Eli's Story: Untouchable

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Rebecca Silton

When I first found out I was pregnant, I was working as a postdoctoral fellow for the neuropsychological consultation service at Seattle Children’s Hospital. We worked closely with kids who were diagnosed with brain tumors to help evaluate changes in cognitive function related to tumor growth, chemotherapy, radiation, and related surgical procedures (biopsy, resection, shunt placement and revisions, etc.).  We attended brain tumor rounds: the meeting where the most challenging cases were discussed by the brilliant medical team. My supervising neuropsychologist kindly told me that I could skip attending rounds while I was pregnant.

I did not realize it at the time, but I was clearly flirting with fate when I told him that learning about fatally ill children did not bother me. And so, I continued to attend brain tumor rounds, gaining an invaluable education about intractable pediatric brain and spinal cord tumors. I still carried with me a sense of my own idealism and lacked a sense of my own mortality, which also transferred to the baby in my uterus. I felt untouchable and unfazed.

Eli and truck

When I was about six months pregnant, my husband’s grandfather passed away. Someone reminded me of their superstitious belief that pregnant women should not attend funerals.  Being extremely fond of my husband’s grandfather, I had no plans of missing the funeral because of silly superstitious beliefs. Plus, I was still doing headstands in yoga despite being quite pregnant. I was untouchable.

We moved to Chicago and I was teaching a graduate course on neuropsychology.  I was scheduled to lecture on pediatric brain tumors the week that our 10-month-old son was diagnosed with an inoperable, irremovable, infiltrative spinal cord tumor (diffuse fibrillary astrocytoma). My armor shattered and I have been vulnerable and exposed since then.

Eli sporting his gold for September!

Eli sporting his gold for September!

While my son carries an optimistic prognosis, there is still a lot of medical uncertainty intertwined with his prognosis, and there is no magic bullet cure for his spinal cord tumor. Frequently feeling psychologically undressed and vulnerable, I have latched on to superstitious and magical beliefs: no scheduling routine MRIs on Friday the 13th or September 11th for that matter either.  If the chemo protocol is working, then we go at the same time and same day for treatment, no exceptions.

When Eli was at risk for needing a blood transfusion due to low hemoglobin counts, I donated blood to Red Cross for good karma. I have small veins and the Red Cross attendants did not want to take my blood. I refused to leave until enough blood was drawn for donation. My karma plan worked. Eli’s hemoglobin counts rebounded, and has not yet needed a blood transfusion.  Since it’s hard for me to donate blood regularly, my husband has continued to do this.  While he has his own aversion to needles, DJ has veins the size of the Mississippi.  Also, his own transformation at the hands of Eli’s tumor has made DJ less queasy with all things medical.

In the face of medical uncertainty, I have learned to live in the present, day-by-day, moment-by-moment. Lacking a developed prefrontal cortex, it turns out that toddlers are little zen masters who only care about the present moment in which they are living, so I do my best to follow Eli’s lead. When my mind rambles too far ahead, I do my best to direct it back to the present and to simply focus on enjoying the moment and creating memories for the future. This slight of mind does not decrease the daily awareness of the closeness of mortality for all of us, but allows me to live in peace with this awareness.

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Grateful thanks to Rebecca for sharing Eli's story.  Eli is treated at the same hospital that treated Donna.  His family supports a few different charities.  One is the Young Associates Board -- they host the annual run where Team Dancing Donna wears those famous tutus and donate all their proceeds to the pediatric brain tumor program at Lurie Children's Hospital of Chicago.  Another is Project Violet that encourages individual to "adopt a drug," a new approach to funding research for children's brain tumors, that are often ignored by pharma companies.  Finally, the American Red Cross, as so many children treated for cancer require frequent blood transfusions.   

If you're looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

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