Mother of 3-year-old "Courageous Caitie" pens heartbreaking reflection on daughter's last hours of life

Thousands followed Caitlin Soleil Lucas's painful struggle with a cancer that hits about 3 in every million children.

Jeanette Tan| April 02, 04:12 PM

You may or may not have heard of Courageous Caitie, but her life story — especially the last six months of it — has moved thousands of hearts in Singapore.

Caitlin Soleil Lucas was a three-plus-year-old, who spent the last three months of her life fighting juvenile myelomonocytic leukemia — an extremely rare form of cancer that affects roughly three out of every million children under the age of 4.

Symptoms of rashes, lesions and abdominal pain first started showing in September, and these were followed by an unending cough, anaemia, fever, diarrhoea and difficulty in walking.

The trouble was, doctors in the Philippines (where she and her parents, Jayjay, a photographer, and his wife Feliz, a fashion and engagement stylist, are from) were unable to figure out what it was. She spent more than 50 days in hospitals there going through 33 doctors and painful tests, and flew with her parents to Singapore, where she was finally diagnosed with it.

Photo from Courageous Caitie's Facebook page Photo from Courageous Caitie's Facebook page

After going in and out of the intensive care unit, she breathed her last in her mother's arms on March 31, 2016 at the National University Hospital.

Here's how we know her story moved many in Singapore — this is a video made from footage taken at a one-night wake held at Sin Ming Drive, attended mostly by strangers:

The Lucases have raised roughly US$167,000 in two online campaigns (you can donate to one of them here if you wish), and more through the sale of donated merchandise, a benefit dinner and a couple of other events organised by friends, family and well-wishers, to help defray their daughter's treatment costs. Her bills, according to a blog post by her mother, accumulated to three times their combined savings.

Overnight, Feliz Lucas penned a heart-wrenching account of her daughter's final hours on Thursday — we reproduce it below in full as the Lucas's blog site chronicling their journey is down from exceeding its bandwidth:

The moment Caitie’s oxygen level was just dropping to 17…to 3…to 1, I knew it was time. I still held on for a miracle that her oxygen level would rise up, she’ll be stable and everything in her body would reboot. But it never happened.

That morning, she was still having a hard time breathing and we decided to intubate her. I feared i might face death because past history, the doctors didn’t want to sedate her bec her stats might drop. But her oxygen level was at 8 and her she only had 50/100 from a 100/100.

It was so hard for her to breathe through her mouth and I explained to her that we needed to intubate her. I showed her and explained to her what it was like. She said no but I explained we had to to help her. She nodded yes. I told her that while she was sleeping, I told her to just look for Jesus. To call to Him and tell Jesus that she needs Him to help her with her lungs. I told her that it might be difficult to open her eyes afterwards but she could hear me. If she did, I needed her to press on my hand. We practiced it. She raised her brows and pressed on my hand every time I asked questions. Then I told her Caitie I love you so much but I can I hear you say it to me. She followed “mom, I love you” with much difficulty. And for one last time, I told her dad to have a family photo. I asked Caitie to try her best to open and eyes and smile really quick. And so she did. Prior to this procedure, it would really be difficult to make her eyes open and make her smile, but this last pic was a treat.

After hearing the doctor tell me “Feliz this is not looking good” It was honestly easy to say, ” it’s ok. You can let go.” To the doctors because I knew what it would be like if the organs didn’t receive enough oxygen and we started at 8am and it’s already 11am. We talked and agreed not to do CPR if she flat lined. Her heart was good but her lungs failed her. The lungs got too hard to pump air. Even with a ventilator, ventolin, meds, it would respond half way to 30s but drop to 3 again. If a machine or hand held couldn’t do it, I think it was time.

We talked to Caitie and told her “I’m so proud of you. Mommy is so proud of you. I love you but Jesus loves you more. Of everyone in this room, Jesus is the one who mostly wants you healed. More than mommy. it’s ok, you can run to Jesus and stay with Him” “it’s ok, I love you so much and we will see each other soon. Prepare things and enjoy heaven. Laugh, jump, play, sing and dance. It’s ok. Just run to Jesus and stay with Him”

I asked the doctors if I could carry her. I wanted her to slowly go in my arms. And so they did. I went up the bed and embraced her. She gasped on reflex twice and that was it. I layed her down so they can check her heart rate. It was zero at 11:46am of March 31, 2016.

I didn’t scream not bawl. I cried. Then Jayjay took his turn and carried her in his arms. We took out all the wires, cleansed her and waited for her to be picked up. Jayjay held on to her lifeless body for around 30 minutes. When he brought her back to the bed, reality struck in. No more wires but she was lifeless. Her chest was still warm and I kept my hand there. It was the last to get cold. And then I started to bawl and scream. And I realized that I was in so much pain. Dying was easy. Moving on was more difficult.

I tried to keep my composure because I knew I could but then I ended up loosing it. I cried so much because the pain was just unbearable. I asked exactly again how things happened. I needed reality to hit me hard and not wish it was a dream. I didn’t want to soak myself in pain. I wanted to move on.

I would tell people that I want to move on, because I know she’s not in pain. I’m happy for her but I just simply miss her terribly. How do I let go of the pain that’s unecessary. It was just self torture. I couldn’t process things correctly.

I broke down while waiting at the undertakers place. Unlike in Manila that you view the embalming, here it was private. When I went it to check on her body. I couldn’t believe my eyes. Not because she was dead but because I got so shocked on her real size without the water retention. Cancer ate up her body. Plus I didn’t like how they fixed her body and face.

We went back to the condo so I could choose what I wanted to keep and what I wanted to let go. It was so tough. Everything she did in Singapore was more than a boxful but I had to choose. Till the very end, the last thing she wrote was her name CAITLIN. I call her Caitie but do you know that she like to be called Caitlin instead of Caitie? She said because it was her name.

When we left the condo to head to Sing Ming. I couldn’t believe my eyes. The place was flooded with people. Only 3% of them I knew… These were strangers. All crying. I was so encouraged that my daughter’s pain was not in vain. These people’s lives have changed on way or another. I don’t know how but that fact they are here and crying… even the men, I knew something stirred in their hearts. the people made a bare room so beautiful. The room filled with people singing, crying and people praying, painting and writing, it was so beautiful. The message of the pastor was just so beautiful too. We all say Caitie’s lullaby Jesus loves me and Jesus loves the little children.

To be honest, I really broke down and was so melodramatic. I honestly believed I wouldn’t be and I couldn’t believe that I was screaming and bawling and was on my knees bec of the pain of being separated from her. I had a lot of questions and no one could answer. I asked how they moved on when their child died, most people would say even until now, 3 years, 5, 7,10, they still feel the pain. They couldn’t give me a concrete answer. And I felt all the more in fear because I seriously wanted to know how to move on and it seemed like I was going to be stuck with this for a long time.

When my sister came, I had a lot of questions. I knew she wouldn’t lecture me but would tell me what I needed to hear. This time, we both didn’t have answers. We always had answers but this time we didn’t. How come God revealed so much promises and stories about restoration and abundant life and healing but this didn’t look like it. Jayjay’s family came with Ethan and I felt more at rest and pre occupied with Ethan. We went home and slept.

The morning after, I woke up thinking about all the things I was thinking about the whole night we slept. I tried to feel the hands of Caitie as I held Ethan’s, her shoulders, her tummy, her legs as Ethan rolled all over me. I broke down in the comfort of our room and my sister just received all the questions I had. I broke down for a good 2 hours and so I had to move on and be ready to bring Caitie’s body back to Manila.

I would feel ok and stable then suddenly break down everytime there would be an item, a food, a memory about her. I ended up melodramatic again and just hugged her casket and talked to her.

At the airport, I had my first decent meal where I finally felt hungry after a day of just 2 spoons of food and mostly water or Coke or wintermelon juice. I broke down again because I couldn’t believe the family was eating together and she wasn’t with us anymore. That I was bringing home her body and it’s going through the cargo load and not a decent seat.

As Ethan’s energy preoccupied us, I realized I needed to make time for my son. I’ve neglected him and everything was hand me down and set aside bec I needed to attend to my daughter. So we went to the toy store and finally bought a water bottle, just for him. No longer for him and Caitie. We bought a trunki for him bec she uses Caitie’s pink hello kitty bag. He loves it but he needed his own. we bought an iron man toy bec we had fond memories of Caitie watching iron man in Singapore. Whenever we watched iron man, she would ask so many questions and say so many things non stop that I grew tired of answering them. It was my best conversation memory this year with her.

I waited for her casket to be loaded and I finally saw it. She had her own container and Men carried it up on board. The casket where Caitie was placed was exactly below our seat.

During inflight, Jayjay and I were browsing at Caitie’s videos and we got to talk. After watching, I told him, I’m ok now. We watched so many videos starting march of 2015. What I was saw beautiful and I felt ok.

I cried prior bec I’m going to miss out of what could have been but after watching the videos, I realized it was the best 3 yrs and we couldn’t have done it even better and the way things ended felt like a good finish line.

I no longer need to yearn for tomorrow with the hope of having her around. As I look back growing up, I realized the best part of it was 5 yrs old and below. Everything was fun, love and play. Then grade school and studies happened and high school, love life, college, career etc. I thought I would miss out on having her go through a debut but after watching the videos, I realized I didn’t need to go through another year or another month of Caitie.

We lived a complete, and love filled home. There were no regrets. She was secure. Secure that we loved her and secure that Jesus loves her. And being secured on your love for Jesus makes your strong in your battles.

Now I know why she was strong… Because she was secure.

For now I feel ok and it feels like I won’t need to break down anymore. But let’s see. When I close my eyes and see her, and all that has been and start to hope as to what could have been, I just remind myself that I need to be secured that I don’t need to live another day bec of Ethan or my husband or my family. I will live another day because just like what I did with my yesterday’s with Caitie that I made everyday be filled with love and the best that I could be in work, as a parent and a mom…

I need to continue to do this for my tomorrow so each day will be beautiful. that’s how you move pass the pain. You focus on what kind of beauty you can bring for today.

I realized that for me to be strong to get through life without her is to be secured that Caitie indeed loves me and that Jesus loves me. And everything happened exactly the way it should. And tomorrow will happen without Caitie because her mission is finished. That we built her up so well and she was able to finish her work faster than us:)

I’m glad we took as much photos and videos we could… Don’t believe the articles when they say you should enjoy the moment and not take photos because you can be part of the videos while you take it and enjoy it:) and it’s just so wonderful to look back to:) You get encouraged and reminded of how beautiful yesterday was so that you can hope again for tomorrow.

Now back in the Philippines, the Lucases will have a funeral service in Manila on Saturday evening for Caitie. The late toddler's body will be cremated on Sunday.

 

Top photo: Courageous Caitie's Facebook page.

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