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Donna's Cancer Story: The End

Posted: 10/01/2012 10:23 am

This is the final installment of Donna's Cancer Story, which appeared daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post covered one month of Donna's thirty-one months of treatment. Read now or start from the beginning here.

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There are no photos of Donna today, as there is no Donna today. Donna died on October 19, 2009. She was four years, two months, four weeks and one day old.

The Bubble we had enjoyed permanently popped one afternoon when Donna woke from her nap. When she reached to take my hand, I noticed her left arm was trembling, shaking gently. A couple of days later her head started tilting to the left. A couple days after that her balance changed. Then her walking.

The signs were unmistakable. The terror and doom consumed more and more of my thoughts. The reality of what was happening to Donna was indisputable. She would die and it would be soon. Days? Weeks? No one knew.

Donna continued in preschool during this time. I fretted so as I dropped her off in the morning. I asked her if she would feel more comfortable if I stayed with her, that I could help her if she needed it. "No, Mama. If I need help, I will ask a teacher." Grit and grace in equal, lovely portions. I would wait anxiously for her at the end of the morning when the parents gathered to pick up their kids. Each day, her teacher reported Donna did beautifully, that she had not needed any help. She played outside, climbed the stairs to the library and showed no signs of distress. That was Donna. Strong as an ox, yet delicate as a flower. That was her beauty, her shine.

On a Thursday night, stalling as she did so well ("My Little Stallina" is what her Daddy called her), Donna gave her Dad and I a concert. She stood on a step stool and sang "I'm a Little Teapot," "Twinkle, Twinkle Little Star" and "Row Row Row Your Boat." She sang each song three times. She was beautiful. And so happy.

The next morning Donna woke and was different: moody, clingy, listless. The next day, after a trip to the zoo and a nap, Donna woke with a headache. The hospice nurse came immediately and started morphine with good effect. Donna asked for macaroni and cheese, "the good kind, Mama," and I ran to Noodles and Co. for her. God bless the stranger who sat next to me as I waited for the order. Donna ate well and promptly threw it all up, but felt great. She had a bath and played, played, played. She was loud and I worried her singing would wake up Mary Tyler Son in the room next door, but I didn't care.

We had another trip to the zoo that week, Donna bundled and her cheeks covered in her Auntie's deep pink lipstick. She rode the carousel and was happy. On the night before my birthday, Donna baked me a cake. She used the heart shaped pans. It was delicious. A couple days after that, Donna spoke her last words. "Mama, Mama, Mama," she called out to me. Her tone was anguished. I held that girl tight and close for the last time.

Dear friends made a pumpkin memorial to Donna on our front lawn during her vigil. There were dozens and dozens of pumpkins with written messages of love and support for us and jack-o-lanterns that lit the night with their warm, comforting glow. Each night someone appeared to light them and after Donna died they took them away for us.

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After a few more days of deep sleep, Donna died. She had been receiving morphine to manage her pain and she appeared comfortable. No grimacing, no furrowed brows. On the fourth night of Donna's deep sleep, her Dad and I fell asleep at midnight. At 2 a.m., when the medication alarm went off, Mary Tyler Dad woke and Donna was gone. He gently touched me, my eyes opened to Donna next to me, and it was over.

In the end, Donna knew she would die. Unlike me, she had the courage to bring it up so we could acknowledge it. At the suggestion of a neuropsychologist at Children's Memorial, we bought a book called, Lifetimes: A Beautiful Way to Explain Life and Death to Children by Bryan Mellonie and Robert R. Ingpen. God bless these two men. If I had to look at one more suggested book about burying a cat or a fly-a-way balloon to use as a tool with Donna about her death, I would have hurt someone.

We put the book into circulation, and Donna was fascinated with it. We all were. The illustrations are gorgeous and do not attempt to make death pretty with balloons and rainbows. Death is not pretty. It is real and can be beautiful, but it is not pretty. As with everything, Donna took the book in and understood it more deeply than we could have imagined.

One day, on the drive to her school, Donna asked me from the backseat who we knew that was dead. She told me she would miss me when she died and she worried she would be sad and lonely. Then she told me that bones didn't walk. Bones had become a symbol of death for her because of dinosaurs. She was fascinated with them. She knew that my Mom, her Baba, was now bones. I agreed with her and told her that bones needed muscles and skin to walk. She calmly told me that bones did not talk either. I told her that I didn't think bones needed words. I told her that many folks believed you come together with the people you love after you die. I told her I hoped I would be with Baba after I died. Driving, tears streaming down my face, I could not tell my daughter that I hoped I would see her again after she died. I couldn't do it. Fail.

Five days later, at bedtime reading books, Donna said to me out of the blue, "Why am I worried I'm dying?" She said it twice in a row. "Why am I worried I'm dying?" We talked about her question and quietly, I agreed with her. I told Donna I thought she would die soon, too. Her tone of voice, both of our voices, were calmer than one would think in that kind of conversation. We talked about how sad her dying made us. We talked about heaven and that many, many people believed it was a place of reunion and peace. A few moments later, I asked Donna why she thought she was dying. Did she feel differently? Did she hear someone say those words to her? Donna told me she was hearing things her body was telling her. I was comforted by how relaxed she was in our conversation. She was not overly afraid, but honest and curious and open. I turned out the lights and we snuggled. Donna asked me what my favorite part of the day had been. "Our talk just now," I said. "Me, too," she said.

Fifteen days later, Donna died.

Row, row, row your boats, dear readers, gently down those streams, because merrily, merrily, merrily, folks, our lives are but a dream.

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Tomorrow, in response to your tremendous response to Donna's story, I will post some information about how to help further the cause of pediatric cancer, focusing on raising both dollars and awareness. If you've been moved by Donna's story, please stay tuned.

Read All Of Donna's Cancer Story Here

 
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This is the final installment of Donna's Cancer Story, which appeared daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post covered one month o...
This is the final installment of Donna's Cancer Story, which appeared daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post covered one month o...
 
 
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04:10 PM on 10/03/2012
Beautiful, beautiful. So sorry for this loss, but thank you for sharing. My son has special needs, and can be quite challenging behaviorally, but you have reminded me to cherish each precious day. Again, so sorry for the loss of your daughter. There are no words.
03:45 PM on 10/03/2012
I found this through a message you left on another father's post. You mentioned Donna and I immediately thought of the tiny dancer Donna. But surely there are other little girls named Donna that were taken too soon by cancer? No, it was indeed the little dancer.

I briefly followed Donna's carepage, even after 2 years I remember your daughter's sweet pictures and will always remember the picture of her titled "onward".

She is not forgotten, even by total strangers.
for some reason I just had to let you know that.
11:58 AM on 10/03/2012
So brave, all of you.
10:55 AM on 10/03/2012
Oh my gosh. This is just amazing. Amazing writing, amazing strength, amazing Donna, amazing mother.
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Christina Belcher
10:01 PM on 10/02/2012
Your blog made me sad and I cried quite a bit but I am thankful for you sharing your story. I think that I get so hungup on eveyday nonsense. Complaining about bills, little things that are in my way. We lose sight of what really matters. I gave my daughter an extra tigh hug after I was done reading the last segment.

I also firmly believe that you will be reunited with your daughter. She is watching you and her spirit will live on. It is still so incredibly unjust to lose a child. We are not meant to outlive our offspring. You are in my thoughts.
06:27 PM on 10/02/2012
I am at a loss for words, after finishing your blog. She is and was wiser than her 4 years, Such an enchanting child. I am glad you had her for her 4 years on earth, and can understand how devastated you and your entire family must be. Please take comfort with the knowledge that she is with Jesus, and you all will be reunited in time to come.
May God bless you all.......
03:44 PM on 10/02/2012
Beautiful story, beautiful family, beautifully written. I am crushed and uplifted at the same time. Thank you so much for sharing.
02:37 PM on 10/02/2012
I cannot even begin to understand your pain! I am so sorry for your loss!
01:04 PM on 10/02/2012
wow I have been following your story this month, and have been deeply touched by all of it. Although I can not begin to imagine what this was like for you and your family, I do know how inspired I am at not only little Donna's strength but the whole family. I hate the term "everything happens for a reason" because no one wants to consider there is a reason for a child to die. They have so much to experience, a whole life ahead of them! Children are so loving, so trusting, that they should never experience such deep, dark things. But, through it all, this little girl, like many others have been brought on this Earth and have taught us adults so much more than we ever would have known otherwise. I'm truly sorry Donna had to go before her time, but I will forever be touched by your strength through it all.
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Bethanese
I may argue with stupid, but not with crazy.
09:09 AM on 10/02/2012
Your eloquence has allowed your readers to step into your shoes (partially, anyway) for a moment, and as much as you were right about the vicarious trauma thing, it is extremely useful and productive to have that kind of perspective. For a long time I could not get past the part about her last words; even as I write this the thought makes me tear up. After praying hard for Donna, you, your family, and all those little angels who left us too soon, I finally read the rest this morning in private where I could cry freely while clutching my baby girl in my arms tighter than I think I ever have before. Thank you for making me (and everyone else) more aware not only of the ugliness of cancer but of the beauty of life and living each day as it were your last. Much love and happiness to you.
jdave1
Mind like parachute: works best when open.
07:17 AM on 10/02/2012
It is a tragedy that such a beautiful person had to die so young, but it is indeed a miracle and a blessing that she was ever here at all. Thank you for your courage and eloquence in sharing this. Words are poor tools at times like these, but they are the only tools we have.
01:27 AM on 10/02/2012
I read your entire blog in one sitting. It took me a long time to read as it took some time to absorb the chaotic nature of cancer. What a beautiful and inspiring little girl. I kept strong by not crying through out the blog but the paragraph of little Donna asking about why she was afraid of dying got me. I started bawling as reality set in that this little angel is no longer walking with us. She is such a courageous young girl, going through so much at such a young age. I cannot imagine how you survived such a trying ordeal and losing someone that you love more than yourself. Even though she may not be here with us physically, Donna's legacy will live on in our hearts.
01:22 AM on 10/02/2012
Our son died WITH Neuroblastoma in 1989. Donna's story informs and expands Justin's story. Thank you SO very much for expressing what I've never been able to fully express. We belong to a club that no one wants to join and we've seen it all.

I wish you peace.
Rachel at mamasoncall.com
12:27 AM on 10/02/2012
I read it last year, and read it again this year. Shared it as well. Still in tears, even though I know how the story ends. What a brave, courageous, witty, inquisitive, creative soul she was! I can't get past the fact that she passed on my son's birthday. Last year, I took a moment to remember her on that day...after reading your blog, it stuck with me. (Just a silent moment). My son was born a preemie and is lucky to be alive today. I say a blessing on his birthday every year...just inlcuded Donna last year.
10:51 PM on 10/01/2012
This is just beautiful. I'm so sorry for your loss and so amazed that you could turn those thirty-one months into such a moving, lovely tribute to your daughter's life and your whole family's journey. Thank you.