Donna's Cancer Story: Choosing Hope

This is the thirtieth 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.

Cancerville is full of subdivisions and part of the deal when you are relocated there is you have to live in the right one, depending on what's happening with your treatment.  Among them are Relapse Valley, Chemotown, Transplant Meadows, Infection Ridge, Remission Viejo, and Secondary Cancer Estates.  Off in the distance, on opposite sides of the tracks, are Grieving Heights and Survivors Glen.  Survivors Glen has the best zip code, but as in every desired neighborhood, there is not room enough for everybody.  Within Survivors Glen is a small pocket called Scarred Acres, full of children finished with their treatment, but marked in a hundred different ways by their cancer.  Some will live in Scarred Acres the rest of their lives.

Our family knew the move to Grieving Heights was on the horizon, but we weren't ready to pack just yet.  There was a beautiful surrealness to this month.  It felt normal.  Normal is something you crave when you live in Cancerville.  I was doing dishes one day, one of the chores I had missed with all our supportive family around to take care of the details, when I was rinsing out an empty ice tea bottle.  I unscrewed the cap and noticed words on its underside:  "Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree."  (Martin Luther)

It's crazy how the words on a discarded bottle cap can change your life, but these did mine.  That they were spoken by the architect of the Protestant Reformation is simply ironic bonus.  They stuck with me for days, Luther's words, popping in and out of the precious moments with Donna spent doing the most mundane things.  An ordinary life, full of park visits, and naps, and errands, and simple dinners was a haven to us.  Every single thing in those days felt innordinately brillaint and beautiful and fleeting.

As the words marinated in my thoughts, I began to see the connection between them and our mantra throughout treatment to 'choose hope.'  I wrote about it at the time:

"When all of this began so long ago and I first typed the  words 'choose hope,' my guess is that most folks assumed the hope was for Donna's cure.  If I'm honest with myself, it probably was for a time, but as much as that mantra is for Donna, it was for me as well.  To remind myself that hope comes in many forms and, more importantly, it is a frame of mind, a choice one makes.  For so long, and to this day, it is the only way to live.  Without hope, how would I wake up in the morning?  Without hope, how do you continue to be with Donna, laughing and playing and so brightful, knowing that she will be gone much too damn soon? 

As much as I hoped for a healthy Donna, there were other things I hoped, and still hope for.  Hope to get through the day.  Hope that there will be another day with Donna.  Hope to find the joy in life.  Hope to not become bitter or angry.

Hope to find a way to live with the cancer in our lives without it overtaking our lives.  Hope to adopt a child, knowing that Donna would not be able to carry one herself due to treatment and to provide her with the knowledge that familes are made in all different ways.  Hope that when Donna was uncomfortable or in pain, that it would be transitory and she would bounce back.  Hope that [Mary Tyler Dad] and I would remain strong together. 

Hope that Donna would find the world a lovely, beautiful, wondrous place - - a place she wanted to stick around in.  Hope that the docs would stumble upon something that somehow hadn't cured the kids that had come and gone before Donna.  Hope that our lives would find their way back to normal, even if that looked different.  Hope that if Donna did die, [Mary Tyler Dad] and I would somehow survive.  Hope that [Mary Tyler Son] would not be burdened by our grief.  Hope that joy will always be with us.  Hope that we will not be alone. 

The hopes change and continue to evolve, as they should.  At the base of all of them, though, is that we, this family, whatever that may look like, will somehow survive.  Some of the choices we've made along the way have pointed to this.  Buying the larger home two years ago; pursuing the fancy pants pre-school for Donna, a place we felt could nurture her smarts and spunk; welcoming [Mary Tyler Son], or 'Little Fatty Chumpkin,' as Miss D calls him; enrolling Donna in dance class and pursuing it despite relapse after relapse after relapse. 

These have all been choices, conscious and deliberate choices, made in the face of cancer. These are our apple trees.  And my latest hope is that these trees will sustain us when our world does go to pieces.  That these trees will feed us and shade us and shelter us from the inevitable storms that will be."

Stylish Donna 

In that vein, as Donna's most desired apple tree, we sent her to pre-school.  More than any other thing, Donna wanted to go to school.  Good Lord, if there was ever a child that walked this earth that was built for school, it was Donna.  Mary Tyler Dad and I plotted and fretted and steeled ourselves for how the staff that had so hopefully accepted Donna the previous winter would react to our decision.

Turns out, with loving and open arms.  We met with Donna's three teachers and the school RN and the Admission Director and devised a plan.  We discussed how other children might react and concerns their parents might have.  We came to the meeting holding a letter from Dr. Stew, explaining why Donna physiologically was not able to be toilet trained (Stew would have done anything for Donna, even enable her with the one place she could and did exert her control.  "I am too young to sit on a toilet," she told us time and time again.)

Donna painting

It's hard to grasp and capture the suspended nature of those weeks Donna was in school.  I felt like such a Mom.  A happy mom, a loving mom, a busy mom, a SAHM.  The reason why I was staying at home was immaterial.  For those brief weeks of Donna thriving despite the beast growing inside her, having its way with her under our helpless watch, I got to be the mother of two.  I took Cancer Mom's cape off and got to be simply, Mom. 

In these days, our neighbors, Chabad Lubavitch Jews, encouraged us to travel to Queens, New York with Donna, where the leader of the Hasidic movement was buried.  They believed that his burial place had healing powers and thousands travelled there daily and were cured from illnesses as critical as Donna's.  If we were not to travel, they encouraged us to send a prayer via email and it would be placed at the Rebbe's grave. 

We are not religious, Mary Tyler Dad and I, but I embrace the belief that no one truly knows what is and is not in our world, or what happens after we leave this world.  Each day as Donna would nap, I would type the same message to the Rebbe and think about it as it made it's way to Queens, was printed, folded, and placed next to the Rebbe's grave:  "May she live until she die."  That was my wish for Donna.  I did not ask for her healing or a postponement of her inevitable death, I humbly asked the Universe to allow Donna to live until she died.  No suffering.  No pain.  No lingering.  May she live until she die, was my mother's plea, my last wish for my dying daughter. 

Mama Hugging Donna

Tomorrow:  The End

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  • I am weeping again but I, too, have planted my apple trees. After three miscarriages, when I got that + sign on the pregnancy test, I bought yarn and started knitting a baby blanket and hoped. (That baby turned 10 this month; her birthday is a week after 9/11 - Hope again)

  • Oh MTM,

    Those gold sandals, those beautifully polished toenails....this vital, vital girl who shone in school and shone in life - there is no end to her vitality.

    I am so very glad you got to be Mom to Two, outside of the shadow of bastard cancer.

  • I'm so glad that Donna got to go to school.

    Thank you for sharing your story and Donna's.

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    Thank you for sharing your beautiful Donna, as well as your whole family. I find it hard to find the words to express what I am feeling, and what I have been feeling these last 30 days. Just know that I (as well as thousands of others) are grateful to you for sharing your story. Thank you from the bottom of my heart.

  • Oh! Those red shoes. Those little arms. Donna, I miss you! I can't even begin to fathom how your own mother feels.

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    Oh how I love your Donna but eventhough I knew it was coming, I'm not ready for tomorrow's post!

  • I so completely understand your prayer. It was the same one I used when my mom was dying of breast cancer. It worked as she was able to truly live until a few weeks before she died. As hard as it is to read your blogs, I so look forward to learning more about Donna. She has to be one of the most amazing people I've ever met.

  • Thank you for sharing Donna with all of us. I cry every day when I read your post. What a beautiful little girl Donna is

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    MTM there will not be a dry eye tomorrow anywhere in the world tomorrow for us readers following your family's heart wrenching story about your lil angel' will to survive Donna. Please just know that when the posts end and the comments start to fade away YOU have accomplished the awareness that you set out to do. I believe we fell in love with a beautiful little girl and a family that the majority of us has never met. A lot of us have had to internalize fears that could "never happen to us". Thank you for letting us in and most of all, thank you for teaching us that we as a community can do so much more. I'm not overly religious but I know that Donna is watching over your family. I don't say this phrase enough but I mean it from the bottom of my heart, BLESS YOU!

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    Oh, MTM, reading this site brings back so many memories. My best friend died of cancer (rhabdomyosarcoma) in 2006, when we were turning fifteen. Nobody told her that she was dying, but I am sure she knew. She was desperate to start high school, and wanted me in as many of her classes as possible. There was no way she would make it there, but I coordinated my classes to be with her anyway. She died on the 28th of August and never walked through the doors of our high school. Sad. But I am glad she was given the chance to believe it.

    You are so brave for publishing this, and it means a lot to many, many people, even those who have never met you or your family. Donna was a beautiful child, and I am glad that she touched your lives. Even now, she is touching ours.

  • You have blessed SO MANY people with your story. Donna has blessed so many children by making us all better mothers. I love that my girls always want to wear red shoes, and I let them. LOVE LOVE LOVE it more after this story!. Girl, you have a writing skill and a mother skill that most of us need/love to hear. Keep writing...we will keep following. HUGS....HUGE HUGS...YOU ARE WONDERFUL.

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    MTM

    Still here. Still reading. Falling more in love with Donna with each typed word. It can never be said enough what an amazing little girl she was, but what an amazing little family she was so very fortunate to have around her.

    I stand in awe ... the spiritual type of awe ... at all you accomplished, together. Mostly, I am humbled at your ability, tenacity, love to bear witness to each joy, accomplishment, challenge and fate that was Donna's.

    There's a quote I love from Lao Tzu, a Chinese philosopher, that describes you and MTD "loving someone deeply gives you courage". The courage you both possess and possessed speaks all that's needed of how loved Donna is.

    Marian

  • Thank you for reminding us to be better mothers, to appreciate each moment we get with our children and to love them just a little bit more each day.

    Since finding Donna's story, her beautiful smile has filled my mind when I start feeling impatient with my daughter. Thank you for helping me find the joy in the little moments. Donna is inspiring me to enjoy it when my daughter proudly insists on showing me just one last dance move or brush her teeth (aka run the water) for just one more minute when we are 1.5 hours past bedtime.

    Thank you for sharing Donna. You'll have an army of mamas with you in spirit tomorrow.

  • Bethany shared this with her friends on Facebook. It is one of the most beautifully written, gut-wrenching things I have ever read. I am so terribly sorry for the loss of your gorgeous, wise, astounding child, and I thank you for sharing her with me.

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    Words seem so inadequate to express how much your blog has impacted my husband and I. We too have been to Oncologyland and have spent way too much time there. We are fortunate and know it as our son celebrates his remission anniversary today. Survivor Guilt does impact us greatly as we know too many sweet peas that were taken by The Beast.
    Your words about taking Donna's lead in the world of cancer were words we tried often to share with others when our son was going through treatment and testing. Oh how I wish the ending of Donna's story was different and your family could experience life with Donna there, wise and witty and wonderful.

  • Beautiful. Your most moving post so far. You are a damned good writer and a damned good human and a damned good parent (and not necessarily in that order). And know that your wonderful, magical child was so very fortunate to be part of your family, even as you may contemplate your own good fortune in having had the opportunity to be a part of hers. Your quote from Martin Luther, and your applications of it and "Choose Hope" to your life has changed my own for the better. You have inspired me at a time when I truly need it. Thank you so much for that.

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    I have to admit this is the one that truly hits home to me. I can completely see myself in this post. And I chose Hope from the day we started our adoption proceedings.

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    You are so inspiring. My cousin recently passed away from cancer at a young age. You are an amazing person, as is your daughter. Thank you so much for changing my views on the world, although I am only a kid myself.

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