Donna's Cancer Story: Relapse 2.0

This is the sixteenth 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 and Da

My Dad is very fond of saying, "Don't worry about a thing, nothing will come out all right."  Melancholy words from an old man sad about the death of his wife and the cancer of his granddaughter, both named Donna, both with brain tumors. 

Just as we were getting comfortable with a new routine, we all got suckerpunched in the form of an MRI.  On the first day of this month a small spot appeared at the original site of Donna's tumor that was read as "worrisome."  No one would officially call it tumor, but the recommendation was to re-scan in 4-6 weeks.  Within days, that was cut to under four weeks, as Dr. Stew grew more concerned.  No one wanted the beast to have an opportunity to spread.  If this was a relapse, the strategy was to catch it early. 

Waiting is its own form of hell.  And when you are charged with waiting you know that your life will take on an unbearable quality.  Everything around you becomes a more intense version of itself.  The sky is bluer, the clouds puffier, the flowers more brilliant -- the appreciation becomes burdensome.  Except with Donna.  Her smiles were more tender, her kisses sweeter, her words more profound.  You want to capture everything and commit it to eternity.  Just in case. 

These were the days when reading three books before bed became an exercise in willing myself not to cry, not to lose it in front of Donna  It is amazing how profound children's books become when you think your child is not long for this world:  "It's time for bed, little mouse, little mouse, darkness is falling all over the house.  It's time to sleep little deer, little deer, the very last kiss is almost here."  Mem Fox wrote those words and their beauty cut me like a knife.  I would read to Donna in these weeks and my voice and lips would quiver and I would pinch myself, hard, so that I did not fail her in those moments. 

Donna was just as she had been -- amazing.  She got another blood transfusion this month, still not completely recovered from the stem cell transplant, but day-to-day she was perfect.  Funny, sassy, clever, bright, singing, dancing, eating.  She felt good, which was a blessing, but a disconnect.  Donna felt good, great even, but we knew different.  We knew she was headed back into the mouth of the beast.  How does a parent erase that knowledge, that fear?

In the midst of all of this, becasuse cancer is a rude beast, we were planning a Christmas in July 3rd birthday extravaganza.  Donna had missed Christmas last year with the stem cell transplant and her 2nd birthday was squeezed in between moving and chemo rounds.  We wanted three to be different and saw it as an opportunity to say thank you to all our friends and family who had been supporting us so completely. Santa and his elves got busy in our home and there were decorations, cookies, a tree, and a gift for each kid that made it to the party. 

Christmas in July

Donna, the least acquisitive kid I've ever met, asked for flowers and a cake for her birthday.  Donna, you see, was amazing. 

Two days before her birthday, a repeat MRI confirmed the tumor had returned.  The day before her birthday she had a spinal MRI and the day after, bright and early, was a lumbar puncture and bone marrow aspiration.  The docs needed to stage the disease, yet again, to determine if it had spread.  More waiting.  This was no way for a girl to turn three. 

Despite that, Donna's birthday was beautiful.  Somehow we managed to banish the fear and celebrate her life, celebrate her still being with us.  Our home was filled to capacity with family and kids and the loveliest assortment of friends from Cancerville and our lives before cancer.  The kids that weren't too fearful to see Santa were treated to my Dad in a hot, furry suit in the middle of July.  Donna, too, was afraid, but relaxed when she realized it was her Da. 

Inevitably, some folks approached us with the sad smile and tilted head, "How are you?"  Cancer Parents know what of I speak.  That question was not allowed on Donna's birthday.  The tilted head is the classic posture of pity and I could not handle pity when it was all I could do to stand up.  I hated the tilted head and found myself mimicking it to see if the folks tilting their own heads would be aware of my tilt and straighten theirs in response.  That worked about 50% of the time.

In this same week, we learned that there were concerns about Mary Tyler Son growing in my belly.  My bloodwork was off and they were recommending an amniocentisis as the presence of Down's Syndrome was feared.  This raised a whole host of other issues, but one thing we knew after so much waiting with Donna, was that we could not wonder for six more months if the child I was growing would have Down's Syndrome.  On the day Donna's relapse was confirmed, just minutes later, our phone rang again.  It was Northwestern calling with test results.  The baby was healthy.  Did I want to know it's gender?  No, thank you, I said.  I hung up the phone and I wept.  And wept.  And wept.  Babies are so hopeful, the perfect bundle of potential.  Ours was healthy.  We hoped the same for Donna. 

Birthday Girl

Tomorrow:  Surgery 3.0

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    Mary Tyler Mom,
    I want to thank you for sharing Donna's story with us.
    I have a daughter who will turn 1 on October 1st. She is the love of my life. Every day I get to wake up and see her smile. Smell the sweet scent of her skin. Count my lucky stars that she is so beautiful and healthy. I am blessed.
    While Donna's story is heartbreaking, it is undeniably breathtaking. Cancer has touched my life a few times this year, and while I do not like to use the word 'hate', I hate the awful beast that it is.
    I log in every day to share your journey. Your daughter's smile lights me up, while the pain that radiates from your word make me weep. If nothing else, please know that there's a woman in MA who thinks of your family, of your daughter, daily and will continue to long after your story is done.
    May God bless you and your family and Donna's star shine bright in the sky for eternity.

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    It's so hard to find the right words to describe how reading Donna's story has made me feel. She is inspiring, brave, innocent, and will forever help me realize how short and precious life really is.
    You have brought all of us readers into your life and your family and we will forever be grateful for this. For all of the tears that I shed for you, your family, and Donna, are tears that keep me focused and remembering the small things are what really matters. The smiles, the laughs, the hugs, the kisses, and even the tantrums and stubbornness.
    Thank you. You have brought Donna into all of our lives. And because of little Donna, we have stopped taking life for granted and have started appreciating it again.
    You and your family are in my thoughts and forever in my prayers. God bless.

  • For those who pity you, I ask - Why? You are writing a beautiful testimonial of love and courage, showing the world how blessed you are to have brought this spectacular child into the world. And spectacular she is - I cannot stop looking at and reading about Donna and her amazing parents.

    I don't know if this will help you but a few years ago, a little girl who was very precious to us and whom we thought we were going to adopt was reunified with her birth mother after 13 months of living with us. I saw a counselor to help me through my grief - and I told him how very much I missed holding her, hugging, nurturing her, parenting her. The counselor said something that made a lot of sense and helped me cope with that loss. He said, "the way you parent a child changes even when they physically live with you throughout their childhood. Take my 15 year old son. Gone is the little boy who used to snuggle up to me and want me to read him bedtime stories. Now the best I can do is be there for him, to guide him when he needs me and is not out playing soccer or talking with his friends. Similarly, with Nina, you now have to parent her in non-physical ways, like writing about her, praying for her well-being, etc."

    I think you have chosen a wonderful way to continue to parent Donna. Among the many, many people who love and support you, please count this family in San Diego.

  • This story is amazing. You tell it with brilliance and brutal honesty. My father has a version of the saying you quoted from your father at the beginning of the story, "Don't worry about a thing, nothin's gonna be alright." (Must be a Chicago thing) That saying oddly carried me through my daughter's diagnosis of Agenesis of the Corpus Callosum (ACC), basically, she's missing the bundle of nerves and tissue connecting the two halves of the brain. Your daughter is gorgeous and your strength is amazing. While it must be heart-wrenching to write every column, and maybe because of that, your love for her comes through in every word. Best wishes to you and yours, you are an inspiration to mothers of children with all types of diseases, conditions, and abilities.

  • Thank you so much for sharing your Donna with us. What an amazing little child she is. I'm constantly amazed at how wise and intuitive children are. I think that they are our salvation.
    I worked as a nurse in the Bone Marrow Transplant (BMT) unit for 5 years. I both loved and hated it. I loved it because it gave me a chance to really get to know and help my patients as they would be on the unit for at least 4-6 weeks; but I hated it because I was a firsthand witness to the destruction that cancer brings to the patients and their families. It's hard to be there, thinking that as a nurse you should be able to help people more, comfort them more...and you can't.
    As a nurse, people tell you remarkable things. Things they don't tell their families. Things they've never told ANYONE. It is a blessing to be a nurse. I had to leave BMT because I had a (another) major depressive episode and simply could not watch another friend go through the intensive chemotherapy, the radiation, or the side effects of either.
    I miss that deep connection with patients, but I don't miss that old beast cancer. Reading your series about your sweet Donna reminds me of the good times on BMT. And I have cried many tears on her behalf too.
    God bless you, Mary Tyler Mom, and your family. And all the other Cancer Parents and Children. Please know that we nurses love you.

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