“When Maeve was 3 years old, we had her little sister Paige and I thought life couldn’t get any sweeter. However, four months later, Maeve started complaining about tummy aches and feeling constipated. We thought it was normal toddler health issues, since they tend to eat badly.
When the complaints got frequent, we took Maeve to the doctor, who felt a lump in her tummy. The doctor also thought it was a bad case of constipation and advised us to give her more fibre-rich vegetables.
We tried to improve Maeve’s diet for about a month, but it got so bad that she refused to eat and even avoided favourite foods like chocolate. That got me worried. Things got worse when she started throwing up.
One night, she was sitting on her potty, crying and screaming in pain, so we called her paediatrician for advice. When the doctor heard her cries in the background, he said it didn’t sound normal and told us to bring her to a specialist at once.
With the help of some doctor friends, we secured an appointment with a stomach specialist at the National University Hospital. We thought Maeve would get stronger meds and everything would be fine. I still remember telling my daughter that morning, as we were building a space ship out of big diaper boxes, that we’d come home and finish our project. Little did I know that we won’t be back for months.
“The doctors…needed her awake to feel the pain... They needed her screaming in order to treat her condition.”
During her specialist’s appointment, ultrasounds and X-rays were done. Doctors found out that both her intestines had fused together, resembling an accordion. This condition is known as ‘telescoping’.
Telescoping can happen for a variety of reasons, but at that point, the doctors didn’t suspect cancer yet. They would try doing an air enema ― pumping air through the anus ― to help separate the intestines. When we were told that it would be a painful procedure, we asked if Maeve could get some pain relief or be knocked out.
The doctors said no, unfortunately. They needed her awake to feel the pain, so that they could gauge her reaction to make sure they didn’t overdo it and end up bursting her intestines. They needed her screaming in order to treat her condition. Though I couldn’t handle hearing that, I knew we had to proceed.
The next day, they did the air enema three times but each time, it failed. Maeve was screaming her head off, so it was really hard to watch. Since this procedure wasn’t working, they proceeded to do emergency surgery ―they had to open her up and see what was going on.
Up until then, we hadn’t really explained much about the condition to Maeve, nor I ever spoken to her about surgery and what it entailed. My little girl was so confused and kept asking me what was going on and where they were taking her. I was at a loss for words and told her they were taking her somewhere to rest for a while. I was not allowed into the surgical room, which scared Maeve even more. But my brave daughter pulled through.
What did the doctors find during the surgery? Read on!
During the surgery, her doctors found the tumour that was causing all the problems ― it was taken away for a biopsy. Maeve recovered slowly the next week from her major stomach surgery. She was poked and prodded with needles, confused, tired, nor did she trust anyone anymore.
The only way she would sleep was on me, which meant that I had lie down on the hospital bed with her on top of me. I wasn’t able to shower, eat or visit my newborn, Paige, who was being cared for by my helper full-time at that point.
Since I was still breastfeeding I had to pump my milk and send it home with friends and relatives who offered to come pick it up every day, so that I could at least do that for my precious baby.
A week after the surgery, a team of doctors came to visit us at Maeve’s ward. Since Maeve was sleeping on top of me, they whisked my husband Bernard away to break the awful news to him in private. Our firstborn had stage 2 Burkitt’s lymphoma and it was aggressively attacking her digestive system and spreading to the surrounding nodes.
This type of cancer doubles every 48 hours, so every day that we didn’t start chemotherapy, it would keep multiplying and her condition will worsen. So, although Maeve hadn’t fully recovered from her surgery, we had to get started her on chemo at once. We were instantly wheeled to another ward. Everything was happening so fast that we had no time to process anything. It was a super-stressful time to say the least.
“She was poked and prodded with needles, confused, tired, nor did she trust anyone anymore.”
Maeve had to undergo another surgical procedure to put a port in, to get her ready for chemo. This is a little device that keeps the big artery beside the heart open, so that the chemo meds can be pumped straight into it.
Maeve did chemo for about four months. She was supposed to be hospitalised for one week for the treatment and recuperate at home the following. But Maeve’s immune system got dangerously low after every round of chemo, she would catch some kind of illness. So, a few days after her chemo, she would catch a fever and be back in the hospital.
Sometimes, the meds would not work and her fever would continue to climb. Then all we were left with was to pray. One such occasion, her fever spiked to 40 deg C plus and nothing the doctors did helped. We were told to prepare for the worse. I mobilised our entire church to pray ― we prayed through the night. Her fever broke the next day and Maeve was completely fine ― it was a miracle.
Since her tumor was very aggressive, her chemo was short and intensive. She had eight intravenous (IV) lines pumping meds into her body simultaneously. So, if she wanted to walk around during those sessions, we had to hold onto two poles. She looked like an octopus!
Coming up next, how Maeve and her family kicked cancer to the curb!
It was hard to keep her spirits up, but since she was only 3, I used Maeve’s childlike innocence and love for imagination to our benefit. We decorated her IV poles with glitter and pretended she was a princess taking a walk at a royal parade. The nurses were more than happy to join in the fun and waved back at her.
When it came to explaining her chemo, I told her we are going into battle and we’re going to fight the ‘bad soldiers’ in her body by putting in the ‘good soldiers’. When she started losing her hair, my husband and I shaved our heads together with her. It also helped that Paige was a bald baby then!
After the shave, I told Maeve that we looked like fierce warriors and the bad soldiers were going to be scared of us now. I think it helped her a great deal as she didn’t feel alone and felt like we were battling this cancer together.
“When she started losing her hair, my husband and I shaved our heads together with her. It also helped that Paige was a bald baby then!”
We also used the same narrative whenever we had to visit the hospital, especially during unexpected visits. We would leopard crawl in and do the whole Mission Impossible thing, so that we could catch the ‘bad soldiers’ unaware. Because of that, things wasn’t as bad as it could have been, because Maeve was constantly taken on an adventure.
After four-and-a-half sessions of chemo, Maeve was declared cancer-free. We had to go back for another scan two months later, because if Burkitt’s lymphoma was to return, it usually does so within the first year. If not, there’s a good chance it won’t. Maeve goes for a follow-up scan at the end of every year ― she just went for one not too long ago, and the results were great.
We’ve been so blessed to have our daughter back in our lives with a clean bill of health that we find every opportunity we can to give back. When Maeve was in the thick of it, I wrote Brave Maeve, a fantasy to help her find inspiration to fight her cancer. Today, it’s a published book that has been translated into 12 languages and distributed to hospitals all the around world to help inspire other children going through the same ordeal.
We also did Brave Maeve the musical in 2013 ― Maeve played herself although it included professional and amateur actors. Part of the proceeds went to the Children’s Cancer Foundation.
Since her cancer happened so fast and I had to remain strong for my toddler, I never had a chance to process my own feelings. So, writing this book and producing the musical was a cathartic experience for me.
My key takeaway from this experience is that I’m stronger than I think. If you ask Maeve, she’ll tell you that since she beat cancer, there’s nothing in the world she can’t tackle, and that is a blessing.”
Joanne Poon, 42, is a theatre teacher at the School of the Arts (SOTA). Married to Bernard Low, 44, she is mum to Paige, 6, and Maeve, 10.
Read on to learn more about Burkitt’s lymphoma.
Burkitt’s Lymphoma ― The Facts
Paediatric oncologist Dr Quah Thuan Chong sheds light on this condition.
* Burkitt’s lymphoma is a rapidly growing aggressive cancer, but it responds very well to chemotherapy.
* Singapore sees about 10 new cases a year.
* Most cases occur in children who are otherwise perfectly normal.
* Signs and symptoms include fever, and swelling of lymph nodes and abdomen. They might also experience pain in the bones.
* Most can be cured with chemotherapy. In some cases, we add immunotherapy in the form of a specific antibody targeted at lymphoid cells.
* In the worst case scenario, the lymphoma may invade the bone marrow and brain, but even these children can be cured.
* Health complications, if any, are related to chemotherapy, such as a higher chance of infertility in the future and secondary tumours ― cancers that are triggered by anticancer drugs.
Contributed by Associate Professor Quah Thuan Chong, head & senior consultant, division of Paediatric Haematology and Oncology, National University Hospital.
Photos: Joanne Poon
This story was written in collaboration with the Children’s Cancer Foundation (CCF) ― a non-profit organisation whose mission is to improve the quality of life for children and their families who are living wih cancer. In Feb 2017, CCF celebrates 25 years of service.
** Joanne hopes to restage Brave Maeve the musical soon and would love help in all aspects, from financial to willing hands and feet. If it’s a cause you believe in too, leave her a message here.
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