Working Alongside Senegal’s Only Pediatric Psycho-Oncology Team: Part 1
*Trigger Warning*
More than previous posts that I have written, this series of three posts will talk more intimately about grave and terminal pediatric illnesses and the death of children. I will discuss the factual and practical side of being involved in this work, but also the emotional realities associated with providing support to this population. I can’t imagine a situation where a discussion of this nature would not be upsetting to some degree. Please take a moment to assess for yourself if reading on is appropriate for your current emotional state. However, if you do decide to close this tab today, I urge you to try to find a time to return back to this blog when you are able. Pediatric mortality is rarely acknowledged and these truths are seldom discussed. This information and these stories, plus much, much more than I cannot possibly attempt to encapsulate in my short blog, deserve to be heard and recognized.
The Story of a Shell
So, what is the point of souvenirs? You may think that gathering keepsakes and tokens to bring home with me might be more than a last thought after almost 7 months of international travel, but you’d be wrong. For the most part, I have forced myself to be on the lookout for a small gift for a family member and to bring myself shopping during the final week I spend in a country. If I am being honest, until last week, I didn’t really see any merit in collecting souvenirs from my time abroad. Of course, I’ll have my photos to look back on, but beyond that, I could envision any other item just gathering dust on a shelf or sitting in the back of a closet.
But my perspective changed in an unexpected way. I spent last weekend in another part of Senegal a few hours’ drive from where I am staying. On the route, the guide showing me around stopped so that I could visit Nianing New Church. This is a pink-salmon-colored church built in seven levels to resemble the bright, iridescent shells found in the surrounding area. While the history of the building was being explained to me, my guide picked up one of the said shells from the ground to highlight the resemblance. With some trepidation, I asked if I could take that shell back with me, my mind immediately envisioning a homecoming celebration where I could proudly present this unique piece to my mom. If you don’t know, my mother is a prolific shell finder and collector. I could clearly picture the shiny shell earning its place displayed front and center in my parents’ living room, ready to be admired.
But as I was asking, the guide placed the shell back into the pile, and told me not to worry, “The next stop we are going to will have even better shells to pick from!” And so we drove off, and the glittering light reflecting from the shell faded in the rearview mirror. We never did pick up another during the drive. Before hopping in the car to head back to my hotel at the end of the weekend, I asked once more about the shell which I had not forgotten. Yet I was met with a bit of anger and informed that to visit that spot again now would be too absurd a detour for a silly shell.
To me, it felt similarly absurd that I bit my lip for the two-hour drive back, holding in anger, sadness, and a bit of regret. It indeed felt like a lot of emotion for a silly shell.
During the weekend, I got to meet the kind family of my guide. By chance, his youngest child happened to share a name and was the exact age of one of the patients I’d grown connected to at the hospital. The week before my trip away, I sat in the room with this child’s family as they were told not only of a cancer diagnosis but also of the incurable nature of this particular type in Senegal. Seeing the changing nature of the interaction between parent and child during the week, I suggested doing a handprint art activity with them - as it would allow for bonding now and a keepsake in the end.
Spending an hour or two with this other child felt like living in an alternate reality. It was impossible to escape the knowledge that in several months, or a year or two, one child will be needing bigger shoes, learning new skills, and developing new opinions. The other will live on only through photos, stories, and artifacts.
And I couldn’t stop thinking about that shell that I wanted to give to my mom. Something meaningful and mundane. A statement of presence and expression of love. All contained in a pink shell, left on the side of a road.
The Population Served
The hospital where I am working and observing houses the only dedicated pediatric oncology service in all of Senegal. Based on population statistics and childhood cancer rates, the team estimates that only about a quarter of patients with pediatric cancer make it to their service. Those who don’t may be going without treatments, getting care from traditional healers/medicine practices, or are being supported by more local clinics that often lack knowledge about cancer and/or the resources to treat it. Of the children who are followed by the team, only about 50% survive their diagnosis.
And the path of some diagnoses are more sure than others. For example, Acute Myeloid/Myeloblastic Leukemia has no available treatment options in Senegal. Every child who receives this diagnosis is immediately placed with palliative services. Likewise, practically all osteosarcomas here require amputation. While looking at an activity that I designed for adolescents facing amputation due to osteosarcoma, I saw that I reported a statistic that documented that in the US, only 5-25% of these cases require amputation. It was striking to be reminded of the difference between the US reality and how things are here, amidst the conversations I had been having around this diagnosis in the past several weeks.
Even with that, many families travel from neighboring countries to Senegal to get treatment for their child’s cancer diagnosis because the infrastructure, treatments, and outcomes in their home countries are much worse. I was not prepared for this stark contrast in life expectancy for pediatric cancer, despite well-trained doctors’, nurses’, and other team members’ best efforts. And it is a hard truth to accept, reconcile, and know what to do with. That is something that I am still trying to work out.
The Families
It is challenging to convey the fortitude, courage, and level of perseverance among the families in this patient population fully and accurately through writing. A lot of this strength is felt and understood simply by being in their presence. Through hearing them share their stories firsthand, the determination becomes apparent. And so does the fear and stress.
Even for families that don’t have to cross country borders, the journey to getting to the pediatric oncology ward or the chemo room, receiving a diagnosis, or getting treatments that hopefully have a chance of beating the disease is not simple nor easy. It is emotionally, physically, and financially draining. Most patients pass through at least 5 or 6 health services in search of answers or assistance before ever making it to the team at the hospital where I have spent the past two months.
Since there is often a lot of conflict among family members regarding treatment paths and options, many parents/caretakers opt to keep details of the illness and the child’s suffering privately. But the travel, scans, appointments, and prescription costs also add up fast. Parents lose their jobs to be with their children and have to rely on a singular or reduced income or ask for help from family if they are close, supportive, and in a well-enough place to be able to provide that type of assistance.
Throughout all of this, parents struggle with not receiving enough communication from smaller hospitals along the way with regard to what is happening to their child and why, including what tests are being run. For this reason, the team that I am working with prides themselves on always being honest and straightforward with parents. They don’t sugarcoat reality or conceal the truth. They tell them what they are up against and remind them that they have support around them and teams to care for them and their child during the journey, no matter what happens.
But parents are still scared. Many still decide not to tell the broader family of a cancer diagnosis. Sometimes, only the person accompanying the child in the hospital will know the true illness and the other parent will not be told. Many worry about where cancer comes from and how their child got it. They stress over survival chances, which cannot be determined.
The psycho-onco team steps in to provide emotional support to parents and caregivers in a variety of forms. The simplest way they do this is just by being present. Daily, the team makes rounds to the hospital and chemo rooms to check in and see how everyone is doing and coping. They see who might need additional services during the day and who needs space to talk. Beyond this, the team does more formal interviews with patient companions too. These include doing interviews a little while after they receive a diagnosis to provide space to process but also assess what they did and didn’t understand about what was told to them. It is also a way to determine the availability of a variety of psycho-social coping resources and supports.
Monthly, the team hosts focus groups for those accompanying a child in the hospital to get together and share with each other about a specific theme. This space allows them to relate and find support from others on similar journeys at the same time.
Supporting the Children
In all of this, the ill child is not forgotten. They often are the center of the team’s attention. Usually, they are the focus of attention during morning rounds and in setting priorities for activities and working with families. Every week, the team also hosts a number of alternative activities and therapies for the children to participate in and get out of their rooms. These group gatherings host art therapy, story therapy, psychometrics, and play groups. But there are also opportunities for individual support sessions. This may come in the form of one-on-one play at the bedside or in the playroom or through an interview. The interviews help the team assess the impact of the illness on the child’s life and well-being at large, and they also provide a space for the child to process the events that have transpired and share what they feel called to discuss.
Photos from alternative therapies and activities throughout the month for the pediatric oncology patients
Medical Team Support
Beyond just looking after the child and their families, the psycho-onco team also helps to support the doctors and nurses treating these patients daily. They create opportunities for individual and group spaces to allow for processing the pain and suffering of the look in the eye day in and day out. My supervisor shared with me the other day that she was once told by a team nurse that they were jealous of the work of the psychological team. When questioned about this, she said that when the psychology team staff walk into a room, the children light up, laugh, and engage. But when she walks into their room, they scream, cry, and cower. And she is the one working tirelessly to save their lives.
The team’s office sits opposite the chemo room. Without break, we can hear shrieks of pain and yelps of fear bursting out of the room all day long. This is not a sound that you can drown out or one you become accustomed to. I know that I will leave that office in a week and I will stop hearing that soundtrack of suffering emanating from little bodies. I also won’t forget it.
Leaving evokes similar feelings that emerged when I drove away, leaving that shell discarded on the street. I feel helpless and hopeful. My brain acknowledges the reality of loss while my heart holds on, waiting for the possibility of a different ending.
There is matter and meaning even in something small, in something that touched your life but for a brief moment.
Read Part 2 of this series: Preparing a Place in Paradise
Read Part 3 of this series: “In the end, it is in God’s hands”
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