Golden Butterflies Childrens Palliative Care Foundation Chennai

GB Stories/Blogs

“WHICH COLOUR DO YOU CHOOSE?”

xxx was a tiny figure, lying on a small bed, with his mother sitting beside him. Had I not known, I would have guessed he was 7, not 10. Acute Lymphoblastic Leukemia (ALL), a type of blood cancer, is notorious for impaired growth. The medicines controlled the pain but there was no masking the anxiety and sadness in his eyes. He just lay curled up listlessly. He did not have to speak for me to hear – “take me home; I want to play with my brothers and sisters.” While he had managed to tear the wrapping off a treasure bag he had been given, the stiff packaging of the colour box and drawing book were too challenging for his weak hands – so they just lay beside him.

I gently opened the drawing book. I began to draw a small butterfly, as he watched with curiosity. He slowly lifted a colour pencil and made his first mark on the paper. We did not exchange words, we traded colours. I pretended my fingers were bananas and clapped gleefully whenever he finished one part and took up another colour pencil. I saw the first shy smile. We played together for a while – I drew, he coloured. He gave me the broadest grin and waved when it was time for me to leave.

xxx died shortly after my visit. It was not unexpected, as every day of his brief life had been a battle. He had faced many obstacles - social, emotional and physical. However, for a few golden moments that day xxx was able to be just what he was – a child…..and enjoy his right – to play.

“WHO IS READY FOR A GAME?”

We were glad to support child-patients families with groceries and nutritious food. Families of many of our patients, being daily wage earners or from out-of-city/state, can no longer go out to work, and consequently cannot afford living expenses. Child-patients’ growing bodies need additional nutrients to cope with the medications, and absence of basic nutrition and hygiene also threatens the safely of the already-immunocompromised child. While we provided nutritional support in the form of groceries and hygiene kits to some impoverished child-patients and their families.

I am 15 years old. I used to love going to school and playing with my friends, but not any more…..because I am so heavy! I feel so ashamed! This is all because of those medicines I have to take for Acute Lymphoblastic Leukemia (ALL), a type of blood cancer. Thanks to this disease and its treatment, I lost all my confidence. I was sad!

One day. When I came to hospital for my routine check-up, Golden Butterflies was organizing some art and recreational activities. My mother asked me to attend the session, but initially I was not interested. I had lots of doubts. But attending the first session made me feel so happy…… after a long time! I was able to mingle with other children and I was encouraged to come forward and perform. I started attending their monthly sessions regularly. Through craft and art activities I was able to imagine and create new things.

Slowly I gained back my confidence and made new friends. Now I go to school and play with my friends happily.

Mother (care-giver) – “I am so happy to see my child smile and laugh again!! I am reassured when my child is in the GB Bandwagon session because she is able to be herself and communicate with other children, like she used to before the illness. It is also exciting to see her doing various activities which brings out her creativity and improves her confidence.”

We are just so happy to see the children come and have so much fun that they forget their pain for some time. The bonus is the smile on the parent’s face….which is much harder to come by, any day.

“John (Intern) Hindustan College of Arts & Science”

To start with my experience in Golden Butterfly, it is in fact an unexpected visit which turned into a completely different experience enriched with learning. When we went and enquired about it for the first time, the innovative projects such as GB here for U, GB band wagon, GB Brick by brick and GB cocoon caught our attention and pushed us to take a decision to do our internship there. Not only were there projects catchy but they had a clear vision and a motive for the same.

With huge excitement about the work we would be expected to do as well as a little nervous about the place, we walked in, but to our surprise, they made us feel one among them and oriented us to the environment. Our first day was subtle but as time went by as interns and as we interacted with child-patients and their caregivers it was full of emotions. GB, being a palliative care facility, groomed us personally as well as professionally in cancer rehabilitation by helping us learn about the different types of cancer and overview about the management, bedside counselling, counselling the burdened caregivers and the debilitating children.

My personal experience in GB extends well beyond a normal intern as they made me take critical decisions and gave leadership by mentoring the other interns. More than being empathetic I felt grateful with what I have as I painfully saw the young children enduring sufferings and I had many such events which eventually changed me into a better person. We learnt that this life is meant for living and making everyone happy as much as we could. We also learnt that we should be there for people not just listening to their problems we learnt to do something in action to help them overcome it. After being interns of GB we realized self-centric life is nothing and living for others creates ultimate happiness than anything in this world. God had everything planned for me! All my life I hid my sorrow under a smiling face but this place wiped it all away by giving me eternal happiness!

The professional learning I received is so vast starting from how to make powerful presentation and present it well, to teaching the management and organisational skills and the value of teamwork. The work culture was entirely different which made us feel at ease and they also conducted various sessions such as art therapy, three levels of perception and other such programs for us. One particular aspect I learned from GB is to modulate my emotions properly as they helped me to regulate the overwhelming emotions I went through as part of the process of palliative care among innocent young children.

To be honest, it was a privilege and an immense blessing to have worked in GB. Though we might have worked here as an intern now, we would always be the wings of Golden Butterfly, flying up high taking up the nectar of positivity to the world.

SWEATHA (INTERN) - Madras School of Social Work

Have you ever been satisfied and felt happy in what you do? A big "YES" from my side, working in Golden Butterflies Children’s Palliative Care Foundation made me say this "yes". From this organization, I got an opportunity to help a caregiver and a child patient who couldn't travel often from Tirupati to Chennai. On 18/09/21(Saturday), a caregiver from ICH, Egmore asked me for help. She called me and told me that her daughter has been discharged from the hospital, she needs to stay nearby the hospital. They couldn't afford the stay as well as the food because they are underprivileged. I contacted Ms. Rama, project head of golden butterflies, asked her for help.

She Contacted a person in can stop organization and they told that there is an home available next to ICH, Egmore. Ms. Rama informed me and then I told the caregiver about the place, they were fine with the place, until then they took a room and stayed there for a night. On 19/09/21 (Sunday) I went to the caregiver's location, picked an auto and took them to the home care centre. I explained all the rules and regulations followed by the home care centre, because they don't understand and speak Tamil. I left them there and made them feel free and comfortable.

They were so happy and the caregiver started crying and she told me that I've been her saviour. That one word made me feel proud of myself and was satisfied with what I’m doing. Thanks to Golden Butterflies Children’s Palliative Care Foundation for being there with me and guiding me, also thanks a lot for great Learning and wonderful experience.

VISHNU PRIYA (INTERN) - Madras School of Social Work

Interning with Golden Butterflies is one of the best things that has ever happened to me! This august opportunity made its way to me in the mid of August & I must say, this stint of 1½ months has been the bestest moments of the entire 2021!

The mile here is very friendly, yet upholding professionalism. I've always thought fun & professionalism would never go together- which after coming here was proven wrong!!

Not just our mentors who were guiding us, but also the other trustees of GB were very friendly towards us & encouraged each and every steps that we'd taken.

Ohh and to talk about my experience at ICH...Trust me you'll love it! Initially, I had preconceived notions about Cancer Children’s. My very first visit shattered all of it!! Yess!! That is when I understood that kids will be kid’s matter where they are, what their condition is.

The charisma they reflected really allured me and made me feel more lively whenever I worked with them. It's their energy that kept me going, and boosted me to do even more for their betterment. It is not the disease which was infectious, but their energy was damn infectious!

The concept of "Informal Education" was totally new to me when I came here. But in the due course of time, I think I've mastered this skill!

Follow these steps to know the secret of acquiring this skill. Which is- For a moment, forget who you are, what you're doing...Refrain yourself from all the negativity & oscillating thoughts...just think of your childhood...the things which made you happy...the moments which were very close to your heart...Re-live your childhood phase...Feel the kid in you...

Now you think of the things that will intrigue you & motivate you to learn. And yeah!! This is it. When you feel the kid in you, you'll reside in the mindset of a child & come up with lovely ideas to work with them. Ultimately, you'll find an irreplaceable place in the hearts of these lil lives!

The simple mantra to be remembered whenever you are working with the Children’s is "Feel the kid in you & do whatever you love!" Stop thinking this as a task which has to be accomplished! Instead, make yourself comfortable & become a friend to the Children’s and see all the wonders that will happen !!

I take this moment to thank Golden Butterflies for giving me such a wonderful opportunity to work with them. I've not only gained professional experience, but also have definitely learnt and acquired many values for life!

GB has become more like a family to me now It was quite hard to leave the office on the final day, holding up the tears- which were dazzling like a rain drop at the corner of my eye.But that is when GB, "again" made me realise that no matter how far we go, family will be always there for us, awaiting our arrival!! I knew that they will be always there for me.

I whole heartedly thank Ms. Clara, Ms. Rama & Ms. Stella for moulding me into a better version of myself! "It feels good when someone says take care; but it feels great when someone says I'm here to take care of you! But you know what??! Knowing that GB will be there for me to take for me made me feel superb special!!"

SHARON GIFTA S (INTERN) - Madras School of Social Work

Palliative!!!

Have you heard this word?? Okay you might... but this term was very new to me! Especially Paediatric Palliative!? What is even that?

After I came to Golden Butterflies I came to know the meaning of Palliative and Paediatric Palliative care. Golden butterflies didn't stop with that! They taught me how to handle Children’s and they made us to realize how blessed we are!. And also we went in a group to do internship in GB, the bond between us also grew along with GB. We could clearly see the difference between us before coming to GB and after we came to GB. I had so much of learning’s and lot of new experiences. I loved working with Children and I am happy that i was able to do something to the Children’s through GB.

SUVEDHAN (INTERN) - Madras School of Social Work

Everyone can learn, but not everyone can teach. Here I learnt to teach, I think that's what Golden Butterflies is. The special and unique thing about GB is they'll correct your mistakes without hurting you, we can't find this type of attitude in many places.

You'll have fun, laugh, game, freedom, exposure with learning and sometimes free food too, at the end you'll question yourself; what more I want?

As an intern you will surely get your wings while leaving GB, I assure that will be the moment where you pretend to not cry.

MOHAMMED FAZIL (INTERN) - Madras School of Social Work

It’s challenging, both physically and emotionally. Believe it or not, most families describe some positives and negatives that appear through the pain as well.

No matter what age someone is at diagnosis, cancer is devastating. But when it comes to treatment and research, childhood cancers and adult cancers are not the same.

Unlike adults fighting cancer, kids may not fully understand what’s happening to them while they undergo cancer treatment. They don’t understand why their hair is falling out, or why they can’t go to school with their friends, or why it’s essential that they take medicines that taste bad or make them too sick to play. It's very awful.

I got to learn the importance of human relationships, and I am much obliged for that.

LANVYA GURUMOORTHY (INTERN) - Madras School of Social Work

I was used to being an introvert my entire life. I don't have many friends...I don't chat or talk with anyone often. I don't participate or volunteer in any programs. I love to be alone and that is my favourite thing to do. But after coming to Golden Butterflies I realized what I have been missing for my whole life. Meeting the team of Golden Butterflies created such a good impact on me.

I started to develop my personality in a better way. Working with the Children’s was such a wonderful experience. I couldn't believe that I was able to put a smile on a child's face. And my favourite part is that I volunteered to do research for the golden butterflies. This is something where I came up and volunteered for the first time. I made sure that I had to give my best. I got to work with my classmates which gave me the bestest memories to carry forever in my life.

Golden Butterflies made me inspired, encouraged, grateful and got the best of me. It will always have a special place in my heart and it was my pleasure to get an incredible experience from Golden butterflies.

GANESH KRISNAN (INTERN) - Madras School of Social Work

A 20-year-old boy who has no idea about what Internship is all about but eager to work. While searching for NGO's I got GB's contact through my super senior. First thing I hear about GB is it was a Children’s Palliative care our work will be mainly associated with Cancer Children’s at ICH, Egmore. Without delay, I imagined my crying face while watching Fault in our stars and Igloo film. I was so eager to meet cancer Children’s. Then I started working there with my friends.

What an incredible experience it was!!! GB engaged me in various NGO activities which made me to explore myself and a right food for my inner learning thirst. I learned, I smiled, I cried and I lived there for a month. There is a phrase you will find in GB “It feels good to hear someone say take care. But, it feels so much better to hear when someone says I'll take care of you. GB took care of us all these days, and it is such a pleasure to work there.

DHARANI DHARAN OJ (INTERN) – Madras School of Social Work

Strong support is an essential part of life, especially when you’re facing a serious and life-altering illness. For those living with cancer, HIV/AIDS, heart disease, kidney disease, lung disease, or dementia, Palliative care offers the necessary support.

Palliative care consists of a team of professionals who work to minimize the challenges and discomforts of a serious disease. Unlike hospice care, it can be used at any point in the progression of a disease.

Palliative care may include pain management, curative treatments, massage therapy, spiritual and social counselling, and other medical care.

Those who receive Palliative care have unique needs and stressors. A personalized team can understand and address these needs. In addition, support from friends and family is key during these stages. The following online resources help to inform and support those who are considering Palliative care or going through it, as well as their loved ones.