Donna's Cancer Story: Diagnosis

This is the first 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.  

This is Donna, my beautiful daughter, named for her grandmother, my mother, who died of a brain tumor when I was pregnant.  So many Donnas, so many brain tumors.

 Donna

Donna was diagnosed with papillary meningioma, an aggressive brain tumor on March 23, 2007.  She was 20 months old.  We learned this after an emergency CT scan was done and within moments a doctor said the words, "There is a mass in your daughter's head."  There is a mass in your daughter's head.  It bears repeating because with those words our lives changed:  Just.  Like.  That. 

In the two to three weeks leading up to diagnosis, we began to notice changes in our girl.  She became moody, clingy, fearful, cranky.  Her appetite diminished and walking became difficult.  Donna was always what we called a "considerate baby."  She was patient with her older rookie parents and had a sweet disposition.  Her personality and physical changes were concerning, but confusing, too -- could they have been the onset of the terrible twos? 

No.  What we were seeing was the result of spinal fluid building up in Donna's brain caused by the tumor growth.  Hydrocephalus can be fatal and often is.  Gratefully, Donna was admitted to Children's Memorial in Chicago on a Thursday evening to fast track her for an MRI the next morning.  But by  six that next morning, Donna started vomiting and became unresponsive.  Her last words to me, slurred, were, "Change your diaper, change your life," something I would say to her often.  She was rushed to the CT machine to determine what was happening.  I now understand the word 'stat.' 

Minutes after the confirming CT, Donna was rushed into surgery to drain the fluid building in her brain.  She was kept sedated over the weekend in the PICU and on Monday morning, bright and early, had her tumor resected.  All looked positive, as the neurosurgeon believed she had removed it all, but a diagnosis would take weeks to come back.  Even then, after Donna's tissue was sent to Washington U. and Johns Hopkins, there was still some dissent amongst the experts.  Without a clear diagnosis, and then such a rare one, a treatment plan was not easily identified.  Watch and wait was the order of the month.  Watch and wait. 

After the initial ten day hospital stay, Donna returned home, but had several ER visits for mysterious fevers that resulted in hospital admissions.  Infectious disease was called in, but the only thought was that Donna may have had a virus.  Also possible was that the tumor that had been resected was in the left posterior fossa, where our temperature controls are housed in the brain.  No one knew. 

This picture was taken just minutes after we returned to our home from the initial hospital stay.  Donna is still in her gown from the hospital and the dressing on her head is from the first surgery to relieve the pressure from the hydrocephalus.  Our neurosurgeon used a dressing shaped like a heart.  We heart you, Dr. Bowman.  The relief in Donna's face and posture was palpable as we carried her through the door.  I say carried because after ten days in the hospital and the few weeks of decline prior to that, Donna had lost the ability to walk.  Regardless, those were her books, her toys, her crib.  Donna was home. 

 Home from hospital

This is a photo of where the tumor was resected.  The cut is called a "hockey stick."

Hockey stick scar

Tomorrow: Relapse

Comments

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  • I don't know where you are finding the strength to do this everyday. She has the face of an angel.

  • In reply to teporama:

    This is an expanded version of a series I did last year on facebook. Honestly, it helped me, though yes, it hurts like hell, too. I know that every night for the next 30 nights I will be looking at every single photograph from Donna's diagnosis on and it is daunting. But this is how I parent her now, by telling her story and sharing what an amazing girl she was. Thank you for reading. And I just finished your post about the oldest leaving the coop. That's tough, too. Please consider sharing if you are moved. Much love.

  • I will post this on my Being Catholic ... Really wall and ask people to pray for your beautiful daughter and her family.

  • In reply to siblingless:

    Thank you. And feel free to ask for prayers for all children dealing with cancer and illness and their families. I'll be sure to check in to your post.

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    Thoughts and prayers are with you and your family. No child should ever have to deal with this.

  • In reply to arica:

    You're right, Arica, but they do. Every day 46 children are diagnosed with cancer in the US and every day 7 more children will die. Thank you so much for reading and please consider sharing if you are moved.

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    From one brain tumor survivor to another...you GO GET EM DONNA! You are in my thoughts and prayers!

  • In reply to Sarah Virchow:

    Thank you, Sarah. You GO GET EM, too!

  • Thank you so much for sharing this. I can't wait to meet Donna through your words.

  • In reply to ntkv:

    I love to write about my girl and for months, daily reports on her caringbridge.org page was our therapy. Please keep reading and consider sharing if Donna's story moves you.

  • In reply to Mary Tyler Mom:

    Caringbridge.org is wonderful! I have passed that link around many times!

  • Tears already.
    Knowing how this ends makes it harder to read, but it also gives me perspective and insight.
    I started reading your blog only a few months ago, so I'm relatively new to your story. I commend you for the courage it must take to revisit such a difficult time in your life.
    You are a strong and amazing woman, and an inspiration to us all.
    I am looking forward to hearing the rest of Donna's story.
    Love and light to you.

  • In reply to kantal113:

    Now you're making me blush. I'm alright, but Donna was amazing. Keep reading, kantal113!

  • I hate that you had to go through this, but I hope it will help other families dealing with similar tragedy. Donna is beyond adorable, a true angel.

  • In reply to Yoga Mom:

    Thank you, Yoga Mom! I think so, too.

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    Your strength is amazing and your daughter is beautiful. Thanks for sharing her story.

  • Wow. Day one has me crying... making mental note to move kleenex closer to the computer for the coming month. My daughter (a cancer survivor) was named after my sister who died of cancer at 16. You are the 2nd person I've met whose child carried the namesake of someone who died of cancer. For a while I thought I cursed my daughter... and that I reminded myself I don't believe in such things. wonderful writing! I enjoy all you do and hope this is cathartic and healing for you. I could see how it would be for me. xo

  • In reply to annie:

    Thank you, Annie. Yes. I can see that my evenings for the next 30 days are going to be rough. I read your story and think about how terrified you must have been when your daughter was diagnosed after losing your sister. You knew intimately what the risks of cacer are. I am so sorry for that. Thank you for your support.

  • U R an ANGLE!

  • As the mother of a critically-ill infant who survived, beat the odds and amazes me every day, I cannot imagine your strength as you write these entries. I am so moved. Thank you for sharing your gift of writing, your personal story and your heart. xo.

  • In reply to kma03:

    Thank you, kma03. The writing is helpful, but folks' reading and learning about Donna is what keeps me going. Thanks to you and others like you, I'll keep writing. Thank goodness that your child is safe. It changes how you parent, I imagine. We can't erase what we know.

  • WOW...I came back to re-ready this story. Words cannot express how I am feeling. I want to do something to help the cancer foundation. xoxo

  • In reply to verybrite:

    Verybrite, you just made my day. In doing this series, I hope to teach others about pediatric cancer and the realities of it, how it affects families. I have two charities I would recommend for pediatric cancer foundations:

    www.curesearch.org and www.stbaldricks.org

    Both do amazing work in funding research and raising awareness, but mostly funding research and with excellent track records in now wasting $ for fundraising, enabling all donated $ to go to their mission. Thank you!

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    Wow my cousin came accross this and shared the link with me. i can't even express words right now because my eyes are filled with tears.

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    Most parents naturally think their child is more profound, more unique and more amazing than others but in regards to your Donna....I agree.

    I randomly came across your blog about your son, the baby sitter and the ladybug boots. I instantly LOVED your style of writing, continued to read and then clicked on Donnas cancer story. My heart broke.... I read the story twice and looked at all her pictures including more that I found on line. My favorite is the one of her full frontal in her black leotard with the sweetly serious expression.

    Many years ago there was a story and movie about a little girl that died at 8 of cystic fibrosis...Alex:The Life Of A Child. The movies style is dated by now but the content is still as powerful....in the end when she was very near death she asked her Dad for root beer. His visit to the market and the pouring of the root beer on the lawn is something I will never forget. I will now never forget Donna either.

    I am so sorry for your loss. I don't think I could handle it with the same grace that you and your husband did. Bless you from the bottom of my heart....I too believe we shall all meet again!

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