This is the fourteenth 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.
When you go through cancer treatment with your child, you meet some of the best people you will ever know. The oncologist who cared for Donna is a man that to this day I want to sit across from in a bar and talk about what he does for a living. His work is sacred and difficult and heart breaking and life affirming and joyous all at the same time. On any given day he might lose a patient, but save another, or several even. You hear about those with jobs that are life and death — police officers and fire fighters and soldiers. Add pediatric oncologist to that list. Stew is my hero. He wears silly ties and sings while walking down the hall and he does this without affect, or being ridiculous. I respect him immensely.
The nurses we worked with are some other ridiculously gifted and compassionate individuals. Each day they go to a job where they will hook poison up to the IVs of kids from infants to teens. They clean vomit and diarrhea and other unfortunate things on a crazy regular basis. They see families, day in and day out, faced with the worst trauma they will ever experience. Parents in the middle of this level of stress are not always the easiest folks to interact with. But, somehow, these nurses provide comfort, laughter, food, support, professionalism, smiles, hugs, five minutes alone with your kid so you can run to the bathroom — whatever it is you need in that moment. And they do it with grace.
And then there are the other families. So many other families that come from all walks of life. Cancer parents are every color, religion, size, class, shape, etc. Cancer is the great equalizer, it does not disciminate.
Some families you click with, and some you tolerate. Children’s Memorial, where Donna was treated, is an older hospital with semi-private rooms. Soon they will move into their new digs, a skyscraper shrine to pediatric health that will open next year, but with Donna, there were humble digs. Humble, tight, semi-private digs. You get to know your roommates pretty quickly.
When Donna was in the midst of her chemo, I spied another Cancer Mom across the playroom and immediately had a mom crush on her. (Note: always use capitals when addressing Cancer Parents, because, Lordy, are they worthy of your respect.) I was instantly curious about the little boy toddler at her side and smitten with how his onesie went unsnapped at the bottom, allowing the IV tubes to trail out behind him. Clever! I like clever people. He was adorable and she looked like the best friend I hadn’t been introduced to yet.
I took care of the introductions myself on our second or third sighting. We clicked instantly. Her son had recently been diagnosed with AML, the less fortunate type of leukemia. We laughed together, admired one another’s kids, discovered we had gone to the same college. She and her husband were beautiful and loving parents to both of their sons. It was always a bonus to see them in clinic or on an inpatient stay.
At the beginning of this month, they learned that their young son, Gabe, had relapsed. My heart sank for them. My fear reignited for Donna. When you become a Cancer Parent, it is hard to separate another’s losses or joys from your own. You are so intimately connected because of the intensity of what it is you share — the hellish knowledge of fear — that you feel what they feel and vice versa.
Gabe’s status changed quickly and within weeks he unexpectedly died. Suddenly. Gabe was gone. This was not right. But it was.
On Mother’s Day, Gabe’s would be/should be second birthday, we went to his wake. There were no birthday candles, only hundreds of people gathered to pay their last respects. We stood in a line that stretched out the room that was bursting with people. There were children running and playing and nurses we recognized and beautiful Gabe at the front in his coffin. He was lovingly surrounded by some of his favorite things. It was the first time I had ever seen a child in a coffin. I am grateful that when I think of Gabe now, it is smiling and laughing and taking laps with his Dad around the nurses station, his onesie and IV tubes trailing behind.
When we got close to the front of the line and Gabe’s Dad saw us, he jumped out, protectively took us aside, and told us we should not be there, we should not see Gabe like that. How on earth he felt protective towards us on this day of tremendous loss speaks to the kinship Cancer Parents feel towards one another. Later, Gabe’s Mom spoke a few words to the folks gathered that were warm and kind and loving. I marveled at her strength. I kept wanting to go hold her hand while she spoke and hug her and comfort her.
I wrote this later that night in Donna’s journal:
“There is survivor guilt tempered with fear tempered with the strangest sense that the world has turned upside down and inside out. Someone at the service referred to Donna as a “success story,” and we both cringed a bit. With cancer, there is no certainty. A Cancer Parent knows you never know. Instead, you learn to set a place at the table for this beast. Sometimes you talk to it, sometimes you yell at it, mostly you try to ignore it. Cancer is not a polite house guest. It overstays its welcome, never cleans up after itself, and you always know its there — even on the best of days. And when it gets what it came for, today it was a beautiful boy who should be celebrating his second birthday, it still remains. You would think it would have the decency to leave. It doesn’t. Cancer will forever be with this family, just as it will be with ours. Like a bad tattoo.”
This was a difficult day. I needed to do something life affirming before returning to Donna. I asked Mary Tyler Dad to stop at the Target on the way home. As I suspected:
One mother was saying goodbye to her son, I was being introduced to mine. It was Mother’s Day, but for a Cancer Mom, that is not always a day to celebrate.
3 Replies to “Donna’s Cancer Story: Mother’s Day”
Wow! Not a day has passed that I have not shed a few tears while reading your blog. Even though I understand … I still find myself pulling for Donna and for MTM and MTD. I thank you from the bottom of my heart for having the courage to share your story with us.
Wow. Thank you for sharing this story with us out here in net-land. I do not have a cancer story, but I have a child with major psychiatric issues that will at some point be specifically diagnosed in the thought disorder category… which includes bi-polar, borderline personality disorder, and schizophrenia. Our most likely candidate is the latter. I connected specifically with the letter you wrote in Donna’s journal. Mental illness is a similarly impolite house guest that will never leave. It moves in. There is a guilt associated with the “normal” children and the “ease” that they provide. In some strange way, I understand in my own circumstance, a sense of guilt and sadness, about how you can’t get too happy about the good times, and you wait for the bad ones. Bleh. Hug your son once for him and once for Donna for me.
I think it is a clever idea to honor childhood cancer awareness month in this fashion. I do have to agree with the whole “setting a place at the table” feeling you have about cancer. I can totally relate! My daughter was diagnosed with desmoplastic small round cell tumors (DSRCT) on January 23, 2009. She relapsed in April 2010 and, sadly, passed away June 6th 2011. I sure miss that girl! And now, in the place of childhood cancer, grief has taken up residence. Life is a little less bright, much less meaningful, and so much more difficult. Thank you for sharing your journey!
I have a website – http://www.momcologist.com – that is a literary site for momcologists and dad-cologists and any family member to share our experiences with childhood cancer.
I am looking forward to reading your past entries and the rest of Donna’s entries throughout the month.
Kirsten – mom to Keiha, Kyran & Kirsey and momcologist to Rhema