Donna's Cancer Story: The North Pole

This is the twenty-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.

I was eight months pregnant during this month, still working, and that was tough, cause, man, fretting can be a full-time gig.  Mary Tyler Dad and I were bone tired.  The grind of daily life coupled with the impending addition of a newborn on top of the gnawing, tenacious worry and fear and doom attached to the uncertainty of Donna's cancer was threatening to disable us.  Donna was simply Donna.  When family visited from out of town we would anxiously await their assessment of her.  To us, she seemed stronger, more vibrant, more physical and not remotely like there was a tumor snaking up the inside of her skull.   

Donna in blue coat

The holidays were approaching.  After last year's stem cell isolation over Christmas, we were working hard to make the season special for Donna.  When I asked her what she wanted Santa to bring her, Donna would say, "I only want you for Christmas, Mama.  And candy canes!"  Donna was pretty clear about how she felt about Santa:  "I hate him."  Wow.  To hear that coming from such a gentle girl was both funny and alarming.  Donna gave strict instructions that Santa was not to come into our home to deliver gifts.  They were to be left on the deck where her Dad and I could retrieve them.  One night, before bed, Donna asked for a story about day hospital, where she received her bi-weekly chemo.  I started in and she quickly interrupted and said, "Dr. Stew is not scary.  Santa Claus is scary, but not Dr. Stew."  Oh, my girl.  My girl, my girl. 

Each afternoon when I picked her up from the sitter we would drive around a bit and look at decorations.  She loved the inflatable snow men and reindeer.  She loved the festiveness.  She worried that the trees were cold and lonely without their leaves and thought that all of them should have lights to keep them company until their leaves grew back.  Her empathy at three still takes my breath away.

I was a bit of a wreck in these weeks.  So close to delivering, I felt uncomfortable and frantic that our Donna-Mama time was coming to a close.  I was conflicted about bringing a baby into the chaos of our lives.  Full disclosure:  I was scared out of my wits.  I was scared for Donna, I was scared about managing two kids, I was overwhelmed.  Just managing cancer was a lot, how, on God's green earth, would we do this cancer thing with a newborn in tow?  Throughout her treatment Donna had two parents giving her everything we had.  With a newborn, that would change.  We would be caring for two kids, not just one. 

Donna kissing pregnant Mama

Possibly sensing this, our team at Children's threw us a bone.  No scans this month.  Donna would proceed with a couple more rounds of the Avastin and Irinotecan with scans just before Christmas.  The plan would be reevaluated when the results were back.  A reprieve from bad news was welcome. 

Early in the month we were guests at a holiday party at O'Hare Airport sponsored by United Airlines for children with life threatening illness, a "trip to the North Pole."  One of the Child Life therapists offered us the invitation in early November.  When she suggested it I gladly accepted, but when I saw the invitation, my heart sank.  " . . . for children with life threatenng illnesses."  I put it on my bill pile and it sat.  I actively ignored that invitation until the very last day that I could.  I did not see Donna in that way and did not want to see Donna in that way.  The girl I woke up with and bathed and fed and read to could not possibly have a life threatening illness.  And yet, she did.  That was the rub.  Bastard cancer.

The day of the party there was a bit of a buzz.  Donna wore her prettiest black velvet dress with metallic red mary janes.  She even let me put a plaid bow in her hair.   That made me disproportionately happy.  We arrived at O'Hare, were ushered through security by United volunteers wearing red noses and reindeer antlers, and were guided to a party at the gate.  Then, with tickets in hand, we got on a plane, taxied around the airport (before 9/11, they actually used to fly around for a while), and "landed" at another gate where we deplaned for lunch and a visit with Santa. 

Family at North Pole

As the folks from the full plane exited the tunnel to the gate, there were two rows at either side of Chicago fire fighters and police officers giving these kids standing ovations.  I lost it -- tears, sniffles, undisguised emotion.  Something about these men and women who put their lives on the line daily saluting these kids whose lives were currently on the line really moved me.  To this day, I well up when I see a fire fighter in full gear.  For so many kids, officers and fire fighters are their heroes, and here they were, in full uniform, saluting and honoring these children.  I am crying when I type this, just remembering.

Donna had a love/hate relationship with this party.  She was a girl who loved her parties and wearing "party shoes."  The staff of United and volunteers treated us like visiting dignitaries all day.  We got to visit the "Elves' Station," where Donna was presented with a cart loaded to capacity with gifts for her - - it was obscene, really, the amount of swag gifted her.  But something in Donna's temperment or something that had changed in her chemistry from the tumor or chemo contributed to bouts of skitishness that were difficult for her and us.  She was terrified of Santa.  She was traumatized by the roaming Ronald McDonald who somehow could not get the message to leave Donna alone.  The amount of people there was too much for Donna.  She wanted to go home.

I chose this last picture because I think it is a perfect analogy for Childhood Cancer Awareness Month.  You have to look to find us - - there we are on the right with the previously mentioned swag.  The airport is busy and bustling around us.  No one is looking at the girl with cancer.  No one knows Donna has cancer, yet there she is, right there in the midst of everybody else.  Our lives are busy, frantic, scheduled.  We need to get from Point A to Point B fast.  Who looks around and notices all that is going on right in front of them? 

Donna in busy airport

Look at this picture and see Donna and know that all around you, even when you don't know it, there are children with cancer.  Some will live, some will die, many will be affected by the toxicity of their treatment for the rest of their lives.  They're right there every day even when you don't see them.  Donna's hospital was often filled to capacity.  Every day those beds are filled with children newly diagnosed, in the midst of treatment, celebrating the end of treatment, or dying.  Every day. 

Tomorrow:  It's a boy!

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    Intense. I don't even have words.

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    Every day I read your post, I stand in awe.

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    I am not a 'cryer', never have been, probably never will be. But everyday, as I sit and read your story about Donna, my throat constricts, and I at the very least well up with tears. Today, I am at my desk sobbing. Everyday I read this, I feel closer to all of you, and am more and more touched by what is occuring. You are so much stronger than I could ever be. I am in awe of you.

  • I have a business meeting to go to in half an hour. Knew reading today's post would bring lots of tears to my eyes, yet again, but I had to do it in internet support of your beautiful family. The meeting seems so very, very unimportant.

    Here's one thing that makes me angry. We spend trillions of dollars on war, yet there is inadequate government funding for childhood cancers, cancers that are taking away from us these spectacular citizens of tomorrow? For shame

  • Yet again more tears today, especially looking at the pictures of your sweet Donna. I don't want September to end because I don't want Donna's story to end. Oh I know it will and I know how it does and I just don't want it to. I want more pictures and more stories.... I want more Donna :) A perfect stranger feels this way I CANNOT imagine how much you miss her MTM and MTD. My heart goes out to you.

  • I haven't all out cried yet while reading these posts, but this one got me. I'm crying at my desk right now. Such a joyful and beautiful child.

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    MTM,

    Every one of these installments is a jewel -- a tiny, compressed glimpse of so many things at once, and yet, by the very nature of the entries, removed from the moment. To me, the sharpest observation here is the one sentence at the end: Tomorrow: It's a boy!; everything in this installment happened, pushed up against you and your family, and left you changed, and all the while, the arrival of Mary Tyler Son was on the horizon. Donna's cancer and Mary Tyler Son's birth don't seem to fit together -- and maybe they don't -- but there they are, all the same, and no amount of wishing can pull them apart.

  • I have been following your blog the last 3 weeks. Your story is remarkable. My heart goes out to you & your family every day that I read what you have posted. Your strength is amazing & the pictures of your beautiful Donna tug at my heart. Words can't express how I feel about how you have shared this nightmare you & your family have gone through. Because of what you wrote about the Caringbridge, I have joined but I was not able to find your story there. May your family find the peace you all so deserve!

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    I feel guilty that at age 33, I was diagnosed with a meningioma that was benign, as are 95% of them. Why Donna? This beautiful little child with her whole life ahead of her, it is hard to wrap my head around. I read your story everyday. I HATE CANCER. Childhood cancer especially, there is no place for it anywhere in life.
    Your story is a beautiful reminder of just how precious life is. God bless your family, and Donna's wonderful spirit.

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    Thank you. Emily was diagnosed Christmas day 1994 with neuro blastoma by August 1994 she was gone. She was 2 and one half years old. Until now I have not really grieved. You see she was not mine, she was my then partners child and always felt that I had no right and at the time I felt I had to be string for her father, his family and my own son who was 3. Over those months, between diagnosis and Emily's passing, I was humbled by her strength, her understanding and most of all her compassion for those around her who were trying so hard to hide their sadness and pain. RIP Emily

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    Donna shines and simply gives off light. I don't think I'd ever have to look for her; her presence is demanding in the most beautiful way. Your strength as a mom is so powerful. The way you always did what was best for Donna, even if it meant feeling deep sadness, of fear. I admire you. And whenever I see a bald child, I make sure to say hello and smile. There is so much more to these children than just cancer.

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