Donna's Cancer Story: Relapse 3.0

This is the nineteenth of thirty-one installments of Donna's Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.  Each post will cover one month of Donna's thirty-one months of treatment.

Donna had another set of scans this month that showed  her tumor was back.  Another relapse.  Tears and terror for us, dancing and pumpkins for Donna.  Today's update is hard to write.  We were so hopeful, so needing a break from cancer, so exhausted.  I get so angry at cancer sometimes, it's randomness and brutality, it's tenacity, it's mystery.  I rarely asked this question when Donna was in the midst of treatment, but I do ask it sometimes now:  Why Donna?  Where did it come from? 

We have no idea, nor will we ever. 

Donna reaching higher

There is a total disconnect today between the photos you see and the words you read.  How to reconcile the girl in our photos, our beautiful Donna, with the photos the doctors order, those inside her body?  How, as a parent, do you make sense of what you see in front of you and what the doctors tell you is happening?  I spent so much time wishing and hoping that one day someone would call from Children's and say, "We are so terribly, very sorry, but we made a mistake.  Your daughter is fine.  Our bad." 

This photo was taken at the baptism of Donna's cousin.  It was a beautiful day, a celebration for her third cousin born within six weeks of one another.  The minister baptized a few babies that day and spoke of children and of hope.  He talked about how children are never really ours, that as parents, we are here to steward our children through their early life, but must embrace that they are not ours.  I wept silently as he spoke.  Afterwards, we all went to the Brauhaus on Lincoln for beer, brats, and dancing.  Donna loved the music and Mary Tyler Dad and I were feeling so grateful.  Sigh.  It was such a lovely day. 

Dancing at Milo's baptism

After the news of relapse, there is the business of staging.  Yet again, another series of tests, scans, punctures to determine if the beast had metasticized.  More hospital time, more anesthetia, more terrifying hours spent waiting for the phone to ring, knowing in our bones that the news will be bad.  Our bones did not deceive us.  Two small spots on Donna's spine, an area the cancer had never been before.  Our oncologist sounded disheartened, something you never want to detect in the voice of your daughter's oncologist. 

Donna's neurosurgeon was reluctant to operate both because of the location of the tumor (same place, though growing in a different direction, too close to vital blood flow paths) and her stated belief, "There is not a surgical solution to this tumor."  Coming off July's relapse, just three month's prior, we were living so large, truly believing Donna had dodged a bullet.  We had had a taste of normalcy and now it would be gone again.  The treatment decision was chemo, though which protocol was still uncertain.  The sledgehammer of chemos had only stalled Donna's cancer, not stopped it, and in that process had caused damage to her kidneys.  What else was left to try?  At the end of this month, we were still waiting for that answer.

And through this, Donna was in another course of PT.  Seeing her dance and some of her physical limitations, Donna could not run or jump, I had asked for a booster of PT to increase the strength she did have.  Donna loved her therapists at RIC and they her.  The therapy was welcome as it provided structure to our days, indoor fun, and always gave Donna challenge and confidence.  Here she is working on balance as she throws frogs into a bucket I held.  I was so proud of her. 

Donna playing in PT

Donna was as she had always been during this month:  a joy.  A beautiful, smart, clever, girl.  We did not share this news with her.  We discussed and explained procedures with her, worked hard so that she would feel aware, secure and prepared for whatever cancer would bring her that day, whether it be a surgery, MRI, a needle stick, or blood transfusion, but never talked big picture with her.  She was three.  I am forever grateful that we were spared the difficult conversations children just a few years older would have needed.  Again, Donna had no fear or context of what cancer meant or did. 

This photo was taken just two days after the news of relapse.  I was growing bigger with Mary Tyler Son and scared out of my mind for both my children.  And there is Donna, looking at me with such tender love and affection.  She is unfazed by her cancer.  She is happy, she is loved, she is secure.  Cancer could ravage her brain and body, but it could not ravage the love between us.  It could not touch our love.   

Donna and Mama

Tomorrow:  Chemo 2.0

 

Comments

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  • Sigh. I wish I had the right words to say.

  • Donna is amazing. You are amazing. That last paragraph and picture just broke me down into a weeping mess of tears. You are sharing such a beautiful treasure and I am so thankful to have the chance to meet your beautiful little girl.

  • My heart is breaking as I read your insightful words. Thank you for sharing your journey, although it is a journey no family should have to take. The pictures of Donna happy are so sweet and beautiful. They add so much to your story.

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    This story takes your breath away... Im speechless... I wish the best for you in life.. Donna was an amazing kid! My heart hurts for you...

  • Just wanted to let you know that my daughter and I are still following along. :)
    I read in the mornings when I get to work, and share it again with her before bed-- she is absolutely enthralled by Donna's story. (She thinks she's *so* cute.) My daughter is 7 and lost her grandmother (my mom) to cancer earlier this year, suddenly. She was possibly a larger part of her life than I was at the time, but my daughter never seemed to understand the loss. I think she only cried once, and then kind of went on about her life, while I was devastated. I probably could have learned something from her. ... But after reading Donna's story, I think she is beginning to understand it.. Heavy stuff for a kid, but sh*t happens, right? She makes comments sometimes after we read that completely floor me. She gets it. She's awesome.
    So, thank you for sharing Donna's story. And no matter how it ends, I think you are one lucky momma. To have had Donna in your life, for even for such a short time, (for me, at least) would be worth the pain of losing her. Rock on, MTM. We'll be here til the end.

  • In reply to MommaMeg:

    You may want to read and share with your daughter the book, Lifetimes, The beautiful way to explain death to children by Bryan Mellonie and Robert Ingpen. It was enormously enlightening and comforting to me, a grandma, as well as children to whom I have read it.

  • I never met her (and for that I am truly sorry) but I absolutely love her. I love the ballet class story (ours begged to go at that age and then was too scared to go in. Donna was so brave and smart!) and I love the joy on her face and I love the way she is looking at you in that last photo. Love her.
    I do think, also, that there is something special about kids who experience medical hardships early on. Jack was so young - he has no idea he has had a transplant - but he has remarkable empathy and an appreciation for the little joys in life. I recognize him in stories about Donna. I read your posts and keep thinking that you and I should go to coffee sometime. But then I think - but not to talk hospital mom stuff. Who the heck wants to talk about that?! ;)

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    Mary Tyler Mom & Dad! As I sit hear reading yalls blog tears stream down my face as I feel mad at myself thinking my life has its ups and downs. i.e. Money, work, kids, normal every day life, when your family has been thrown into all the fears that us parents feel and you still have the everytday worries on top of your heads. I feel like I know you , dad and Donna now. I send you my happy thoughts and prayers and thank you for sharing your life with all of us out here. Love that baby for she is so precious. :-)

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    Donna's story is the only blog I've ever made a point to log in and read every single day. Her smile in these pictures is beautiful, and you can see all over her little face what a good heart she has. Thank you for sharing your family's story and for sharing Donna with all of us.

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    What a girl! What a mama! Here every day to share the journey.

  • Thank you so much for introducing us to your Donna! I have been reading her story everyday... smiling, crying, falling in love with her. The love between you in this picture is overwhelming. You summed it up perfectly in your last few sentences... "It could not touch our love"... how beautiful and so very true.

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