Girl with Rare, Terminal Cancer - “I still want to fight!”

Video Music: www.bensound.com 

Weighing just over 90 pounds and extremely frail, one leg is as thick as her waist. An eight to nine-inch tumor makes every step a struggle. After eight months of consultations, she went from being told, "You have muscle inflammation!" to finally being diagnosed with the rare "osteosarcoma."

"It's stage four; there won't be a fifth stage!" Despite doctors stating she has only three months to live, she firmly refuses to give up: "I'm not afraid of dying, but I must insist on living!"

Seeking Treatment for 8 Months: Misdiagnosed as Muscle Inflammation

“I got diagnosed with ASPS - Alveolar Soft Part Sarcoma - in March this year. It is a kind of bone cancer.”

In July last year, Colour (LO Wai Nam) had an accident at home in which she had an injury around her pelvis. Since then, she has never lived a day without immense pain. “Sometimes it would hurt so bad in night time that I would not be able to sleep, twisting and turning - not unlike those victims in the Exorcist!” Colour went in and out of the hospital numerous times, seeking help from a dozen of doctors from all sorts of specialites, who had all jumped to the conclusion that it was muscular inflammation and dismissed her after prescribing regular pain killers and muscle gels for her. “How is it possible for a simple inflammation to hurt that much, and last for that long?” Colour requested for further investigations from these doctors, but kept getting rejected as they all didn’t consider it necessary.

Towards the end of last year, while the intense pain sustained, she started having high fevers and losing weight drastically. “I was devastated and desperate, because there was no way to get better.” She was eventually referred to another TCM doctor, who had recommended her to get an X-ray for consultation with an orthopedist. That’s when she finally found out the source of her dreadful pain - there is a very rare malignant tumour in her pelvis, which had by then already spread to her lymphatic system and lungs. “The doctors told me it was in Stage 4, and that there would not be Stage 5 - because I probably would not live past that,” Colour recalls.

"My thigh is swollen like my waist, and it feels like it could burst."

Colour might have sounded indifferent, but her calm tone did not conceal her desperation from the continuous pain, which has been making it difficult to even just stand up. During our interview, Colour had been restless and couldn’t sit still, because she needed to keep shifting and finding new posture to alleviate her pain from staying in the same position for too long.

Unable to absorb nutrients from her food efficiently, she gets tired very easily, her body frail from the weight loss as well. Her boney frame contrasts largely to her right thigh, which appears almost as thick as her waist.

“The worst part is the swollen thigh - it feels like it may explode any minute,” Colour shared her frustration over her right thigh, which has swollen tremendously to a circumference of 22.5 inches, whereas her left thigh only measures 16 inches.

Agnogenic symptoms, unfortunately, is a woe commonly suffered by patients of rare diseases. “The doctors don’t seem to fully understand why this is the case, either. They suspect that the swelling could have something to do with some dead tissues in my bones,” with swollen tissues in her right thigh pressing on her nerves, together with blisters at the bottom of her feet, Colour is in so much pain whatever she does. Even though the bathroom and kitchen are only a few steps away, Colour will still have to lean on cranes and wheeled chairs heavily when moving around her small apartment. From time to time, her family will come over to help out with daily chores and prepare meals for her, as she is bedridden by her immense pain most of the days.

“The pain only gets worse, never reaching the worst”

Regular painkillers can no longer ease my pain." Now, Colour has to take morphine daily, starting from half a pill to as many as four, but the pain still hasn’t let up. "The pain is intense; it feels like it's coming from my heart. My whole leg hurts, so much that it wakes me up. I can't sleep at all." Colour often wakes up in pain several times a week, and without enough rest, she remains in a constant state of fatigue.

In conversations with Colour, it’s clear that she frequently repeats herself, as if she’s never said it before. "I take so many medications that I keep forgetting! Wait, have I taken my meds yet?" To help herself remember, she has put up a blackboard to track her medication schedule.

ASPS (Alveolar Soft Part Sarcoma) accounts for just 0.1% of all malignant tumors, making it a rare condition with no current treatment options. Targeted therapy, radiation, chemotherapy, and surgery have all proven ineffective. "There's only one type of immunotherapy injection that can help control the progression of the disease, but it won't cure it." With no choices available, Colour's only option is to use immunotherapy to prevent deterioration.

The doctor pointed out, "You haven't raised the funds yet, so why are you here? You're wasting everyone's time!" Each immunotherapy injection costs $20,700. Originally scheduled to start in March, Colour had to wait until late May to receive her first dose due to fundraising delays. After that, she will need an injection every three weeks, starting with four, and may have to continue for up to two years, depending on her condition. However, even after three injections, the swelling in her leg remains severe, and she can only wear sandals on her right foot.

"Because the cancer has not spread to the brain, funding is not available."

Grateful to have encountered my former self

During the interview, Colour expressed occasional complaints, but more often, she conveyed gratitude. In her eyes, there are always good people doing good deeds. She has received help from many and does not take it for granted. "I'm really grateful for the friends who volunteer to help me. If I get better, I promise to give back to the community even more." Before her illness, she had been a volunteer for eight or nine years and had contributed both time and money to organize various events. She mentioned multiple times her hope to join Lifewire to help other sick children once she recovers.

"Treasure everyone around you, cherish life, and appreciate everything you have; you never know when there might be no tomorrow..." A serious illness has given her a deeper understanding of these truths.

"I don't really want to die."

"Why was I chosen?" Reflecting on the moment she first learned she had a serious illness, Colour completely broke down and cut off contact with all her friends. "Many friends called and said they wanted to visit me, but I just couldn't accept it." With a strong will to survive, she quickly adjusted her mood upon realizing that negative emotions could worsen her condition, gradually accepting this reality. "If the heavens want me to accept this, and they chose me, then I have to walk this path."

Looking back at Colour's old photos, in her prime, radiating a vibrant glow, it makes the present version of her, so frail, even more poignant. Yet, she speaks to herself with motivation, bravely facing the situation and actively seeking treatment. "The doctor said I only had three months to live, but I've already passed those three months. I feel like I'm going to get better! I'm not afraid of death, but I must insist on living!"

"I don't really want to die! In fact, I was thinking about getting married and having kids. At my age, I don't think I should lose my life!" Looking at the "trophies" in her shoe cabinet, Colour calmly says, "I bought these shoes before and never wore them. Now that I don't have to work, I can't wear them. I'll wait until I'm better to start collecting nice shoes again!"

 

At this moment, she has only one goal: "I hope the medication can spread through my body, so I won't need to use a wheelchair anymore. I want to be able to live independently, eat by myself, go to the bathroom, walk, and go out... I hope to return to being a normal person!"

採訪、撰文：林穎怡、梁劍紅
編審：梁劍紅、Avy Ip
攝影：Sea.Pho.Yea
影片製作：Lifewire、Aiden Mak、Sea.Pho.Yea

This cause's reference number is「 3615 」

Donations of HKD$100 and above are eligible for tax deduction.
If you would like a donation receipt，please download the「Application for Donation Receipt」form. Please submit the completed form along with a copy of bank-in slip/cheque to info@lifewire.hk, or by post.　

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緊急！Urgent！

有冇人可以幫到手？

Oscar好乖，親近人，識去廁所，只有兩顆爛牙、少許白內障，但仍健康活潑的。
請聯絡 : 6290 9985 梁小姐 

【Colour圓婚紗夢】

「我宜家唔痛喇！」「好感動」

穿起婚紗的Colour，忘卻骨肉癌的痛楚，流下感動的眼淚，不斷道謝。
 
她與狗狗Oscar許下承諾，「呢世我照顧你，下世你照顧我」。

 

 

為了幫Colour圓人狗婚紗夢，大家一呼百應出動；為了試婚紗，抬着數十磅的電動輪椅上數十級樓梯，披荊斬棘。

惟看到Colour重現笑臉，大家只覺一切也值得。

集結力量，繼續送上愛與祝福，歡迎到Facebook留言打氣、捐款或分享她的故事。

鳴謝各方好友
婚紗提供：1.618 Couture & Bridal
攝影團隊：Ace、Abby @A+Mission
化妝及髮型：Joe W
義載：Fai & 黃先生
採訪及拍攝：Lifewire、Sea.Pho.Yea、米紙
統籌：海、Rochelle @Lifewire

2021年8月更新

【號召成功】義工送家中

身體虛弱的Colour，早前家中受爆渠困擾，不慎傷及腰臀。
幸好各位得悉後，都立即踴躍報名成為義工，希望可以出一分力幫助Colour。

 
上星期六Lifewire和有心人Jackie、Bowie出動，到Colour家中幫她家居大清潔、執拾雜物等等。

之後大家都陪伴Colour暢談一番，使她恢復了精神和活力。

「大家同我傾偈、陪我，即刻冇咁痛 」
可惜地方有限，所以未能安排太多義工， Lifewire日後將會再安排其他已登記的義工進行探訪。

請大家一起為Colour打打氣，讓愛漫延。
歡迎到Facebook留言打氣、捐款或分享她的故事。

2021年6月更新

偶然看到Lifewire分享個案Colour Lo的情況後，香薰花園 (Aroma Synergy) 的創辦人Vivian主動聯絡了我們，希望可以安排探訪。「作為香薰治療師嘅我最想做到，就係可以幫助身邊嘅人。」看著Colour言談間不時流淚，過來人的Vivian與 Colour 分享自己以往的患病經歷，憶述她在第一次接受輸血時也哭了，但她形容這全都是感動、感激和開心的眼淚。有緣千里來相會，意外得知雙方的生日都是在同一天，她們就像情同姊妹般彼此鼓勵。

「希望能用我最大努力可幫助她舒緩壓力及痛楚。」Vivian 以香薰油為Colour 按摩，又教她簡單的自我按摩法，令Colour十分感激。探訪接近尾聲，臨走前 Colour 主動與 Vivian 握手，彼此四手緊握良久，Colour 將自己內心的感謝完全傳達給有心人，Vivian 亦留下按摩油給Colour 日後使用。

這次探訪，給Colour 帶來正面力量！「我們無法選擇病與唔病，但可以選擇勇敢去面對，我希望每個人都可擁抱健康及快樂。」

2021年4月更新

你們的支持賦予我力量

「我唔怕死，但我一定要堅持去生存囉！」
求生意念超強的 Colour ，每三星期便要注射免疫治療針或服標靶藥「吊命」。
免疫治療每針$20,700，但你們捐贈的不僅是金錢，而是贈予她一個生存的希望。
已努力捱過連串治療的Colour，仍抱著「我會好返」的信念活下去，你們會支持她嗎？

請大家參與每月捐款，給予Colour 生存的信念。
 
2021年3月更新