Donna's Cancer Story: Vacation

This is the sixth 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.

Remember that blessed routine I waxed poetic about just yesterday?  Yeah, things felt a little less blessed this month.  Not catastrophic, mind you, just hard and wearing and sad.  After a few rounds of chemo under Donna's belt, I was aching to get away during one of her healthy weeks.  We had good friends with a beautiful loft in Michigan, just a short walk from the beach, who offered their home for us to rest.  It was a Godsend.  I counted down the days of Donna's cycle, knowing that soon we would be capitalizing on her week of health in Harbor Country.  All things seemed possible and life was looking up.  Until Mary Tyler Dad got sick.  The night before our departure.

After an evening of overindulgence (cheese, not alcohol), Mary Tyler Dad didn't feel so well.  He was sick as a dog and I was mad as a hen.  Seriously, it was not my finest marital moment.  There he was, tossing his blue cheese burger, repeatedly, and I was pacing and incensed.  How could he?, I remember thinking.  My picture perfect family getaway where we were going to ignore cancer for five whole days was being usurped not by chemo or neutropenia or cancer, but by blue cheese!  It was one of the few fights we had about Donna's cancer.  I'm still not proud of myself.

Cheese aside, we made it, though delayed a day or so.  It was everything we hoped for.  Donna loved the space and made herself right at home.  She didn't like the beach so much, or the wind, or the water, but, you know, it was a suspension of our reality, so we were all buzzed with just being away. 

Donna at Lake Michigan

Kisses in Three Oaks, Michigan

We came home to more of the same.  The grind of chemo started weighing more heavily on our girl.  Her hair thinned, her eyes grew sunken.  As her appetite came and went, her weight just went.  For the three weeks not spent in health, her favorite place to be was in my arms.  So that's where she spent most of her days.  She would say, "Mama, let's rock and roll," which was how she asked to be held in the rocking chair in her bedroom.  We also called it, "loving," as in, "Donna, do you need some loving?" 

We spent hours together at home, with Mary Tyler Dad at the office, just Donna and me, rocking and rolling.  The downstairs sofa bears permanent imprints of my cheeks.  Donna watched hours of Caillou on the good days, impassively, she on my lap, a blanket over both of us.  On the bad days, the days a week or so post chemo when her body was grappling with the loss of its immune system and the medicine we injected each night into her port to stimulate her bone marrow, GCSF, caused significant bone and joint pain, we were more likely upstairs on the kitchen floor.  To this day I don't understand it, but that is where Donna wanted to be held.  Sometimes I would sit on the floor and she would rest her head in my lap.  I wrote at the time, "She wants to be in our arms in her misery."  It was so very sad to not be able to make the pain go away.  The most I could do was keep her company there, in her misery, and assure her she was not alone.

Eating and drinking would be measured in bites and sips for days and then, like a switch had been turned, Donna would devour amazing quantities of food.  Plates of tortellini and gallons of milk.  She would be voracious.  And then, flip, the switch turned again and we were back to bites and sips.  And as Donna's mood went, so did ours.  On the good days the sun shone brighter, the grass was greener, the flowers never lovelier.  On the bad days, well . . .

Seeing Donna suffer and physically diminish lead to some pretty dark thoughts, too.  We both tried, Mary Tyler Dad and I, to, if not make sense of what was happening, at least try and make peace with the possibilities of what could happen.  We worried about the chemo not working at some point.  Or we worried about what came after the chemo.  Those thoughts were there always, especially after Donna went to bed at night.  One night I wrote in our caringbridge journal, "Even if Donna's life is abbreviated, she has woken up each and every morning to love and comfort and arms wanting to hold her and lips wanting to kiss her.  Not all of us are that lucky in this world."  And those words were true, but still, the thought of her death was unbearable, but close. 

In this photo, Donna is wearing her robot pajamas.  She loved them so.  I put Mary Tyler Son to bed tonight wearing them.  He loves them, too.  They brightened her night to put them on.  When I bought them, I cried.  When you have a child with cancer, you never know how to plan ahead.  I always bought Donna's clothes off season.  At the end of winter, I would stock up for things she would wear the following winter.  That stopped cold when the cancer was diagnosed.  Anyway.  When paying for the robot pajamas at the Old Navy I had an especially chatty cashier.  He was pushing sales, too, and kept encouraging me to buy more than the two pair I had put on the counter.  I politely told him two was enough.  "But they're on sale," he said, helpfully, "Get the next size up!"  Cue tears here.  I couldn't stop crying when he said that.  The poor guy didn't know what to do with me.    

Donna in robot pajamas

Tomorrow:  Questions

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    This is such a beautiful story you've put together. Your daughter was such a gorgeous baby....I'm so sorry for your loss. I'm looking forward to tomorrows post and your way with words. Thank you for sharing something from your heart.

  • In reply to Angie Gutierrez:

    Thank you for reading, Angie. Thank you for telling me.

  • Each day I feel your pain more and more but that will not stop me from reading. When I look at her sweet little face I just want to cry for you and for the loss of such an angel. Your strength amazes me.

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    I don't even know what words to use to explain how i feel reading this. I could not imagine going through what you have gone through, esp being i have a 23 mth old girl. The part about the kitchen floor really got to me. " She wants to be in our arms in her misery." Wow, God Bless you and your family.

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    Somehow, I love the robot pj's. And fully understand about the poor cashier. I have tramatized my share of cashiers, desk clerks and receptionists.

    Thank you for writing. It is important for those of us who have not walked to journey of pediatric cancer to understand, as best we can, the truth of the day to day of that journey. What a strong mama Donna and Jay have!

  • In reply to Kathy Sutton:

    <3

  • I found out about your blog through a friend of mine who is also experiencing this crappy thing called childhood cancer. Her daughter is 2 and has been battling Leukemia for 2yrs. I lost my mom to Leukemia and although much different than losing a child (i can't imagine) I still really freaking hate cancer. My mom was diagnosed and died a week later. I read all 6 posts to get caught up and I will be following your story for the entire month. I will do everything I can to bring more awareness to childhood cancer so hopefully there will be more happy endings. I think your writing is amazing...so is my friends. I guess that's one of the gifts of cancer. Thank you so much for sharing Donna's story. She is absolutely beautiful. I will be with you through this month with my tissue box. I am so thankful to have you and my friend to constantly remind me to appreciate life and be thankful for my daughter's health. It's all to easy to forget to count your blessings. Thanks so much for your strength and courage.

  • In reply to christis:

    Thank you for reading, christis, and keeping me company.

  • Thank you so much for sharing your story. I just discovered this tonight, and instead of reading one of her books, I read this aloud to my 7 yr old daughter. Even though some of the medical terms had to be explained to her, she listened, and when I finished, she said, "That little girl was so brave. And so is her mom. But that's just what moms do when their kids are sick."
    Your story reminded me tonight how blessed and thankful I am to have a healthy daughter and to never take it for granted. I (we) look forward to tomorrow's post.

  • In reply to MommaMeg:

    Thank you, MommaMeg. You just kind of made my night. And the image of you and your girl curled up and reading and learning about Donna, well, I'm honestly just floored. Thank you for reading with your daughter. You are brave.

  • I've only been able to read this blog piecemeal. I have two baby girls and everything you're saying is just punching me in the gut. You are amazing. I can't believe someone is strong enough to tell this story.

    The Old Navy pajamas made me lose it. You have my heart.

  • If I don't tell Donna's story, no one will. She was too amazing and brilliant and loving to be forgotten. This is how I parent her now. Thank you for reading, Jenna.

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