09/16/2012 05:02 pm ET Updated Dec 06, 2017

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.


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 3 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.


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 3.

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 of what 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.


Tomorrow: Surgery 3.0

Read All Of Donna's Cancer Story Here