Donna's Cancer Story: Surgery 2.0

This is the third 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.

Full disclosure here, I feel guilty about what you readers are experiencing with this effort of mine.  I'm a clinical social worker and know full well of a phenomenon called 'vicarious traumatization,' which happens when a trauma specialist spends day after day being exposed to another's trauma.  Mea culpa, my bad.  But here you are, and here I am, so let's get to it:

Donna looking up with big blue eyes

Whiplash is what comes to mind in this third month of Donna's treatment.  The month started with a plan to temporarily relocate to Texas for proton beam radiation treatment at MD Anderson.    Yes, Houston, we have a problem.  Three days before our departure, Donna had an MRI at Children's to establish a baseline for her treatment.  Before even leaving the hospital, our neurosurgeon called us to report that the "nub" of a brain tumor detected just 21 days earlier had experienced "explosive growth." 

What unfolded in the next days is something I would not wish on any living soul.  Plans were quickly scrambled and a surgery was scheduled.  Just ten weeks after her first resection, Donna's brain would be cut open in the exact same location.  This surgery took longer, though the recovery was much quicker.  Donna, the bull that she was, sailed through.  Her oncologist once referred to her as a "sweet princess" and I felt the need to correct him.  Donna was never a princess, she was more of a tough cookie.  Always had been.

On the heels of the surgery, while Donna was recovering in the neuro unit, the oncologist came by late in the afternoon a day or two later to toss out the suggestion that he would like to have a full body scan to rule out any migration of the cancer.  This sounded ominous to me.  Nothing like this had ever been mentioned or suggested before.  A pit embedded itself in my stomach and did not leave.  This photo was taken just minutes after that discussion.  Donna was in heaven and we were in hell.

Donna in the hospital

The CT scan revealed our worst fear:  Donna's cancer had metastasized to her lungs.  I wanted to vomit, instead I started to gasp for breath and wailed repeated apologies to Mary Tyler Dad, "I'm so sorry, I'm so sorry, I'm so sorry," over and over and over.  I felt guilty for something I had no control over.  I felt heartbroken that this was happening to my husband and daughter.  They did not deserve this. 

We were gently and compassionately advised by Donna's oncologist that it would be perfectly reasonable to not treat the cancer and let Donna enjoy the time she had left to the best of her ability.  A prognosis of 2-3 months was given.  Alternately, we could pursue chemotherapy with no roadmap or certainty that it would help.  Papillary meningioma has a poor track record if not cut out.  It tends to migrate and be non-responsive to adjuvant therapies like chemo and radiation, but the sample numbers were miniscule (as the diagnosis is so rare.) We were offered the shot.  They discharged us with the assignment to think it over. 

And this is where the whiplash comes in.  How does one carry their child home from the hospital with no treatment plan and a prognosis of 2-3 months and "think it over."  And Donna, bless her beautiful, innocent soul, had not a care in the world.  She was happy, felt great, was recovering nicely from her second craniotomy.  She just wanted to play and laugh and dance and read and giggle and be her own joyful self.  Here is a passage I wrote in our caringbridge journal from this month:

"There is a tenseness that does not go away, ever.  It is in our sleep, our wake, our breathing.  It is too difficult to imagine what we could lose and so we only deal with it in these incredibly potent, concentrated bursts of terror, doom, fear, and dread.  And then we have a tea party with Donna." 

There were many tea parties with Donna this month, despite our dire circumstances.  Park visits, zoo visits, play dates.  It was spring, and trees and gardens were waking up.  Donna, you see, was still just 22 months old.  She knew what she knew and wanted what she wanted.  We did everything in our power to protect and preserve her childhood.  We needed her innocence just as she needed our protection.  Mary Tyler Dad said it best, "She is an opiate for pessimism and despair." 

The family relaxes in the eye of the storm.

We took our cue from Donna, just as we had been advised to do by our wise and gifted nurse coordinator.  Donna was life.  She was so vibrant and vital and alive, that in the end, our choice to pursue chemo was made by her.  These days, the docs no longer tell you what to do, at least in our case where there was no track record of whether or not any of our options would work.  The choice was ours.  A game designer and social worker left to fend for themselves in this new terrain of medicine where the stakes were impossibly high.  Sigh.

Before chemo could begin, Donna's disease needed to be "staged."  Lord, how I hated that word.  Staging is a series of tests performed over a number of days to determine if and where the cancer has spread.  The anxiety will bring you to your knees.  Bar none, waiting for test results is in my Top 5 Worst Things About Being a Cancer Parent. 

Our timeline was so compressed that the docs admitted Donna to oncology before we had any results.  Chemo was ordered and administered literally moments after our oncologist gave us the good news that Donna's bones had been spared.  Poor guy was tackled by me with hugs and wails of relief.  When the toxic chemo started to drip in Donna's veins, she was sleeping.  I was huddled in a corner wrapped in a prayer blanket that had been gifted to me that morning.  There was a hush in the room  and the nurses silently completed their task.  The space felt sacred. 

Tomorrow:  Chemo

 

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  • Sheila, were you working during this time? Was Mr. Tyler Mom? How did you manage all the appointments, tests, traveling, and play dates on top of a full-time job?

    When Eilie was in the hospital at 6 weeks old for a run-of-the-mill virus, the nurses remarked that I was the only parent on the floor 24/7. I did it because I could, but what about parents who can't get off work or don't have care for other children?

    Please tell me you go time off from work.

  • In reply to christinewhitley:

    @Christine, most parents are urged to quit their jobs by the oncologists (at least we were). Unless you have a grandparent that can handle this, its something that can't be juggled or left to a nanny (especially with a baby or toddler...a parent of a teenager may be able to swing it but it still would be tough). We tried to juggle both working for about 2 months after Abigail was diagnosed but gave up and I quit my job for two years.
    I'd say of the families that I know, about 90% of them had to quit their jobs or take a leave of absense....most of them unpaid.
    We are left to rely on benefits held by friends to get by those years.

  • In reply to sbolen:

    What if your medical insurance is tied to your job? We have a friend who was diagnosed with pancreatic cancer (adult) who had to keep working (!!) during her treatment in order to keep her health insurance. Her partner was self-employed so her job provided not only her insurance but also her whole family!

  • In reply to christinewhitley:

    I will write about this issue in an upcoming post. Cancer is expensive. We were lucky that while I had to quit my job to be with Donna, my husband was able to work and maintain our benefits. There were a few children with a single parent or with two working parents who spent their days alone. Others did what we did, but worried terribly about the possibility of reaching their insurance cap. No easy answers and the world does not seem to care. Thanks for such a great question, Christine.

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    Having lived through 8 years of cancer treatments with my only child, I am glued to your story. It is a great thing you are doing, telling it in parts. Unless you have lived it, no one quite understands it and by you not telling the whole story at once, gives your audience a taste on how long this goes on for. My son and your daughter are cancer and pain free now, hopefully Elliott has found and befriended Donna. I know your pain and I am so sorry for it. God Bless
    Your friend,
    Cindy

  • In reply to Cindy Lobe Aldrich:

    I am so sorry about your Elliott. As my Dad is fond of saying, "There is no justice." Thank you for your insight into how Donna's story is being organized. In doing this I am going back and rereading hundreds of entries in Donna's caringbridge journal and sometimes I can't believe what we did and wonder how we managed. It is not day by day, but minute by minute. All my love, Cindy.

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    Having just have said good bye to my son's 8 year old best friend I have witnessed first hand what the blob can do. Blob being cancer since at 7 my son didn't understand what was growing in his friends abdomen. Thomas, his friend, was also diagnosed with an extremely rare from of cancer, and the roadmap was a blind one. I appreciate you opening your heart and sharing your story. It reminds me that those dealing with this sort of roadblock are not alone and shouldn't feel that they are. Thank you.

  • In reply to Bunnylover00:

    I am so sorry to hear about Thomas. I will be writing about this later in the month, but we used a book called 'Lifetimes' with Donna to help her understand death. It is by Bryan Mellonie and Robert Ingpen, published in 1983. Honestly, it is beautiful. And helped. Please consider getting it to help your son try and make some peace with what happened to his friend. Thank you for reading and much love to your boy who is learning at such a young age that things are not always so easy.

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