I have no words.

    But I'm grateful for you and for yours, even as I mourn the fact that you have to write them -- that you have to feel any of this -- at all.

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  2. Getting up on a soap box every so often is not a bad thing. The sad part is that our world has so many causes that call for soap box rants. Indeed, you are justified in feeling as you do...and in ranting as you have.

    Like so many others, I'm hoping for a quiet night in the slammer and a quick return home for you and Sam.

    xoxo from NYC.

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  3. We had a "good" cancer. We saw ourselves as visitors on planet cancer. I felt sad for all the other parents - they had to fear their child might die. That wouldn't happen to us. Then just when we were almost at the finish line - inexplicable, unexpected bad news. We caught our breath, we braced for moving forward. Then more inexplicable, unexpected bad news. We moved forward. Then the treatment was just too much, the immunocompromise leading to more than his body could handle.

    We braced ourselves that someday soon we might get that news: time to change our goals.

    That day never came. We were waiting, holding our breath, treasuring the days, knowing the news might come in a week or so - or it might not. Then something unexpected happened. In an instant. And my baby, the love of my life, was gone.

    So I thank you for your rant. And I wish your Sam the best, with all my heart.

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    Replies
    1. I am so sorry, Ellen. Those words don't touch your loss. Just know that another heart breaks at your great, immense loss.

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  4. I dont know what to say except, 'Thanks for writing. Thanks for venting. We are here for you in good times and bad, in difficult and easy. Your fears are real and I have no idea what you re going through. We send our love and prayers to you and your family.

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  5. Believe me when I say, during this whole journey with Sam, it was easy to read between the lines. We all felt the heartbreak and pain along with you. It was spelled out loud and clear. Cancer sucks beyond belief. Cancer in children....we don't even have words to describe how truly horrendous that is.

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  6. Meg and Carl are gearing up for their run in Sam's honor. We've found all sorts of ways to run -- to the barber shop, from school, to swim practice, TO school with a picnic in tow, to Jamba Juice to be picked up by a chase vehicle and driven to school while "eating" breakfast. This morning, on our run, Carl, who does "Tigger Runs" -- bouncing, jumping, zig-zagging, picked up the most awesome "prickly" caterpillar I have ever seen -- brown and black striped, even! Carl carried the poor guy along for almost a mile, dropped him, picked him back up, assured us all he was fine and then tucked him in my pocket (I was on a bike!). Upon arriving at Oak Terrace, the poor guy was gone. I thought Carl would be devastated, but, he simply said, "Maybe he went to visit Sam." Wow. Cool thought. Was Sam's awesome bug a caterpillar?

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  7. You've always blogged from the heart, and you have a perfect right to rant. G-d willing Sam will be one of the blessed survivors. There's a young mother here in Shiloh with a handful of kids who had leukemia over twenty years ago, when she was a toddler.

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  8. My beloved Phyllis, as usual you are so very very right. No parents should have to feel what you feel, or have to do the awful things that must be done. Your love is great and strong and where there is life there is hope and where there is love there is faith and where there is Sam there is you and a million of us with love and prayers and tears. xoxo

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  9. Thank you for this, Phyllis. It's so important and healthy and above all, justified, for us to be angry about this horrible disease touching and taking our kids. And thank you for reminding people that it's so much more than the feel-good moments the public sees. It's about pain and fear and anxiety and loss and a thousand other things.

    I'm really glad Sam is doing well, hope the fevers take a hike, and that he'll be back outta there as soon as possible.

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  10. Hi Phyllis! I was actually just checking out a few of your posts and had a quick question about your blog. I was hoping you could email me back when you get the chance -emilywalsh688 (at) gmail.com- Thanks : )

    Emmy

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  11. Thank you Phyllis for sharing this with us. With every one of your posts I imagine the pain you and Michael are feeling. Your anger, pain and grief as well as your joy are shared by all of us.
    Shabbat Shalom
    Fran

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  12. Rant on, Righteous Mother of a Child with Cancer.
    It's no coincidence that we use a soapbox when we seek
    to cleanse ourselves of the pain and adversity
    that the universe visits upon us.

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  13. This post has been included in  לך לך Lech Lecha "Get Yourself Going" Edition of Havel Havelim.  Please read, share and comment thanks.

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