Donna's Cancer Story: Questions

This is the seventh 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.

Donna being bashful.

The fact that Donna's chemo was working and working so well caused a bit of a conundrum for all of us.  Nobody quite knew what to make of it, but as the months went on it was clear that the "sledgehammer" of ICE was nearing its end.  Turns out there is only so much toxic poison you can pump into your body before it starts responding, or stops responding, in Donna's case. 

Donna's kidneys were showing some damage at this point.  She was on saline fluids overnight now almost constantly, infused with minerals like phosophorus and magnesium that her kidney tubules were no longer able to reabsorb.  The docs were also worried about her hearing and heart.  All seemed well and tests showed no change, but they worried. 

Our oncologist always said that not only did he treat Donna today, but he treated the future Donna as well -- he was acutely aware of the risks associated with survival of one's pediatric cancer diagnosis.   Oh, the stories I could tell you about the kids that survive their diagnosis.  But that's a heartbreaking post for another mom to write. 

With the end of ICE -- four rounds, which was an astounding feat for little, delicate Donna, she moved to a lesser regimen known as VAdriaC.  Donna presented as a shy, meek girl, but she was steel.  Administering VAdriaC was a walk in the proverbial park after ICE.  Two quick pushes of one med, an hour long drip of another, followed by eight hours of fluids.  Piece.  O.  Cake. 

With the growing awareness and concern for Donna's organs, it was time to answer the question, "What's next?"  This was difficult for all the stakeholders.  Because papillary meningioma was so rare, just as there was no roadmap for us the docs could provide, there was no roadmap for them either.  On October 19, 2007, I wrote this:

"What is most scary for [Mary Tyler Dad] and me is that answers simply don't exist.  There is not a book to be consulted, or a particular expert that could say with any confidence, "This is the path you take."  There is no way to determine when Donna has received enough chemo, or if that even exists.  We make a choice and hope for the best.  In the absence of data and research on Donna's type of cancer, we make educated guesses guided by our team.  Talking with [our oncologist], we asked a question we've been afraid to ask, "Are we working for a cure here, or just to extend Donna's life?"  It is so hard to ask a question you don't necessarily want the answer to.  Without hesitation, [our oncologist] said, "We're going for broke.  We haven't done all of this for an extra six months." 

So, you see, the stakes were high. 

And next to those lofty questions were more pressing issues, pun intended.  Constipation, or "Connie," as I called her, was Donna's arch nemesis.  Donna responded to all chemos the same way:  her poop chute shut down.  And I write in jest, but Donna's constipation was terrible.  Horrible.  The chemo did its thing and then the appetite went and then thirst went.  Nothing was going in, so nothing was going out. 

And the means to manage Connie were either useless or cruel.  Elimination became tortuous at times.  It was not uncommon for Donna to go 4-6 days without a movement.  And when Connie was hanging around, hemorrhoids were sure to follow.  This was a cycle that could not be stopped.  As a parent, you felt useless and negligent.  To this day I don't eat bananas in solidarity with Donna.  Poor, dear girl.  Something so basic, so primitive as poop, became simply torture for her. 

But enough about poop.  The three pictures today are from a simply perfect fall day at Wagner Farm in Glenview, taken during Donna's one week of health.  Auntie was in town and we had a grand time, despite the fear of God that large farm animals instilled in Donna.  She rolled with it and spent time with the pumpkins instead.  Gourds are much less threatening than horses.  Donna was shining from within on this day.  She had her Mom and Dad and silly Auntie and that was all she needed.  The sky was blue, her head was bald, and Donna didn't give a fig. 

I have thought often of just how much we were spared that Donna's cancer came to her at such a tender age.  She was free of fear, free of context, free of self-consciousness.  She didn't know what cancer meant, didn't know that childhood was not supposed to include things like MRIs and surgeries and "tubies" and hospitals and a prognosis.  When people stared at her, and they did, I believe she either didn't care, or was just  used to being stared at, as toddlers often are. 

If you see a bald child, smile.  Look their parent in the eye.  Let them know you understand.  Be aware that you are looking at greatness.  Know that kid is amazing and brave and so very, heartbreakingly vulnerable.  Just like Donna.

Big horses are scary.

Donna and Mama and pumpkins

Tomorrow:  Stem Cell Harvest

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    I came here to catch up on Donna's story having been off computer for several days. This story is tearing me up but at the same time, it is teaching me so much about courage and love. Your advice about smiling at a bald child and looking the parent in the eye is so helpful to me. Thank you. Your line, Be aware that you are looking at greatness, is the most important thing I have read in a long time. I wish everyone could read it. I think that is what I saw the first time I looked at Donna's photo. And it is what I continue to see in addition to her beauty and sweetness and light. Much love.

  • In reply to Terry Hartley:

    Thank you, Terry. Your words mean my effort is working.

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    They say God never hands you more than you can handle,sometimes you have to wish that He didn't trust us so much.I admire your strength, all of you,in this trial.My family and I are going through a similar situation.My younger brother,age 35,was recently diagnosed with Myeloma, a rare bone marrow cancer.The prognosis is grim.They say he has ,at best,3 yrs.35 with 3 young,beautiful,children and a loving wife of 10 yrs.Hes to young to have such an ugly disease.I could not imagine going through this with a child,I am a selfish person I guess,but I want my brother to outlive me.I don't know if you have heard this or not but here it is:vitamin B17,apricot seeds,please research them if you haven't already.Its amazing the stories of success.Unfortunately for us,the protien in this erases this option for my brother.But I happily pass it on to someone who may benefit from it greatly.My heart goes out to you all and you are an awsome inspiration.Please give Donna hugs for all of us!!!

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