A doctor’s check-up for what was thought to be a stomach ache revealed a devastating diagnosis - Maeve, her three-year-old daughter, had Burkitt’s Lymphoma, a rare and aggressive cancer. Chronicling their journey into a book that brought healing to Maeve and inspiration to others, Joanne harnessed the power of storytelling to encourage other families going through the same.
Introduction
Hi, my name is Joanne, I’m a freelance drama teacher but I spend most of my time as a stay at home mum to my two daughters, Maeve and Paige. This is the story of how I explained the cancer treatment process to my daughter, Maeve. Maeve was diagnosed with stage 2 Burkitt’s lymphoma in 2010 at three years old.
The Beginning
In 2013, I had just given birth to my second daughter, Paige. When Paige was about four months old and Maeve was three, Maeve started to complain about stomach aches. At first my husband and I wondered if the problem was psychological as every time I nursed Paige, she would suddenly have a stomach ache as well. We chalked it up to her trying to get more attention from us after we had our younger daughter, and gave her constipation medication for about a month or so. However, we knew that something was seriously wrong when Maeve started to reject chocolate, her favourite food, and threw up Ribena. We took her to see our paediatrician. His wife, who was also a paediatrician, suggested that we take her for a check up with a specialist as a precautionary measure. At the check up, the doctors discovered that the initial reason for Maeve’s stomach aches was that her intestines had telescoped (overlapped) into one another. The procedure required to pull them out was an air enema to pull them out immediately. Although it would have been more comfortable for maeve to be put under sedation, it came with the risk of perforation of her intestines, so Maeve’s father and five male nurses had to pin her body face down on the hospital bed, while a pump was inserted into her anus to apply air pressure to the telescoped intestine.
I was in a lot of shock, and I could not bear the thought of them putting the line through her veins. I remember telling my husband, Bernard, “You have to be there because I can’t; I can’t see my little girl going through that.” He had to be there, holding her hands down while she was screaming, “ Daddy why are you letting them do this to me?”
The diagnosis
After two unsuccessful tries, Maeve had to be taken into surgery, something I had no idea how to explain to her. I was not at all prepared to tell my daughter that they would be operating on her. How would I explain the process of being cut open for a medical procedure to a three-year-old? Such questions plagued my thoughts and only added to my anxiety. Eventually, we just told her “Oh, we’re just going to do a check-up, and the next thing she was knocked out.”
When Maeve awoke, she was furious, and aimed a flying attack at my husband. In her mind, she expected that her mummy and daddy were supposed to protect her from bad things and people, yet we had stood by and allowed these “bad” people to do horrible things to her while she was in so much pain. In that room, my husband also had to face the team of surgeons alone, as he received news that put him in a state of complete loss and helplessness. Maeve was diagnosed with Burkitt’s lymphoma, a rare type of cancer. I was extremely shocked, because you never expect your child to have cancer, especially because cancer is thought to be a lot more common amongst those who are older, and because Maeve had come into the hospital for something else. Luckily, my husband’s quiet level-headedness kept me anchored as the doctors proceeded to arm us with large quantities of information related to how Maeve would need to be cared for in the future. For instance, we were instructed on the specifics of maintaining a clean environment at home for Maeve when her immunity levels dropped from chemotherapy treatment. At that point, my husband and I were comforted by the fact that we were able to do something to help her.
After Maeve was diagnosed as having stage two Burkitt’s lymphoma, we embarked on a four-month process of four-and-a-half rounds of chemotherapy. This happened almost immediately after her diagnosis because of the aggressive nature of the cancer and how quickly it was spreading.
My husband and I contacted our friends and relatives to inform them about the situation, and we were blessed to have received immense support from them as they helped to encourage Maeve in her fight against cancer.
Friends from church came to redecorate Maeve’s hospital room, pasting giant princess posters on the wall, replacing hospital bed sheets with princess-themed spreads, and filling the room with colourful balloons and fresh flowers.
We stayed overnight in the hospital with Maeve while our younger daughter, Paige, who was still an infant at the time, was looked after by our helper. Since she was still on an all-milk diet, I had to start pumping milk that relatives and friends would help to drop off at home from the hospital.
Friends and family were updated on developments with Maeve’s treatment through entries on my blog, and our parents cooked and delivered daily lunches to Maeve so she would not have to eat hospital food. Our church friends took turns to deliver dinners to Maeve, and we often found ourselves eating Maeve’s hospital food.
The turning point
Although I had received books on how to deal with cancer from friends, I felt that they were not framed in a way that would help Maeve understand her situation. Keeping in mind that Maeve was somewhat of a “drama queen,” I knew any story I told Maeve would have to be some kind of adventure. At the hospital, I took out a notepad I had with me, and began scribbling down a story to explain Maeve’s situation to her.
In the story, a princess called Brave Maeve had to fight an evil stone, so she brought in good soldiers (which was how we personified chemotherapy) to fight the evil stones who kept multiplying. The story was written for an audience of one, just Maeve. I even let Maeve draw the characters from the story, like the stone, to help her be more engaged in the story when I read it to her.
The story helped her to take charge, as she played an active role in the story. She made the decision to let in the good soldiers, to let them fight. Sometimes, when they fought, things happened when the battle got fierce — her hair fell out, her food tasted funny, but it was always her choice to keep fighting. She chose to lead the battle and emerge victorious.
A picture of Maeve
The battlefield
Throughout her treatment, we continued to add to the story of the brave Princess Maeve. When Maeve returned home between week-long rounds of chemotherapy, her immunity dropped drastically, and she would develop fevers late at night.
Whenever this happened, we would pretend to be warriors who had to sneak into the hospital to fight the evil stones under the cover of the night. We even began to leopard-crawl up the hospital corridors stealthily, as the nurses on duty looked on with fond amusement. By doing this, we were able to convert those visits to the hospital from dreaded events into something fun that added to the adventure!
As Maeve’s waist-length hair began to fall during chemotherapy treatment, I cut her hair into a bob, and eventually got the entire family to shave their hair off with Maeve. Maeve was a very girly girl, and her long hair was the most precious thing in the world to her. I knew it was going to drop off, so instead of just letting it fall off slowly, we took charge of that as well. We framed it such that it was her choice to shave it off, because we needed to get into battle mode, and in order to do so, we would look fierce and warrior-like with our heads shaved.
Luckily, she was totally fine with shaving her hair because everyone in the family was doing it. It was as though we were all fighting with her as warriors, so she was never affected by the fact that she had no hair.
Maeve and her family
Inspiring others
At the end of her fourth week-long round of chemotherapy, Maeve’s battle was finally over. She had a “No More Chemo” costume party to celebrate, and months later, was declared cancer-free. After her chemotherapy treatment, we wanted a fresh start for her, so we enrolled her in a new kindergarten in 2011.
In kindergarten, Maeve mentioned in passing to her teacher that I had written her a story about having cancer, and fighting the “bad stones.” In a very serendipitous chain of events, Maeve’s teacher had a friend who was a doctor and had been interested in illustration. When Maeve’s teacher heard about the story I had written for Maeve, she contacted me to ask if I would be willing to let her friend illustrate my story. At that point of time, I had no intention of publishing the story, as I had crafted it with an audience of one, Maeve, in mind. Although I warned her teacher that the story might never be published, the illustrator was still keen to try her hand at illustrating the story. After she had done so, I was amazed to realise that it was exactly like how I had imagined it while I had been writing the story. In 2013, a publisher came forward to print 2,000 copies under the funding of a sponsor. In a strange twist of fate, Maeve’s oncologist brought the book to a conference on best practices in paediatric oncology, and doctors from all over the world started purchasing the books and asking for my autograph! With the help of my husband, I took the project online and multiple volunteer translators from around the world helped to translate Brave Maeve into seven different languages!
It was really wonderful how happy the translators were to do this project. I received happy emails from them thanking me for allowing them to do the project, when I felt as though I should be thanking them for translating my book for me!
Joanne and Brave Maeve, the published book
Picture from Brave Maeve Singapore facebook page
25 January 2013
One of my ex-drama students even adapted my story into a musical, which actually helped provide closure for me and my family and friends who had been closely involved in Maeve’s journey. Watching somebody else be me gave me permission to really just cry, because for the months that we were going through the treatment process I couldn’t. I always had to be that cheerful person for my daughter. In that way, it was cathartic. During every rehearsal for the first show, I would be bawling my eyes out and affecting the whole cast, and the cast would be crying away as well! Because the treatment process is such a hectic one, there isn’t much time to reflect on it until afterwards. For our parents to be able to watch it from a third-party point of view through the play really allowed them and us to gain closure for the experience. The Brave team would like to thank Joanne for sharing her story with us.
Brave Maeve is available via the links below, and the Lasalle musical theatre department will be performing Brave Maeve, the musical at the end of November 2023.