Under our "Inspiring People" column, we highlight the incredible journey of one person who has overcome tremendous odds to achieve personal success. This column celebrates the triumph of the human spirit and we hope it will inspire you to reach for your dreams, too. This month, we bring you a young mother who spun a world and a story to motivate her three-year-old daughter to conquer cancer.
It’s never easy watching a loved one suffer.
It’s even tougher when it’s a parent watching her young one in pain — yet, that is precisely what 38-year-old Singaporean Joanne Poon went through with her now-six-year-old daughter Maeve.
Despite this, the homemaker and former drama teacher found the strength to inspire her daughter in her own unique way, by writing a storybook and creating a fantasy world that would help alleviate her daughter’s agony and motivate her to fight back against cancer.
Little did she know that her story would later become a published book, translated into at least seven languages and shipped to children’s cancer foundations in more than 14 countries all over the world, and as far away as Kazakhstan and Mozambique.
Late last year, Poon’s story was even staged as a musical, which told the story of her family’s journey through Maeve’s battle with Burkitt’s lymphoma, a rare and aggressive type of cancer that impacted her digestive system. The musical, picked up by the Singapore Cancer Society, may be restaged on a larger scale this year. Her amazing story has also been captured by the "Singaporean of the Day" video series about everyday Singaporean heroes.
All this, she tells Yahoo! Singapore in a recent interview, seems so overwhelming and unreal given that she had never intended for anyone apart from her elder daughter to read it — much less for it to be properly illustrated, published, translated and circulated.
News that no parent can be prepared to receive
Poon and her husband’s troubles began about four months after their second daughter Paige was born — when Maeve, then three, started complaining about stomach aches.
“We thought it was psychological because every time I was nursing her sister (Paige)… she would suddenly have a tummy ache, so we thought maybe it was attention-seeking as well,” said Poon. After giving her constipation medication for a month, Poon and her husband, Anglo-Chinese School (Independent) economics teacher Bernard Low, decided things were “not quite right” when Maeve rejected chocolate and threw up Ribena.
After consulting with Maeve’s paediatrician, the Lows decided to bring her to a specialist at the National University Hospital, eventually leading to a horrifying, excruciating discovery.
The initial reason for Maeve’s stomach aches: her intestines had telescoped (overlapped) into one another, and doctors needed to perform an air enema process to pull them out immediately. As sedation would run the risk of perforating the child’s intestines, Low and five burly male nurses had to pin her body face down on the hospital bed, while a pump was inserted into her anus, applying strong air pressure to push the telescoped intestines out.
“I was still in so much shock that I could not bear the thought… of them putting the line in through her veins, and I remember telling Bernard ‘you have to be there because I can’t; I can’t see my little girl going through that’,” said Poon. “He had to be there, holding her hands down while she was screaming, ‘Daddy why are you letting them do this to me?!’… I was totally cowardly, I just could not be there.”
After two agonising and unsuccessful tries, Maeve had to be taken into surgery — something else Poon had no idea how to explain to her.
“I couldn’t even explain to her about the surgery, you know, that you’ll be going for an operation and they will be cutting, and taking… I (wasn’t) prepared; which parent is prepared to tell your three-year-old about surgery??” she asked, recalling the anxiety she felt. “So we just told her, oh, we’re just going to do a check-up, and the next thing she was knocked out.”
41-year-old Low, who bore the brunt of a flying attack from a furious Maeve when she came to, also had to face a team of surgeons alone to receive news that he knew he would never forget.
“It’s a complete state of loss, (I didn’t) know what to do at that point and (I didn’t) quite know how to cope with that news (of cancer)… I felt very helpless at that stage,” he said.
“A lot of it is shock, I guess, because you wouldn’t think your child would have (cancer) — it’s something that you think might be a lot more common with those who are older, especially when she came in (to the hospital) for something else.”
His quiet level-headedness helped to keep Poon sane, however, when they received an armload of information from the oncology team on how to maintain a clean environment at home for Maeve when her immunity levels dropped from chemotherapy treatment.
“I think at that point at least it was more comforting that we could do something to help her,” he added.
Maeve was diagnosed at Stage Two, and so began a four-month process of four-and-a-half rounds of chemotherapy — one that had to start almost immediately because of the aggressiveness of the cancer and how quickly it was spreading.
Poon and Low contacted their relatives and friends to inform them of the situation, and the latter sprang into collective action, in what would become an epic suite of measures taken to encourage Maeve in her fight against her cancer.
Friends from church redecorated Maeve’s room in hospital with giant princess posters on the wall, replacing hospital bed sheets with princess-themed spreads, complete with colourful big balloons and fresh flowers.
The Lows stayed overnight in hospital with Maeve while the younger Paige, still an infant, was looked after by their helper. As the latter was still on an all-milk diet, Poon had to start pumping milk that relatives and friends helped to drop off at their home in Simei from the hospital.
They kept friends updated on developments with Maeve’s treatment through entries on Poon’s blog, and their parents cooked and delivered daily lunches to Maeve so she would not have to eat hospital food. Dinners were settled by a combination of the Lows’ friends from church, and mum and dad often found themselves eating Maeve’s hospital food.
Brave Maeve: birth of an inspiring book
After receiving books on how to deal with cancer from friends, Poon felt they were somehow not the most useful in helping Maeve.
She also bore in mind that being a drama teacher, her daughter was also somewhat of a “drama queen” — so she knew any story told to Maeve would have to be some kind of adventure.
With that, Poon sat down and weaved a story about a princess called Brave Maeve and a stone, and how the princess brought in good soldiers (chemotherapy) to fight the evil stones that kept multiplying.
“It was written for an audience of one, just her,” she said, adding that she let Maeve draw the stone and be engaged in the story when she read it to her.
“(The story was) helping her to take charge, because in this case she’s not passive, she’s active… she actually makes that decision, ‘I’m going to let in the good soldiers, and I’m going to let them fight, and sometimes things happen when they fight, when the battle gets fierce — my hair falls out, my food tastes funny, but I chose to do this. I chose to lead the battle and emerge victorious.’”
The fight continues
And the adventurous battle for Princess Maeve’s life continued right through her treatment. As the three-going-on-four-year-old went home between week-long rounds of chemotherapy, her immunity dropped drastically and she would develop fever late at night.
Whenever this happened, the Lows convinced her that they were warriors and had to sneak into hospital to fight the evil soldiers in the dark of night — even leopard-crawling up the hospital corridors stealthily, much to the amusement of the nurses on duty.
“So that way those visits to the hospital became something fun; it became an adventure, and not so much like ‘oh dear, I’m going to the hospital again because of the fever’ — so there was a reason for it,” she added.
As Maeve’s waist-length hair began to fall due to chemo treatment, Poon cut it first into a bob, and eventually got the entire family involved in shaving all their hair off together.
“(Maeve’s) a very girly girl, and her long hair was the most precious thing in the world to her,” said Poon. “I knew it was going to drop off, so instead of just letting it fall off, (we) took charge of that as well to say, okay, you choose to shave it off, because we need to get into battle mode—we need to look fierce and warrior-like.”
The Lows took Maeve to a $10 haircut shop where they all “went for the warrior look” — shaving all their hair clean off.
“She was totally fine about it because (everyone in the family) was doing it… so it became like we’re all in this together, we’re all warriors and we’re all going to have to look fierce. So she was never affected by the fact that there was no hair,” she added.
Inspiring book travels the world
Maeve eventually finished her fourth week-long round of chemotherapy with a “No More Chemo” costume party, and months later, was declared cancer-free.
When Maeve started going to a new kindergarten in 2011, she told her teacher about the story her mother wrote for her.
Through what Poon described as a “very serendipitous” chain of events and connections, Maeve’s teacher then had a friend who volunteered to illustrate Poon’s story for a book, did a beautiful job of it, and a publisher came forward to print 2,000 copies funded by a sponsor early this year.
Before Poon knew it, Maeve’s oncologist brought the book she wrote to a conference on best practices in paediatric oncology, and doctors from all over the world snapped up the books, asking for her autograph at the same time. With Low’s help, Poon took the project online, and multiple volunteer translators from all over the world help transform Brave Maeve into an e-book available in more than seven languages.
“They were so happy to do this project — in fact I got happy emails saying thank you for allowing me to do this project for you, and I’m like, I’m thanking you, you know, you translated my book for me!” she said.
One of her ex-drama students also adapted her story into a musical, that unexpectedly became one that helped provide closure for both the Lows and their parents, and other relatives and friends who were closely involved in Maeve’s journey.
“I think the wonderful thing was because I could watch… somebody else be me, it gave me permission to really just cry, because for the months that we were going through treatment I couldn’t. I always had to be that cheerful person for my daughter,” she said. “It was cathartic that way... So every rehearsal I'll be there bawling my eyes out and affecting the whole cast, and the cast will be crying away!"
Added Low, “The treatment process was a very busy one for everyone and so because of that you don’t really have the time to reflect about the whole thing until afterwards… I think it was also for our parents to watch it from a third-party point of view — so, in a sense, it worked out as a form of closure for us.”
Paying the love forward
Now, the Lows not only volunteer with the Make-A-Wish foundation in Singapore, but have also taken on a family project to donate items to a children’s cancer shelter in the Philippine city of Davao.
Called “Kids of Hope”, the effort is spearheaded by Dr Mae Dolando, one of the only paediatric oncologists there, and the family has from last month collected clothes, milk powder and even slippers, packed and shipped three large refrigerator-sized freight boxes to the shelter.
“She (Dr Dolando) shared with us that there are quite a lot of needs there because some of the parents who are there are really poor and may have sold their homes in order to finance the chemo,” said Low, who plans to partner the shelter for a seven-year period. “We thought if we could, you know, do whatever we can, a small part at least can help make their lives better, and we also hope to make a trip down next year as a family to visit.”
Asked if he had advice for parents of young cancer patients, Low said, “Something really important is to be strong for your child, to get as much practical help as possible… also tapping into the children’s cancer foundation network because there are other parents going through it, and they also have a network of social workers.”
“The best thing is not to keep everything to yourself because there’s a network of friends and relatives that’s always more than ready to come forward,” he added.
The Lows are planning to restage the Brave Maeve musical at the end of this year with the support of the Singapore Cancer Society. If you would like to get involved in any way, visit the Brave Maeve Facebook page here.
Joanne's story is brought to you in partnership with the Singaporean of the Day project. For more inspiring stories, visit their page here.