Manami Thom

Eulogy

Our beloved daughter, and most awesome big sister ever to Archie, passed away on Saturday the 18th of July, at home peacefully. On that day, we had received a friends’ visit in the morning and we were doing Manami’s regular daily makeover routine – combing her hair, brushing her teeth and so on. We noticed that her breathing was becoming more faint and quickly realized that the time had come. All of her family – us her parents, Archie and also Melinda - were around her and with her and reminding her how much we loved her as she passed on.

Manami was fifteen years, four months and seventeen days old. It was two years and exactly three months since her diagnosis. Throughout her life, Manami was a deeply compassionate, caring and loving person. She saw beauty and took joy in everything around her, she reflected that joy in her art and she spread that joy to every one of us, we were always blessed by her presence.

We’d like to take you on a journey through Manami’s life and share some stories that illustrate that gentle but determined spirit and how it carried her with such grace through her illness.

Manami was born on the 1st of March 2011 in a small local clinic in Tokyo at about one o’clock in the morning. I called my Mum and Dad who were delighted to hear that their first granddaughter had just been born tomorrow. It was still the last day of February in Scotland!

Like all new parents, we were suddenly thrown into the non-stop routine of comforting, feeding, burping, changing diapers, and trying to get our baby to sleep. We were just starting to adjust to this rhythm and surviving on very little sleep.

Then, just 10 days after our daughter was born and 5 days after coming home from the hospital - on Friday March 11th - a massive earthquake followed by a devastating tsunami hit north-eastern Japan.

This was my first day back at the office and I have never been so scared of anything in my life. The building I was in was dancing around like a wild fairground ride gone wrong. Even knowing how well things are built to survive this in Japan, I was convinced my end was coming and the only other thought in my mind was whether that which I loved most of all in the world would be spared.

As I walked all the way home, through Shinjuku where the skyscrapers were swaying like reeds in the wind to slowly dissipate the energy of the quake, communications started working again and I got a message from Natsuko telling me that she and Manami were OK. I had to explain to a couple of nice Japanese ladies who found me sat on the pavement crying that I was in fact very OK.

We were all spared, but twenty thousand other people died on that tragic day. As I was on that long walk home, the black tsunami waves were sweeping lives away and setting in motion the multiple meltdown disaster in Fukushima.

Each year around Manami’s birthday, we recall the event and pray for ongoing healing from the suffering of that day.

Although the physical damage in Tokyo was not so severe, the recurring aftershocks felt never ending, and the situation at the Fukushima nuclear power plant grew more worrying, it was incredibly stressful for us. And so it was that at age 25 days, Manami made her first international trip… to Singapore! Our dear friend Chris Gillatt let us stay in his condo to escape from the aftershocks in Tokyo for a while.

Manami lived in Japan for the first two years of her life. Gran Thom came to visit early and she was baptised on Easter Sunday at St. Alban’s church in Tokyo.

Manami loved the beauty of nature through all of her life, she always had a quiet excitement around her whenever she was seeing something new. And she was always compassionate to others, even from the youngest age.

Manami’s other great interests in life also started young. She took great joy in meal times and she loved milk so much that her first word was not “Dada” or “Mama”. It was “Goo-noo” – gyunyu, the Japanese word for milk.

Her sense of fun and of humour also developed early. Here she is, still less than a year old, clumping around in Dad’s slippers!

I want to tell a quick story about a game of peek-a-boo I had with her when she was very small. In Japanese the game is “i-Nai-i-nai, bah!”. I had her on my lap and was doing the i-Nai-i-nai-bah! routine with her. During one “i-nai-i-nai”, I ducked off to one side so when I uncovered her eyes “bah!” I wasn’t there. She made a perfect wee “huh!?” expression, looked over in the wrong direction and then back to me. As she found me, she burst into gales of laughter.

About the same time, we were both still asleep while Manami amused herself in the same room. I awoke to find that she had opened the sudocrème and had coated her whole face and a surprising amount of the bedroom with a layer of thick white creme. We cleaned up in a panic and only afterwards realised we should have taken a picture!

Just as Manami was turning two years old, we made the move here to Singapore! She quickly expanded her foodie nature to include Singaporean dishes, most especially Chicken Rice. Manami loved joining in the exploration of her new environment.

Here we are on a trip to the Sister Islands, which are over-run with wild monkeys and someone has to be on guard with a long stick at all times (we called the stick “The Monkey 2000”, I don’t remember why). You can see Manami is very ready for her turn (with her practice-size Monkey 500).

Manami started nursery at Shaws Preschool and really blossomed socially, making great friends and being beloved by the teachers. During these years she started her exploration of art.

And her love of nature and all creatures also continued to grow.

At the end of 2015, three months before her own fifth birthday, Manami gained the first true love of her life: Little Brother Archie had arrived.

Manami loved and cared deeply for Archie from the very start. The love that Manami and Archie have had for each other has been wonderful to enjoy.

Archie has always looked up to his big sister with awe and when she fell ill he stepped up to help her along with everyone else and attentively cared for her - pushing her wheelchair and fetching and carrying whatever she needed.

When Manami started primary school at EtonHouse, she struggled to keep up with reading and writing. We discovered her eyes were not quite working together, which required years of vision therapy. Her Gran Thom also spent a summer with us for intensive reading tuition. Through her determination and courage, Manami fully overcame these obstacles and started to fully enjoy her schoolwork. Even after we moved away from the area and school, she sometimes liked to re-visit the school, she had come to love the place so much.

It was at this time that her abilities as a natural artist really started to develop. She started going to extracurricular art lessons and made pieces at a quality well above her age. Nature was already a constant theme of her artworks.

Here she is at the art school where they did an all-day project creating a Yayoi Kusama inspired room. At Fine Momentum she mastered advanced techniques and was encouraged to explore her interests through art which she also did at home and through all of her life.

As everyone remembers, 2020 to 2021 were a couple of years of dramatic changes due to the COVID pandemic. It was during this time that we moved from Tanjong Katong to Bedok Reservoir and Manami started at Middleton International School in Tampines. It was also the time when she first started to get more into music, joining the Vocal Associate’s Chorus of Young Voices choir and also taking up guitar.

Here she is on stage with Vocal Associates in 2021, and playing guitar with her Middleton class as they graduated from primary school to secondary school.

Because of her earlier challenge, Manami was a little older than her classmates but she anyway was a natural big sister to everyone in her choir and in her classes – making sure everyone was engaged and gently taking charge or steering when needed.

I’d like to read you some of a note that one of Manami’s Middleton teachers sent to us:

One memory that has stayed with me is how she made one boy in the class feel like he belonged.

He was an English Acquisition student in our Grade 6 class who struggled tremendously with his English. He made up for it by trying to be funny, but it often resulted in him becoming the subject of jokes and the last to be picked for group work. Whenever that happened, I would notice Manami looking to her friends and offering to have him join their group.

When he was with them, she didn't simply tolerate him in the way a "mature" student might. She genuinely engaged with him. She took the time to explain things kindly, supported him patiently, and appreciated him for who he was. That is what a truly kind and compassionate person does.

Once, after a period of growing tension in class, I asked him, "Who in this class do you think is truly your friend?" Without hesitation, he answered, "Manami" and asked if he could be seated with her. He was, and I believe that was quite impactful on his time with us (he left the school after Semester 1).

Beyond being an incredible friend, Manami was also wonderfully creative. Before her diagnosis, we were studying Roman history, and she created the most fantastic comic strip for one of our class assignments (group work, but Manami was tasked with all the sketches). It was so good that we displayed it in the classroom. I only wish I had kept a copy or took a picture!

I also remember the excitement on her face when she came up to invite me to a play she was performing in. Unfortunately, I wasn't able to attend, but knowing Manami, I'm certain she gave it her all and did brilliantly.

And brilliantly she did! I think that show was this one: The Lion King where she played the comedic character: Pumbah the warthog opposite Charlotte and down on the floor there is brother Archie as Young Simba!

As well as with Vocal Associates, that caring and compassionate attitude earned her an invite to support The Purple Symphony in one of their concerts.

Everywhere she went and each life she touched we heard the same sort of sentiments about our beautiful young lady.

In April 2024 we visited Hanoi and Ha Long bay. Manami had some headaches and nausea which we thought it was travel sickness or tiredness, and did not pay special attention. But we also saw that she was also uncoordinated and a little unsteady on her feet, however we did not relate these to each other.

Back at school her teachers also noticed she was unusually tired and her tennis coach noted that she was not able to move as fluidly as usual.

She finally admitted to our GP on a return visit because she was experiencing double vision. The doctor sent us straight to KK Women’s and Children’s hospital. We were admitted immediately and had an MRI.

Never will I forget the oncologist pointing out the extra dark grey mass in the middle of her hindbrain. A day later, she went in for a borehole surgery to collect a sample of the mass for biopsy. With those results our worst fears were confirmed: a high malignancy, aggressive tumor. It took a long time for us to fully understand. It did not feel real, even after we read some research and consulted with our medic friend on how to interpret this.

This was already heart breaking for us.

But not Manami!

“Darling, the scan and the operation both confirm that you have a brain tumour. It’s pretty serious.”

“Oh. Right… so… when can I go back to school?”

This was not the last time that Manami would remind us how important it is to go on living. She entrusted all decisions about her healthcare to the KKH team and to us and decided instead to stay focused on what she wanted to do.

Over the first few months we were straight into our first round of radiation therapy, but one of the drugs she was on caused a severe allergic reaction. A painful rash spread all over her body. This early set-back was luckily perhaps the worst of any pain that she experienced, but it was not nice. Her first priority when she had recovered was to make a beautiful thank you card for the ward staff who looked after her.

We learned a lot about how to manage an awful lot of medicines! And a couple of weeks out of hospital, she was back on stage with her father, her brother and the rest of the choir!

And of course she went back to school. Slightly unsteady on her feet and with a patch on her glasses to control double vision.

In October, though she sometimes struggled with energy, she anyway went on a field trip with the class around the civics district in her wheel chair, because nothing was going to stop her joining it. Her creativity grew as well – she built this Star Wars Clone Trooper costume from scratch. It took her weeks and this was at a time when she could get tired quite quickly.

And so the pattern went, she would eventually begin to sicken again, we’d change up the medications or embark on another round of therapy. This is the proton therapy machine, behind the wall is a particle accelerator that is as long as this church. This bed swivels and moves so that the beam of protons will precisely zap the tumor. The door to this room is two meters thick and there is a control centre room that looks like it could fly a spaceship!

The sci-fi machine was effective, she recovered a lot and get straight back on with her life.

We saw this cycle of getting better for a while but then quickly declining several times over the 2 years. A couple of times we thought that the end was coming, but she kept bouncing back again and again.

She went to school as much as she could and developed her own strategies of coping with it all. And whenever Manami was really not fit enough to go to Middleton, she made her own judgement to switch to the Children’s Cancer Foundation’s PALS support school.

At PALS she became big sister again to other kids facing the same sorts of challenges as her and there she could also work extensively on art with some awesome volunteers.

Last summer, With the help of Make a Wish Singapore, she made a last overseas trip all the way to London, meeting one of her old school pals, and then on up to Scotland for Grandad’s 80th birthday party. She’d firmly told Grandad that he was to have a party, and that she was coming for it.

Manami again decided that she had enough energy to go back to Middleton and she wrote message cards and goodbyes to the PALS support school teachers. In Term 4 of last year (apart from only a few scheduled medical appointments) she managed to attend for the full term. With one of us on stand-by to help Manami climb up and down stairs and with great help from classmates, this was a great milestone.

She was amazing during all of this time, she was highly spirited and determined through everything. There were lots of heart breaking moments, like when she lost her speech and most of her mobility, but she always kept life fun – joining in with our games nights and regularly beating everyone at poker, Scrabble or Rummikub.

Our Scrabble set is a “Star Wars” Scrabble set – you get bonus points for Star Wars words. Manami’s encyclopedic knowledge of Star Wars character names was a distinct advantage, but she really was adept with vocabulary and mathematical intuition, such a long way from the little girl who once struggled to learn to read.

For as long as she could hold a pencil, she was still drawing art. As long as she could climb stairs she was still going to school. As long as she had strength at all, she was still celebrating life with her family and with her friends.

Manami filled her time as well as she was able, but inevitably her time finally began to run short.

By the end of June, Manami had already lost her voice and almost all mobility again and she suffered a seizure that would take her to KK hospital for the last time. Although we were able to get the seizures under control and ensure that she was comfortable, she did not really regain consciousness again.

On 6th of July we took her home – a palliative transfer with a medical team to ensure she stayed stable and comfortable for the journey.

The HCA hospice StarPALS team helped ensure that we could meet all of her needs at home.

And we stayed with her, and reminded her how much we loved her, right up until the end came.

We could not have made this journey with Manami alone. We would really like to thank everyone that helped us.

All of our friends, across all of our various communities, and family - everyone who knows and loves us and Manami - have all helped us in some way over the past two years. Thank you all for your support. You helped keep us going and to focus and enjoy our own lives too. You all helped make this time the best we possibly could have had.

We were also blessed that we were in Singapore for this - safe and well resourced and we were able to receive excellent medical care.

Thank you everyone who sent us beautiful flowers over the past few days. Gran Catriona Thom picked at least one flower from each of them to make this arrangement we have here today. Thank you also for your very generous condolence gifts, which will be donated to CCF, HCA StarPals and Make-a-wish. We’ll talk more about them in a moment.

For helping us through everything over the past few weeks we are thankful to the whole of the St. George’s congregation and the members of the various ministries who stepped up today to help open the church and stream the service to our friends and family abroad and especially to Reverend Joshua. Thanks all of you, we could not have got through any of this without you.

In Middleton International school, all of the staff turned the school upside down to make it as easy as possible for Manami to keep attending, especially Ms. Susan who has been an absolute rock of support. All of the staff though encouraged and supported her. When we were accompanying Manami, getting to know all of you was a welcome bonus.

Manami’s friends in the G6 Motivation, G7 Respect and current G8 Grit class are wonderful young people who took Manami as she was and quite literally helped carry her through. While in G6 she missed a lot of school for appointments, but with the help of her friends she was still able to thrive. While she was in G7 Respect she needed more help and the kids all gave her sure support, we heard one friend say to her “Don’t worry, I’ll catch you if you fall.” In G8 Grit she was in class only for a very short time but was always hoping to rejoin you. The birthday message you sent from the class was fantastic, she literally cried because it made her feel so cared for by her friends. We love you guys forever.

As Manami’s condition worsened, the risks of making an overseas trip increase. An unexpected change of her health could leave us stranded. Make a Wish Singapore ensured we had cover for dealing with such an eventuality and we successfully made the trip that Manami had wished for so hard.

The StarPALS team from the HCA Hospice have also been engaged over the past year and really did create good days as we neared the journey’s end. They started coming to see us once or twice a month, patiently building trust with us for when we would really need them. They gave us invaluable guidance on how to best care for Manami at home at every stage. They enabled a smooth transition home and then attentively helped keep Manami comfortable and safe, right up to her last moments.

Having her final days at home with us be comfortable and calm was so significant to us. Thank you for helping us bring Manami home.

The Children’s Cancer Foundation staff and teachers at their PALS school service have all been incredible. They have helped us from the very beginning, helping to light our path through difficult choices and helping Manami reach for her goals.

There were loads of ways these guys helped us, some very big (like the awesome PALS school service!) and some very small (like digging up a small table in the hospital so we could use a laptop by her bedside) or so nuanced they might pass un-noticed. Families only go through this once and only have one chance to try and get things right; CCF are there for that - they are coaches, cheerleaders, they are true friends.

CCF, StarPals and Make-a-Wish are all charities and every corner their work touches is filled with a warm atmosphere. They are supported by a lot of volunteers of all ages and we saw them doing stuff like playing board games or providing cool extra curricular activities like crafting or special learning sessions at PALS school and we are sure they do a lot more behind the scenes too. A StarPals team even came to our home and gave Manami a full spa treatment right in her bed! One of Manami’s artworks is being used by CCF on a coaster that is given to volunteers as a token of thanks. And we also thank every one of them that helped Manami.

Finally we are so grateful for the dedication of incredible medical professionals at the KK Women’s and Children’s Hospital: starting with the children’s oncology and palliative teams and including all of the other departments and wards Manami visited including the wonderful staff in both the Children’s Day Therapy centre and Ward 76 plus all the staff in the external radiotherapy clinics where we received treatment.

Treatment of a complex, dynamic illness requires expertise and agility. It was eye opening to us to see such a huge team involved in Manami’s care - the oncology and palliative teams were always at the centre, but so many other people would get involved as needed: dermatology, neurology, eye specialists and more and of course the radiotherapy clinic teams. These guys all acted as one big Team Manami and her life was measurably improved because of it.

That we would be here, doing this together with all of you, was inevitable from the moment we first saw that grey blob on an MRI screen, two years and three months ago.

Let me tell you that Manami had a great couple of years! And we all had a great couple of years with her – we learned a lot about the complexities of diseases like Manami’s and the challenges for carers helping someone through them. And we have met so many souls from all walks of life who have helped us, or are navigating their own way through dangerous diseases.

Throughout her journey, Manami never settled for being just a patient – at every turn she chose to live. And she taught all of us so much about passion, compassion and care. And about faithfulness. And about love.