Donna's Cancer Story: Terminal

This is the twenty-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 cancer treatment. 

Tiny Dancer

(All photos courtesy of Joel Wanek, Joel Wanek Photography)

In her last week of treatment, a lump was detected in Donna's neck by the staff at the proton beam radiation center.  At the end of her morning treatment, I was called back to the recovery room, just as I was every day.  Greeting me, standing over a still sedated Donna, was one of the medical directors.  Oh, no, I thought, what is this?  There was no suspense involved,  "I see a lump in her neck and it is suspicious for tumor," he said.  Just like that.  The pit that exists in every Cancer Parent's gut grew from a pea to a watermelon for me within moments.  I had seen the lump in question in passing the night before.  Donna was in our room with her playmate and I was walking out into the hall when I turned around to say goodbye and saw it.  A fear flashed in me, but Donna's neck turned and it was gone.

Except it wasn't gone.  It was there and it was suspicious for tumor.   I knew it.  I felt it.  It seemed impossible, as we had had clean scans just fifteen days prior, but cancer knows no boundaries.  It does what it wants when it wants.  True fact.  The suggestion was made to head over to the local hospital for an MRI.  One of Donna's sedating doctors who had treated her previously was there and had generously agreed to stick around and sedate her for the scan.  We could take her right away.  A dual sedation is never recommended by medical professionals, that's why Donna had her picc line inserted without it, but in dire cases, you do what needs doing.  Clearly, this was a dire case. 

I called Mary Tyler Dad at home in Chicago and caught him on his way out the door.  He drove directly to Bloomington to meet us at the hospital.  He made record time.  I felt terror.  If you have not felt terror, you don't ever want to, and if you have felt it, you know precisely what I mean.  Images seem to work better than words, so you can think of it as a swirling, growing, angry hurricane of hell in the middle of your gut.  You are powerless. 

Thankfully, Auntie was with us and came to the hospital.  I don't remember getting there.  I do remember registering.  Sitting with my family in a waiting room, such a benign, innocuous space.  I don't remember my children there.  I remember my sister and her knitting bag resting on a chair.  I remember bringing Donna into the MRI room, but not dressing her in a gown or her being re-sedated.  I remember the kind face of the doctor who had sedated Donna numerous times at MPRI.  I remember sitting in the cafeteria with a turkey sandwich in front of me, but not how I got there or how it got there.  I remember Mary Tyler Son wailing, and me not being able to hold or comfort him.  I remember Mary Tyler Dad finding me and holding me.  I remember splitting the sandwich and it tasting like lead fabric.

The scans were complete and we all joined Donna in the recovery room.  She was hungry and ate french toast sticks and syrup.  We were both sticky as she was sitting on my lap.  We were discharged and a friendly nurse wheeled me and Donna out the door to the car, "Hospital policy," she cheerfully remarked.  In the car on the ride home, we heard from Donna's doctor in Bloomington that the lymph node was not attached to tumor.  It could be cancerous, but it was not the tumor we had been treating.  That brought comfort.  The plan was to finish out the week and follow-up with our team at Children's in Chicago.  This put a pall on our last week of treatment and our remaining time at Jill's House.  Of course, it did.  For Donna's sake, we worked hard to focus on what she had accomplished.  53 proton beam radiation treatments spread out over twelve weeks.  We had lapped every other guest at Jill's House.  All our neighbors had moved on and back home. 

Donna's going away party was lovely.  Our closest friends, the manager and her children that lived onsite, were there and kept us from jumping off a cliff.  There was pizza and decorations and a dance party.  Oh yes, a dance party.  I have such a beautiful sense of that last evening, spent in the company of dozens of people affected by cancer.  Some young, some old.  We all danced together.  We put bean bags on our heads and pretended to be sleeping fish.  All of us.  You have not fully lived until you have danced with young and old alike. 

Obituary Photo 

We got home late on a Tuesday night.  On Wednesday morning we headed to Children's to meet with Donna's oncologist.  Within minutes it was clear that there was concern.  It was confirmed by the look in Dr. Stew's eyes.  He is an outstanding human being, that man, but he does not have a poker face.  We met with a surgeon and had a CT scan of Donna's lungs.  In hospital time, those things take days or weeks to schedule.  Unless your daughter is dying.  Then, it is mere minutes.  After the scans, we were sent home to await the results.  I dropped Mary Tyler Dad at home with the kids and went along to the grocery store.  We weren't even home long enough to get milk and bread before the call came.  Donna's lungs were covered with lesions, her lymph nodes were full of cancer.

I got the call driving down Touhy Avenue, the milk and bread in the trunk.  I had to pull over.  It was Mary Tyler Dad who called me.  I called Dr. Stew immediately.  There was nothing to be done.  The forecast called for a good summer, possibly fall, but Donna would die.  It was the first week of June. 

The plan was to put Donna on an oral chemo that could eek out several more months, we hoped.  She was completely asymptomatic, so preserving time was the goal.  If the oral chemo was easy enough for Donna to tolerate and had the chance of extending her life by weeks to months, we decided it was worth it.  No more hospital stays.  No more scans.  The cancer would run its course, but with Donna living so vitally, we wanted to prolong that as long as possible.  Dear Donna.  My daughter was dying of cancer and to look at her was a total disconnect.  Dr. Stew had said once of her, "She may have a brain tumor, but she is not a sick child."  He nailed it with that statement.  Donna had lived with cancer since she was twenty months old, but it never prevented her from growing, learning, developing, being a child.  That was one of our blessings. 

I wrote at the time:

"Today, right now, she is not suffering.  She is chatty, hungry, silly, thoughtful, playing catch and riding her tricycle.  Two years ago this week, when it was first learned that Donna's cancer might have spread to her lungs, we had a prognosis of 2-3 months.  If someone had said on that day that Donna will survive two years plus I would have thanked my lucky stars.  Now that that time has passed, I remain grateful, but hurt in my bones that more can not seemingly be done to right the terrible wrong which grows inside her.  It is so wrong to lose a light this bright, a girl this loving, a daughter and granddaughter and cousin and friend, and sassy willful wonder.  I ache.  We ache.  But there is not a lot of time to ache right now as Donna still thrives.  We must connect to that while we can." 

And so we tried.  Her VP-16 was disguised in pudding and her Temodar was disguised in ice cream.  These are meds that an adult would swallow in pill form, but Donna was too young for that.  Instead, I put on blue rubber gloves to protect my skin from the poison I stirred into her pudding and ice cream.  God help me.  Donna would sit on her Daddy's lap and we would all resign ourselves, the three of us, to what was done in the name of preserving the life she had in her.  Like most young children, Donna did as she was told.  It is heart wrenching to spoon feed your daughter poison that you know, at its optimum, will provide a few more weeks to her cruelly young life.  But that is precisely what we did.  A wise RN told us early in that if we let her, Donna would be our guide.  We let her, and it was clear to us that Donna wanted to be with us still, despite the injustices of a mother and father spoon feeding her poison laced ice cream and pudding.  Seconds after the last spoonful, Donna would pop up and out of her Dad's lap and race to the kitchen room or play room or to her brother.  Yes, she was our guide.

Several weeks later, Donna danced in her studio's annual dance recital.  It was Father's Day.  Her hair had started to thin, she would lose it again, we knew, and some low grade fevers from the chemo had started.  Donna had practiced her dances throughout her time in Bloomington.  When we returned, she joined her classes again.  Her teacher and studio could not have treated us with more kindness, sensitivity, or love.  Donna and Mary Tyler Dad were given private lessons to perform with some others in the Daddy-Daughter Dance.  It was Donna's favorite.  The studio director made certain to accommodate Donna on this day with the knowledge that she would never dance publicly again.  We had reserved seats in the audience.  We got to watch a dress rehearsal so we could see Donna on stage more than once.  A professional photographer was brought in to capture the day for us.  All of this was discrete.  My guess is that the folks in that audience who knew Donna was dying were sitting in the row reserved for our family.  We remain grateful for this beautiful gift of a day where Donna was just another girl, nervous to dance in her first recital.  

Blues Brothers 

Somehow we sat in that audience of over 500 proud and happy parents and we watched our girl, knowing she would leave this world much too damn soon.  Somehow we didn't wail or convulse or vomit.  Somehow we kept this news to ourselves, stifiling the urge to yell and scream and rail at a universe that could be so cruel.  Somehow Mary Tyler Dad performed with Donna, his Father's Day gift that must last a lifetime.  Somehow you're still reading this note.  Somehow I'm still here to write it.  Somehow my beautiful Donna is not with me.

Tomorrow:  The Bubble

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    No words. God bless that precious girl.

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    My heart goes out to you.

  • and somehow I am crying. Deep, racking sobs. I am so glad that the dance studio made that day memorable for all of you.

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    I love the pictures of Donna. So beautiful.

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    After reading your story every day, I can't imagine a more heart-breaking moment than today's post, barring, of course, what I know is coming. I know that while Donna's life was short, God sent her into your lives for a reason. My heart goes out to your family, the physical and the virtual. Thank you for sharing the light that Donna brought into your life with all of us. God bless the Mary Tyler Family. xx

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    Thank you for sharing the beauty of your Donna. So much more I want to say, but can't find the words.... Thank you.

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    I know it is only by sheer love that you walk in the sunshine again. I've read Donna's story from the beginning, and I felt an ache reading your words, but today, today I sobbed for you and your beautiful family. Thank you so much for sharing.

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    The only words I seem to be able to find, as my hands hover above the keyboard, are simply Thank You! Thank you for having the strength and the courage to share this story each day. Thank you for sharing the pictures. I feel a deep sense of, I'm not sure of the right word, but I think it's honored, that you have shared all of these wonderful pictures to go with this heartbreaking, yet somehow inspirational story! Thank You!

  • I am so moved, every day, by your posts about Donna. Your story is so important - thank you for sharing it.

  • Keeping you in my thoughts today (as I did for the past month).

    Your writing is so powerful. Thank you.

  • I don't know what to say! I'm a father of two girls I could not imagine I had to take three brakes from reading this story because I couldn't see the words with the tears in my eyes. I'm Sorry...

  • Thank you for all you share. What a beautiful child inside and out. No poison could ever blow out the light that shone from within her and still exists in spirit.

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    I'm speechless....I've imagined this but cannot truly imagine the pain you have gone thru. Thank you for continuing to write & for sharing Donna and her beautiful life with us. I'm so sorry that she's gone...way, way, way too soon.

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    No, no, no! I only read the title and not the article yet. I don't know Donnas story outside of this blog and now I'm scared to continue reading. I am so sorry and heartbroken. :(

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    As I read this..I get so mad...I wanna scream, leave this child alone...I am in awe of you and your family and how you seem to hold it all together...my heart aches for you and all that you and your family has had to deal with...I admire you, and how strong you are..even when you don't want to be...you are.

  • As I was running my normal route in the neighborhood the other day, I found myself thinking of Donna which seems to happen to me often since I've been following your posts every day (even while on vacation!) Though it may seem odd to randomly think of someone you have never personally met, but I'm secure with knowing that my thoughts are being consumed by someone who I consider a hero. Your writing is wonderful and I wanted to thank you for sharing your inspirational story with all of us. You are amazing.

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    I'm still reading.

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    Heartbreaking and beautiful. Thank you for continuing to share your story.

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    Your story is heart wrenching. Donna is so blessed to have you and her dad in her short life. I will go home tonight and squeeze my 10,8 and 3 year old a little more tighter. Thank you for sharing this beautiful story.... God bless you and God bless Donna.

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    There are no words. I love and hate every word you're writing ... love the story, the compassion, the humanity, the beauty, the innocence ... hate the heartbreak, the injustices, the inadequacies of medicine. I was introduced (and am forever grateful) by Susannah at http://needhamcrew.blogspot.com to your determination to honor Donna during Childhood Cancer Awareness.

    As a mom of four, your story scares every cell in my body. As a woman, I am in awe of you and everything you've written, shared and uncovered.

    Truth be told, I do not want to keep reading. I want to stop. I want a new ending. I want Donna. But, I will keep reading, I will tell others to start reading. I will feel this pain in hopes to help anyone be spared in the future.

    Donna had the most amazing witness to her life -- you. You blessed her, deeply. And, this honors her in every way.

    Humbly.

    Marian

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    I probably shouldn't read more yet I'm still hopeful. Hopeful for Donna and hopeful for my son. Every time he gets scanned I fear the words "too many" or "inoperable". Thank you for sharing your story to those who don't understand. I look at the funding for pediatric cancer research and it's abysmal. I hope that those reading realize that funding from the government is only 200 million dollars and drug companies are not willing to develop new pediatric cancer therapies because there aren't enough children with cancer to make it profitable (sick, isn't it?). It's mostly private dollars/ donations that are making research happen and many children right now are being turned away from trials because there's not enough money.

  • Donna you are my hero!

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    I love your little Donna so much. Such a strong little girl. Such an amazing little girl. I am so sad to read this post. But so honored to get to see a glimpse into the beautiful soul that is Donna. My heart aches for you as a fellow bereaved Mommy. Bless you and your family and especially that beautiful, magnetic, charming little Donna. She has captured my heart so much. Thank you for sharing her with all of us. She is a very special little girl.

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    Love that you are sharing this story but hate the ending! Thanks

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    Love and fear. Deathly fear. Every day this month has left me clutching my 13 month old son and praying hard. It was put so eloquently on another blog about how we will be grieving Donna and then we will move on to our own families and our own lives and you will be left to live every day, but that simply won't be true for me. Donna will always be in my heart and thoughts. Mary Tyler Dad and Son will always be in my thoughts. And you will always be in my thoughts. The impact that your telling of Donna's story will be permanent on my life.

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    Thank you so much for sharing your story with all of us. I am a Chicago mom of 5 and former Oncology nurse and current home Hospice nurse. Being a mom and with my work background, I was drawn to your story and feel as though Donna and your family are part of our family. My five year old twins are always looking over my shoulder when I am on the computer, and saw Donna's picture and asked who she was. I explained to them Donna's story. Amie (who always has something to say about everything) looked at me sadly and said "I wish I could have been friends with Donna". Holding back tears, I told her I wish she could have been, too. I wish you and your family peace, and please know from this Chicago mom, it has made a great impact here.

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    Not sure if you have recieved a post I sent awhile back. I miss your daughter. They are angels from heaven. Not knowing how long will have them, or they will have us. She's a beautiful little girl. I can't talk in present tense. I wanted you to have her forever. I didn't get to read everyday, but the days I have. I have tears in my eyes and my heart goes out to you. Well thank you for writing your families story. Have a bless day.

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    Thank you for sharing this beautiful story. I have also lived "this life" with my son. As I read your words, I could relate and "feel" your pain. Today's entry really hit home and brought back so many memories. It has been 3 years, 1 month, and 8 days today ~ and we all miss him like crazy. Thank you for bringing awareness and sharing this journey. Bless you all~

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    Thank you for putting words to this journey. I know it allhr too well. I have related everything you have written to my story. My story is the same - but different. My daughter was a teenager when she was diagnosed, so we had to talk about it. She relapsed and had a less than 10% chance of survival, developed a fungal infection, and had sky scraper hurdles to get to a BMT. I too learned how to Live by spending months on a pediatric oncology floor with my child. My story is different though because Hannah survived. Too many friends did not. I add Donna, who I have come to know through you, to my daily thoughts of those who did not survive, but knew better than anyone how to Live. I am a better person because of these amazing kids. Thank you for sharing your family's story so others can have a glimpse into this world.

  • Thank you so much for sharing your journey. I love the fact that you saw Donna as your guide. Acceptance.
    After all is said and written I think you will help and heal more people than you'd ever imagine.
    I look forward to reading the rest of your journey.

    Love and light,

    Margie

  • I have been reading Donna' story from the beginning and look forward to reading the next entry. I think it is amazing how Donna guided you and reminded us all that kids with cancer are still KIDS. Thank you for sharing Donna's story. It is truly a love story and one I will never forget.

  • I keep photos of our little loved ones on the refrigerator; nephews, neices, cousins. Donna's photo is now among them (the one from this post with her purple sleeve and strawberry tattoo.) I hope you don't mind. But I have fallen in love with her.
    My oldest boy, Augie, was born just four months before Donna. When he asks who she is, I will simply tell him that she's one of the strongest, bravest, and most beautiful girls I have ever heard of. And when he's old enough, I will share her story. I hope she will be one of his heroes. She's one of mine. Thank you for sharing her with us.

  • I have so enjoyed getting to know your precious Donna! As I read this post today I lost it... I thank you for sharing this process with us. I'm encouraged to live each day fully and not sweat the small stuff, to be thankful in all things, and to love my girls fully!!

  • It will be great if I can contribute in some way.

    Larisa Callaghan

  • I've only known Donna through the words that you've shared and while I have absolutely no idea what you're going through, I know that Donna was a light. She is a girl I wish I could have shared time with and gotten to know and because of your courage to share your story this month, I'm allowed that privilege. Thank you for that. While I was hoping this post wasn't where Donna's story would go, I know that Donna's story was meant to be shared.

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    I've been dreading this day for 26 days. Nothing else I am feeling has words, only tears. For you to tell her story, your story, Mary Tyler Dads story, Mary Tyler sons story, in such an expressive way that has drawn a picture that is clear and concise is so beautifully uplifting and sad. Thank you. Thank you.

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    MTM, thank you so much for having a heart open enough to share your story & your daughter with us. She is a beautiful angle watching over all of us right now, tough as nails, as delicate as tissue paper. But her heart shines through. So many adults won't humble themselves to be guided by a child,but you & your family did, and by sharing Donna's journey with us, hopefully we'll all be smart enough to learn from the children in our lives. Donna has taught me so much, even in the fall of 2011. Thank you so much for giving me and everyone else the gift of Donna's optimism, tenacity, vulnerability and love.

  • Yeah sitting in a police station office with tears streaming down my face is probably not the most career forwarding move. Alas my home computer has gone kaput and I am reading from work.

    Donna is worth the ribbing I am going to get though. I am still reading. I am still here.

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    My husband and I read this together and both of us were in tears. You and your family are so special!

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    I have read Donna's story from the beginning and I can't stop thinking about it. Last night I wept reading Terminal. We do what we have to do, for ourselves, for our families, and you for your Donna. The world keeps spinning and yet you stand still, never forgetting. It's so...hard. I sit here and think that I would never have the strength and courage that you had to have...yes, HAD to have. Thank you so much for sharing Donna's story. I feel compelled to help other children like Donna, because of Donna.

  • I wanted you that as I ran last night (last 20 miler for me before the Chicago Marathon), I thought of Donna. It was a tough run but thinking of her made it easier. How I wish the universe had spared her. I thought of what she must have endured at such a young age. What a little soldier. I used to work at CMH and had a pretty demanding position, including long hours. I stayed as long as I did for such a paltry wage because I believed in the mission. It was the only place I ever worked that I felt so passionate about the mission. On bad days, I'd walk over to the hospital and hang out on the Oncology floor for a while and play with the kids. That would put things in perspective and I would head back to work with extra determination, reminded why I worked where I did. We worked so hard to raise funds for these very kids.

  • In reply to Wllflwr:

    Thank you for what you did. I want you to kick ass on that marathon. Remember, while running, that you are a sexy rockstar. That's what I always shout to the runners as they pass. Good luck!

  • I've been reading throughout the month, and can only say this: Thank you for sharing your extraordinary little girl with us. What an absolute treasure.

  • Your beautiful daughter left a lifetime of memories in her short little life. Clearly, she was very special. Thanks for sharing and parenting her this way.

  • With tears running down my face, my son is asking why I am reading this sad story. The only answer is, "Because I am a mom and I have to." Your generosity to share your story of your beloved Donna is awesome. I will always remember your strength and her incredible spirit.

  • So terribly, horribly heart-wrenching. I too lost my darling daughter less than a year ago, when she was barely 3 years old. The fact that you are able to articulate your story in such a beautiful, honest and meaningful way gives me hope that I too may one day find the courage to tell my daughter's story, and maybe even integrate it into my own life story. For what it may be worth, I do understand the total, pure anguish and terror you described. The word that came to mind in my situation was "bereft". I admire you tremendously for continuing to forge ahead. It takes a huge amount of strength to do that, and even if you would have preferred to never been forced by circumstance to discover that you had it, my hat goes off to you.

  • Thank you for sharing your beautiful Donna with all of ugr. Donna is beautiful and MTM, MTD, MTS are amazing.!!!

  • My stomach is in knots reading this, knowing that it is just a tiny fraction of what you felt that day. Thank you for sharing this.

  • im 15. i just sobbed reading the last part of this article because every year i perform in my dance studios recital and sometimes it falls on fathers day. i would also like to let you know that your writing is beautiful and Donna seems like a wonderful person. god bless.

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