Donna's Cancer Story: Chemo 2.0

This is the twentieth 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.

Mary Tyler Dad and I were walking a fence this month, and at any moment we could drop.  On one side of the fence was terror, despair, anger, bitterness.  On the other side was love, hope, Donna.  We chose Donna, we chose hope, we chose love.  This is not to say we didn't flirt with the dark side, or come to know, intimately, what living life in fear was like, but we chose to believe that all things were possible.  We chose to hope that Donna would grow up.  We chose to let Donna guide us to a life that was richer and deeper and more beautiful.  

Donna in stripes

(photo courtesy of Anne L. Geissinger, Pixeldust & More)

When I would pick Donna up from her babysitters, she never failed to look up at the late autumn sky, "Mama, what a beautiful night!"  In the morning, it was, "What a great day to fly a kite!"  The life in her was simply infectious.  Being with her was the only balm for the fear that could so easily take hold of us in her absence.  She demanded that you see and enjoy the world we lived in.  This tiny, mighty creature was a powerful force of calm for us.    

Despite Mary Tyler Dad and I struggling, honest to God struggling this month, Donna was thriving.  On the outside.  On the inside, in her head, just underneath her skull near the lining of the dura, behind her left ear, her tumor was also thriving. 

Blanket Donna

(photo courtesy of Anne L. Geissinger, Pixeldust & More)

At the beginning of this month the chemo protocol selected involved an antiogenic paired with a more traditional chemotherapy.  The function of the antiogenic (Avastin) was to cut off blood supply to the tumor, which had always been particularly vascular, to prevent growth, and the chemotherapy (Irinotecan) would follow behind to shrink and kill the tumor.  The cocktail was to be administered in Day Hospital intravenously through Donna's port on a bi-weekly basis.  There were side effects with these drugs, but very minimal compared to the earlier inpatient protocol of the previous year. 

Donna would not lose her hair (hooray!), nor would her blood levels tank, requiring few, if any, transfusions, and it involved six hours in clinic/day hospital every couple of weeks.  A piece of cake, relatively speaking.  To measure its efficacy, the docs had determined scans would occur three weeks after the first dose was administered.  Shrinkage, stability, or growth under 25% would be considered a success and the treatment would continue. 

I felt very at peace with this plan as I had had a dream just a few nights after learning of this latest relapse.  I awoke about 3am, shook Mary Tyler Dad up from his sleep with my dream knowledge that we must "choke the beast."  It felt so certain.  I am not a scientist or an oncologist, but this dream delivered the idea to me that the way to beat Donna's tumor was to cut off its blood supply, to choke it.  We had tried cutting it (surgery) and poisoning it (chemo) and cooking it (radiation), all without success.  Choking it was the way to go.  I was certain, and that certainty bought me some peace. 

In typical cancer sucks style, those first scans showed growth in the brain tumor of 25-30% with a stable spine.  Oy vey.  So much for my prescience.  It took almost two weeks of consideration before we learned that we would push forward with this protocol, despite the growth.  Surgery remained off the table, as our neurosurgeon was uncomfortable with the direction of growth of the tumor and it's proximity to an area in the brain that controls speech and comprehension.  God, do I hate cancer. 

Pensive Donna

(photo courtesy of Anne L. Geissinger, Pixeldust & More)

There is a clarity to life when so much is at stake.  I've no doubt that death row inmates have felt something similar.  Mary Tyler Dad and I worked to maintain a routine and normalcy for Donna so as not to upset her sense of security.  I continued to work three days a week.  Mary Tyler Dad kept his full schedule.  With the help of family, we cooked and cleaned and maintained a home.  Donna was disciplined and boundaries were drawn.  She knew there were expectations for her and we held her to the standards we would hold our child who was not in treatment for cancer.  Donna needed that.  We did, too. 

Despite the chaos that cancer rained down on us, we worked hard to never treat Donna as a sick child.  She looked older, was growing taller, and had fully morphed from toddler to young child.  She was a joy and easy to parent.  Once, after his check up to ensure Donna's brain wasn't swelling from the drugs, our oncologist asked her, "How is it that you are as sweet as you are?"  Donna considered that question a moment, turned to look at me, and responded, "Because I love my Mommy and Daddy so much."  The doc and I both took a moment to pick our hearts up off the floor and wipe the tears from our eyes.   

Again, you see the disconnect between the photos of Donna taken during this month and the reality of our lives.  I think our instincts were guiding us to make good and sound parenting decisions.  The first three photos were taken by a close friend who captured Donna in her many facets -- her shyness, her joy, her coyness, her beauty.   

These next two are simple snapshots.  There's nothing like a little mortality scare to get you to try and capture every moment you can.  The first is taken just before weekly dance class.  Look how her eyes shine.  She was lit from within, my girl.  That is a crocheted spider on Donna's hair clip and it was the only hair clip she would wear.  Oh, the money I wasted buying cute bows and ribbons.  Donna was simply not that type of girl.  No fuss, no muss; she didn't need any adornments.  

Dancing Donna

This next photo is one of my all time favorites.  It was taken Halloween day, 2008.  Donna had been fickle with her costume choices, but early the day of, settled on being a "Fairy Flower."  Huh.  I got to work and with some scissors, staples, and love, came up with what you see.   The day was brilliant perfection.  It was warm and mild.  There isn't a lot of Halloween action in our neighborhood, so we went north to Evanston to trick-or-treat with friends.  Donna had a blast.  She was bopping along from house to house, hoarding candy she would never eat (Donna never had much of a sweet tooth), surrounded by those that loved her most, and dressed as a Fairy Flower.  Life does not get any better. 

Donna as Fairy Flower

Tomorrow:  The North Pole

 

Comments

Leave a comment
  • Every night at bedtime, my boys and I talk about things that we're grateful for. We each say three things, no matter how big or small. It is really important to me and my fiance' that they grow up with a sense of gratitude. There's nothing worse in life than taking even the smallest things for granted.

    I admire you for always seeing the bigger picture, even when it was difficult for you. I don't know that I could be as strong, or able to see past a child's illness, to just keep things as normal as possible.
    You did it with grace. It seems like you made sure the little things were tended to, even if that meant making the perfect costume for your little "fairy flower" and being sure she had the hair bows that she liked. It's amazing the things we do for our children.

    Last night, and one other night before, I said that I was grateful for Donna. And of course, my boys asked me who Donna is, and I told them.
    I told them that she was an amazing, beautiful, happy little girl who was taken from the world way too soon because she was very sick.
    I said that I was grateful for Donna because she reminds me that I should see beauty in everything and that there's always something to smile about.
    She has taught me things about life that I couldn't have imagined a child that I've never even met could teach me. She also reminds me that I should hug my boys as often as possible and never take anything for granted. I need to appreciate even the bad stuff that comes with having kids, because to enjoy all of the beauty and joy that kids bring into our lives, we must also deal with the downside. Without darkness, we wouldn't know light.

    Donna is a light in my world, and I thank you for sharing her story.
    Your little girl has changed me. Your words have changed me.
    Love and light to you. Blessed be.

  • All pictures of Donna make me smile from ear to ear - she exudes the light from within that you speak of, a testament to the love you and Mary Tyler Dad brought to her.

  • fb_avatar

    I just want to kiss that beautiful girls cheeks. What a treasure she is.

    Every night since I have started reading these, I take an extra second out of my day to give another smooch, another hug, or an extra push on the swings to my three kids. Cancer sucks, for sure...but you give the fight a beautiful voice.

  • I am speechless from the beauty of your writing and the beauty of your little girl

  • I came here from your CaringBridge site, so Donna's basic story isn't new to me. I am yet again entranced by your amazing, special girl and how strong and sweet she was. The pictures of her pain yet warm my heart and I am torn between loving getting to know her again and hating knowing the true outcome of this story.

    I doubt this makes much sense but it's my feelings reading today's entry. Donna lives through your writing and that is something very special.

  • fb_avatar

    I wish I could put into words the way I feel when I read your blog. I have a 3 year old son and I have MS. People always tell me I do not see how you can do it and I always say it could be so much worse. I feel happy, sad, and angry everytime I read your blog you and your husband are wonderful people. I of course have made peace with the fact that she had to have passed and is now an angel in heaven with all the other children in her black tu tu and spider barette.

  • fb_avatar

    I have read the complete chronicle until this day and I am waiting with bated breath to read your eloquent journal of events. I am so saddened to see what a horrific beast has done to such a beautiful little miracle. I am an Oncology, RN and have found what you have written here truly inspiring. It is not often that you get to hear a story, so candidly, from the other side. You, your husband, Donna and your family are some of the strongest people that I have had the pleasure to 'meet'. Your ability to take her story and share it so that all can understand the darkest moments and the highest moments truly exemplifies beauty. Thank you for sharing and making her story one that I am sure others will use as strength during a time that they might be creating their own.....

    oh and I agree, Donna definitely is the coolest person i know.....

Leave a comment