relapsed

I want to help. I want to change. I want to heal.

I am selfish most of the time. Most of the time I hurt just for me. For us. For our loss. For our pain.

..but Unravel.

We didn’t name it after Jennifer. We didn’t make it specifically a DIPG or even brain tumor research foundation. (although we certainly fund it) I have always known why. Always known it was because its bigger and more than just her. But today sitting outside of Starbucks is when my heart absorbed the reason.

His name is Juan David. Just two and a half. Infant ALL. .. oh well ALL thats a “good one” right? Thats a easy one right? Well as sweet Elayna taught us there is no such thing as easy or good. The treatments are always brutal.. And infant ALL.. is actually not good. The percentages aren’t in their favor..

And as with childhood cancers that aren’t terminal upon diagnosis, relapse is horrible. And he has relapsed. They are presented with 2 options.. Try. One last effort that might help .. or might not..  Or go home. Make memories.. Faced with two undesirable choices.. Come back to the hospital and keep clawing at the scrapes of hope or keep him home.

How do you decide that?

DIPG is horrible in its own right. To have no real hope. To be told your child has cancer and they will die from it… 9 months average. Its unthinkable. But at least I knew. At least we could be preparing for the unpreparable.

Hours before we knew.. I took this picture just because..Actually I think I took it just to share on FB... No idea it would be my last photo of her that we didn't know. ..
Hours before we knew.. I took this picture just because..Actually I think I took it just to share on FB… No idea it would be my last photo of her that we didn’t know. .. My last “mom” photo.. Before that title became “cancer mom”.

For families given hope, given cure rates. Time to try. To be cured. To be a winner.. Then have it rise up again. And then such limited options. .. How do you decide? Because these treatments aren’t easy. This mom changed his diapers as baby with gloves on .. because her skin had to be protected from the chemical being pumped inside her son.. He had a catheter at times.. Because his urine was so toxic he couldn’t have it in a diaper touching his skin.

He was 12 weeks at diagnosis. He is now two and a half. All his life he has been fighting for the ability to live. ..

How do you decide the fight is too much? How does a parent decide that?

I don’t know.

Right now in this moment, if you aren’t “one of us” you are so grateful aren’t you? you simply can’t imagine it being you .. and you are so grateful.. Its ok. .. I would be too.

This boy. .. well this boy and his mom and Dad and 2 older sisters. They got to me. They reached my heart today. A part I had subconsciously (I think) guarded so carefully. .. They were the final blow today to break down the gate.. To allow  them all in. To become part of me.

. .. I know the moment it happened.  When she said he was diagnosed 2 days after we lost our Jennifer. That she remembered holding him.. hurting for us. So grateful for her healthy kids..

Then 2 days later. .. Your baby has leukemia ..

Sitting on the ground outside of Starbucks with Bridgette between my legs and toys strewn all around.. In a sentence I was changed.

It finally really hit me.

They were the finisher for the work that Elayna and Robyn and Ty and Sawyer and Wyatt and Aanya and Isaac and Marin and Colby and.. too many others have started on me. To penetrate to the core of me..

I have supplied the fuel to keep me going in the fight to Unravel pediatric cancer..  Jennifer was the start of it. The catalyst. My selfishness and want to protect my surviving kids pushed the pedal. .. But most of the time I have been running on fumes. ..

Ego and refusal to quit keeping me going. ..The incredible team that is truly Unravel keeping us all moving forward..

But me .. my role .. I was just able to put in a few bucks at a time to keep the engine running.. Always teetering on breaking down on the side of the road..  the red needle constantly jusssttt above empty.

2 days after my baby died she told me… She had just been kissing her babies.. Grateful. Valentines Day. I could almost touch my memories of that day, she could too. I was suffering a seemingly insurmountable level of pain and she had the rug  pulled out from underneath her..

A friend made us a nice meal.. Jonathan came home from preschool with a giant Valentines day card from preschool
A friend made us a nice meal.. Jonathan came home from preschool with a giant Valentines day card..
..and we made public plans for our public goodbye to our 6 year old.
..and we shared the plans for our public goodbye to our 6 year old.

We made plans not too long ago to meet up. So my kids could meet a surviving child. So they could see not all kids die from cancer. Motivation for what we are doing with Unravel making a difference. .. we never did meet up .. Until today.

thank you sissy.. today was the right dayDSC_0165

 So many of those kids are relapses.  These chemicals so toxic they can kill the cancer cells. .. so toxic they make your hair fall out and can burn your skin. .. They also change the environment that the cancer lives.. They change the cancer itself. It is rarely the exact same as it was when it started.. Thats a pretty logical thing to figure out right..but..

The cancer isn’t the same. yet the treatments are.

Relapse for most childhood cancers equals what I call the kitchen sink treatment.. You just throw everything at it. .. Everything that might work at initial diagnosis. . But you aren’t fighting the same beast anymore. The make up of it has changed.

We need research for that. .. But we barely have enough research for the primary cases.. So these parents that have been fighting. That were told they had won the fight, are now thrust back in the battlefield with a arsenal of barely useful weaponry.

I don’t even know what I am saying right now..

I am full. I am on fire. I am changed.

I am relapsed. 

Everyday I am a pediatric cancer survivor. Because I am surviving what it has done to me. To my family. Cancer changed me.. changed my biology somehow.

And today I relapsed.

Its a different beast now. .. its bigger. Its stronger. Its scary. Because its all of these kids. My body. My heart. I think my soul. It was finally able to absorb it.. or stop fighting it.

These kids. .. the ones diagnosed.. the ones lost.. the ones still fighting and especially the ones that will get their oncologist tomorrow. . They are in me. They are coming out of my pores. And the new found drive and determination they are giving me is powerful and toxic. ..

finally huh?

you’ve wanted this for me all along

haven’t you?

DSC_0782

..until there is a cure..

 

 

 

13 Responses to “relapsed”

  1. Libby,
    Look up hope for Parker on Facebook. Just look what they have done. There is hope let’s keep the fight going. I don’t know if he’ll be the first survivor of the dreaded dipg, but THERE IS HOPE. Let’s look at relapse treatments maybe we can find one that gives more hope! We’ll keep praying for Juan David, Elayna, Jennifer’s sweet friend Emily, Dillon, Cannon and so many more. But find the rays of hope because they are there! Everyday I say the same prayer I said for Jennifer for these kids. Heal them it’s not to hard just heal them please!

    1. I think you might have misunderstood the posting.. I know how much hope there is.. I have always known it but never felt it. Until yesterday. I feel renewed and empowered. And yes I know Parkers family.

  2. I just want to kiss Jennifer’s chubby little cheeks and I’m sure you do too!! Many thoughts!

    LOVE4JLK

    Janeel

  3. Amazing and empowering, Libby. We are excited to flutter and host our lemonade stand, anything to stand beside you in this. We won’t stop until there is a cure. Thank you for inspiring me!

  4. Relapsed.. “The disease is back”. Those were the word’s we were told. Still ring in my ears, probably always will.

    Together we can all make a difference. Glad to be part of the team.

  5. Wow Libby ! You have shown strength your whole life…I remember Laura saying how she loved your parenting style…. And I caught glimpses of that seeing Jennifer and Nicholas and Jonathan spinning and dancing at Friday night music. But this – I can feel the power and fortitude pour out of you and grabbing — new and ever stronger direction !! –

  6. Such a powerful post, I feel your new resolve.

    I just finished a half marathon in Seattle and had Lily (from lilystrong) on my jersey and heart.
    I’m shifting my focus to child cancer awareness and fundraising for it.

    Much love and hugs.

  7. I am reading your blog as I am getting ready to Go visit Marjorie At Sutter Health Hospital in Sacramento. She was diagnosed with Leukemia at only 6 months old. Her 3rd birthday is next month… She is in God’s hands now!

  8. You are a force…the energy you create is honestly endless…as you find ways to control it…you will be unstoppable and I hope you kick cancer to the curb.

  9. I feel your resolve, too. And it brings my own bubbling up to the surface. Thank you, Libby, for continuing to put your emotions into words… for continuing to stoke this fire in all of us.

  10. You are a force to be reckoned with Libby! You continue to amaze me! Love to you all. We love you Jennifer! ♡♡♡♡♡♡

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