A Star is born … in Cambodia

If you still remember Ka who has never gave up and touched
by her story.  This might be another story
you have been waiting for.  This story is
going to be long and photos are so many but great until I cannot leave one
out.  So, please find some free time, sit
back, relax and enjoy the story and viewing the photos.   And if you are cannot stand to read the long
story, please feel free to jump to the photos… there are going to tell you the
same words.
Flashback:
October 2007, Pat forwarded me e-mail of a CML patient in
Cambodia said that she celebration on Max’s birthday.   She was asking if I can contact this person
and maybe help him to start a supporting group. 
Both Pat and I wrote e-mail to the person, unfortunately, we have not
heard anything back from her.   I still
kept thinking of this for all the time. 
From time to time, there were some Cambodia help cases come my way, but
still no one seems to be the good candidate on this position. 
March 2012, I first met Ka and advocated her to receive the
second line drug in Thailand.  She was
back and forward Cambodia, and just by chance, I invited her and brother to
join MaxSmiles on monthly meeting.   She
shared her story to the group have got a great emotional support from the
members.  She felt so much better when
she shared her story with the people out side her family, especially with
people with the same kind of cancer – CML.  On that day, I knew that that we need the
supporting group for Cambodia and Ka would be the one who start it.   Ka had a chance to gain experience by
joining MaxSmiles Celebration of Life 2012. 
From the casual talk and rough idea became a serious project working on
the proposal to The Max Foundation – MAX. 
I double check with her many times if she like to do this.  And the answer is ‘yes’, she would like to
have the group.  I offered to support her
to form this group up.  I was thinking of
to visit her family, the hospital and the doctor that she sees for the
treatment was one of my first plans.  However,
I need to wait for her to get her health improve before we can started anything.  
July 2012, Once Ka has got the good news from the physician
that her blood count had become normal.  I
decided to make the road trip with her on the way back to Phnom Penh.  I had got a good chance to meet up with Dr.
Mary Kluck at the Medical Mercy Center – MMC. 
Dr. Mary, as everyone call her, who is a GIPAP physician and always a
big supporter to CML patients and Ka. 
She is always busy with her works at the clinic.  She agreed to have a lunch meeting with me
and Ka at a small food shop on the back the hospital.  It was turned out to memorable meeting when the
rain pouring down with a storm.  At that
time, Dr. Mary did not have really idea how the supporting group would be
benefit to patients.  However, he
accepted to speak in the meeting, and suggest Ka to write to the director of
MMC for a meeting room.  That was a good
start already.
A proper project proposal has been submitted to MAX and she
has got the first grant approved to run the very first CML Supporting Group
Meeting in Cambodia.  The meeting date
had been first set to be in October 2012, during our Celebration of Life month.  She started with asked Dr. Mary to give her
information to the patients who came to the clinic.  Dr. Mary respect with patient privacy and confidential,
so Ka was not allowed to know that patients’ name, and need to wait patient to
call her.  Ka has not received a good
respond, only 2 called her and willing to come.  She was discouraged and not sure if anyone
would come to her meeting.  But that was not
just only challenge she has got.
September 2012, there was not good news from Ka.  Her health has trouble her again after she
has been well for a period of time after she started the second line
medicine.   She coughed a lot and felt so
weak.  She decided that she could not run
the meeting and postponed without date.  
At that time, I did not think she would make it to the meeting again. Ka
spent a month to find what caused her health and she took the courage to take
the second time the bronchoscope that was almost kill her at first time. The
worst case, she might have got a lung cancer that was the doctor concerned.  The lung doctor finally found the cause which
only lung infection by a virus, and started her medicine for treating her lung.  Not so long, her lung doctor told her that
she has got the right medicine and the disease was under control.  Ka was feeling much better again gradually.  The meeting was still in her mind for all the
time, so this time she thought she could do it.
Preparation:
January, 10th 2013, I made a trip to come see Ka in
Cambodia.  MaxSmiles would like supporting
Ka, so thought they would come joined, but since the airplane cost too much and
there were no travel agency to do the road trip tour from Bangkok to Phnom
Penh.  So, MaxSmlies was happy for me to
bring 50 MaxSmiles Stomp Out Cancer T-Shirt, and 50 MaxSmiles clothes bags and
the support from MAX of 100 Maximize Life Wristbands, and the sound system I
have been using for MaxSmiles meeting.  There
were so heavy, thanks to God that I the airline allowed me to get on the plane
and I made it to Phnom Penh.  Ka and his brother,
Pich, were waiting for me at the Phnom Penh Airport.
I arrived a day early to help Ka on her preparation and I
found she has done all arrangement.  Ka
so worried about to be her first time host of the meeting.   A short briefly training her of all skill
that she would need for leading the meeting, such as the public speech, eyes
contact, body language and how to create laughter were trained to her.  Ka said that she had practiced the speech
with her mother but she was not happy. 
In afternoon, she has got many phone calls from the members that were
willing to join her meeting call confirmed her the meeting day.  This time, Ka had more people calling and
willing to come.  The support from the
pharmacist that the medicine room who knows Ka well, to give the invitation to
all the CML patients who came to pick up the medicine.  Ka told me that she had good talk with many
patients and a couple of them so keen to come help her. Ka was thrilled to tell
me that 13 patients with 5 caregivers confirmed to come for the meeting.  She felt much better this time that there
will be more participants.  We discussed
over the schedule and rearrange for the last time to make it smooth and effective.
   Ka told me that we were going to use the
meeting room of MMC, and the meeting room would be used for staffs meeting and
we could not go prepare the room the day before.  She was a bit nervous and worried.  I suggest to drawing a map and flow chart of
the meeting, so then we could manage it right away when we arrived.  Ka’s younger brother, Pich was running back
and forward to get what Ka need for the meeting for all the afternoon.  Pich had never get tired of doing that for her
since he knew this was important to her. 
Ka’s mother offered to contribute the tradition Khmer food for
lunch.  She and her sister prepared the
food the food the day before and will cook on the morning of the meeting day.  Everything was set and ready, and Ka was so
excited.
Meeting day:
January 11th, 2013, we all woke up early, everything were in
the family care.  Ka’s friend, Heng came
meet up, and then went to pick up soya bean milk drinks Ka ordered and then went to
the Hospital.   There is one person who had arrived before we
get there, and was the one who offered Ka to arrange the place. A MMC staff
helped Ka on the arranging the meeting room while Heng was managing the
registration area.  My job was to set up
the meeting room, projector and the sound system.   With a
well plan, we have done all preparations at 9am – one hour before the schedule. 
Ka was at the registration, greeting and welcoming
participants one by one.  It was like a
blind date when they were first talked on the phone and now seeing each other
face.  Holding hands, smiling and
laughing were good warm welcome to everyone. 
Fill up the registration form, sign the Cambodia map and get the
gifts.  Ka walked around to make sure
that she talked to everyone.
Dr. Mary Kluck arrived and amazed by the meeting room set up.  She though it was going to be a small group
of patients.   That was so
impressed.  She and participant get into
the meeting room on the schedule and Ka able to start the meeting as she
planned.
Welcome speech:
The meeting started at 10:40 as we planned.  Ka was welcoming everyone to the meeting by
telling the goal of the meeting and the sessions plan.  She introduced Dr. Mary Kluck for the CML
Education Session.  She asked Dr. Mary to
tell the story that she have never tell patients before of how she become to work
at MMC.  An Australian doctor who become
a volunteer helping poor Cambodia patients at the clinic, and never get tired
at work.  Everyone loved her so much.
CML Education Session:
Dr. Mary speaks Khmer fluently and used the white board to
give the knowledge to the participants.  She
talked about, blood component, What is CML?, Philadelphia Chromosome.  Ka was around to help Dr. Mary for the vocabularies
that she did not know.  A new doctor name
Dr. Pheakdey who is going to treat CML in the clinic came by and interested to
join the session.   Dr. Mary asked him to
give the explanation of what Chromosome mean in Khmer.  
Q&A Session:
Participants stood up one after one asking interesting
questions.   Participants took turn to stand up and asked
questions to Dr. Mary.  I heard from Ka
later that the questions are good and Dr. Mary provided the good answer like;  Can CML man get married?, Why my skill get
pale? Why do I feel weak often?, Is CML is contagious? Can we catching CML by
sharing food?  Why CML lady cannot get
pregnant?  Why I need to taking and the stopping
the medicine – does not like the other? Am I going to resistant to the
medicine?  On the end of this session, Dr.
Mary invited a lady who is always cheerful and active to demonstrate how she does
the exercise.   You know what, she was
the lady that Pat was asking me to contact 5 years ago. She was so cheerful and
happy.  She told me later that her son
who wrote Pat e-mail.  She said that her
son was so busy and has never got time run any meeting.  She was so happy to meet me and that she came join.
 I am also happy that finally I met her.
Everyone feel that CML Education and Q&A session were helpful since they could ask more question than when they come see Dr. Mary at the clinic, also to hear what other feel and experiences. The session went so well and so impressed for everyone and took as the session everyone like the most for this meeting.  
Lunch:
Traditional Khmer home cook food
from Ka’s mother never disappointed anyone. 
The taste and quality of food were great and everyone so enjoy.  Khmer curry went well with the French bread, stir
fired broccoli with shrimp and chicken with ginger. Soya and green bean drink
were so healthy and refreshing.  That was
good example of living healthy life style as our Stomp Out Cancer Campaign.  These also become one of the best memories of
this meeting.
The Music Session:
Ka invited two of her friends who
volunteering to come play guitars and sing songs for the meeting.  They first schedule to come after the school
hours since they are students, but change their mind since Ka convinced them by her mother Khmer food.  The two volunteer musicians changed their
mind since they have experienced the mother home cook food.  They arrived at noon time and set up the and
ready to sing before 1pm.   Once they
started to sing first song, all the participants walk back to the room
including Dr. Mary.   The music were so
great, encouragement songs, love songs and funny rap songs.  Everyone so enjoying listening and laughing, include
Dr. Mary. 
The Max Foundation Presentation:
I was a mystery person at the beginning of the meeting walking around the room.  I prepared a presentation and
asked Ka to be my interpreter in this session.  I asked everyone was not
so surprised that no one knows that who is The Max Foundation, how do they get the
medicine since there is no MaxStation in this country.  I told them about Max and his legacy and his
fought against the CML was inspired everyone. 
I told them about what are doing and our global campaigns. I showed the
logo of supporting group around the world and the last one is MaxSmiles
story.   I told them of our first meeting,
how we chose the name and create the logo, Celebration of Life, Sharing group, and
Art Project.  There were no question and
comment after my session.   I really did
not know what they were thinking.
Sharing Session:
I thought that we would need Ka to
share for the first person to inspire everyone to give sharing.  Surprisingly, the first person hand up and
started to share her story.  And then, from
person to person kept sharing their history and how they have been through to
make it to MMC.  Ka did not have time to
share her story.  She instead was facilitating
the sharing by giving the instruction and then asked questions and thanks the
person.   The sharing went so well and was
about an hour and a half, and there were some still have not yet shared, so Ka
asked them to keep for next meeting.  Again
I heard laughter from the group.   The
sad story in the past memory become a fun story when telling to the group.  Although, I did not understand any single
word, I do believe that it was great conversation when Ka talked and everyone
laughing so much even the little girl. 
The sounds of them laughing were so beautiful.    At that moment, all the loneliness and
miserable have been gone.  Only the
friendship and joyfulness were in the room. 
This became the second favorite of sessions that patients like the most.
Group Discussion and closing
speech:
Ka talked to everyone about the group name, then everyone
gave good idea out of it. Max New Life, Max Hope, Max Help Hope, Max Fighting,
Happiness of Max, Hope of Life.  They were
explaining of the meaning of the name. 
There were no enough time for the vote, so agreed to keep this for next
meeting.  I just feel that my
presentation inspired them a lot.  They
agree that they would like to meet every 3 months since some of them could not
come often, live in countryside or has not much money.   
Ka gave the closing speech by thanking Dr. Mary, MMC, MAX,
volunteers, her friends and family to make this happen.   Ka
said that she become a start when everyone came to hold her hands, thanks her for
the meeting, and asked to take photos with her. 
After the meeting, Ka counting the registration form, said
that we had 16 patients, 12 caregivers and 7 volunteers and 2 doctors.  That become 37 total!  This is the biggest starting patient
supporting group for me.  Of course for
Ka, this is successful since it was original initial by a patient herself, in
the hospital and 2 physicians joined in.  The meeting went so smoothly from the start
till the end, and Ka has never stopped talking to everyone, with her great
smiles.  I am so proud of her.  
Ka could not stop smiling and laughing.  Here what I hear from Ka after the meeting.
“Wow, it is unbelievable that I can made the meeting
happened.  I am so proud of myself.  I did not expect I can do it.  It was amazing for me.  I am so happy to see all the group members
got the support.  They are happy and
enjoy my meeting.  Even I am not good the
management and speaker, but I still happy that I make it to the end.  People keep cheering me up.  I have been working very hard for many
months.  All the hard works have been
paid off today when I see the patients feel happy and thankful for everything I
set up for the meeting.”
“When I started it, there were only 2 people confirmed, and
I feel discouraged.  I got good support
from the pharmacist who gave the invitation to the patients who was picking up
the medicine.  I finally have 13 patients
and 5 caregivers confirmed, all came but 2 could not made it, but we got 2 more
since they happened  to come to the
clinic on the day.  I have got 17 CML in
my meeting!  I could not believe that I
done it.”
“I was happy that I convinced one lady who was about changing
her mind not to come to join the meeting since she had nothing to give to the
group.  Finally, the lady made her mind
to come and then she was in tear that she was happy that she came and met
others.”
“The little girl came to me quietly, speak softly and slowly
“Sister,… today I got the T-Shirt, … but my father could not come. …  ummm … Can I get one … for my father?”  She was so lovely saying that and I felt so
touched.  I gave the little girl one more
set of the gift. ”
“At the clinic day, when I saw other CML patients, but we
never talked.  But in the meeting, it
difference.  We keep talking and talking
and talking.  I have got more new
friends.  I hear more stories from the
others, I feel so emotional.”
“There is a man who offered to come early and help me to
organize things for the meeting.  He is
so good and kind.  He said that, next
time if we meet again, he is going to bring a big pot of rice to share
together.  I like when he said “We are
now family. We should help each other.” ”
Participants comments:
“Madam, Thank you so much for making this meeting happened
for us.  I am really appreciated.   Thanks for keep calling me to join this
meeting.”
“I am so happy to join this meeting”
“I was feeling alone. 
But I join the meeting, I see everyone who have got the same
disease.  I feel not alone.  I feel like everyone are my family.”
“I had got hard time when I heard that my daughter has got
CML.  But feel better when I join your
meeting.  You cheer me up and keep me
strong and continue fighting”
“I have got CML.  I
felt weak.  But, when I see you, you look
so confident, speak so lively and very active. 
I could not believe that you have got the CML as mine. You surprised and
inspired me.“
“I like the Sharing Session and then Patient Education and
you when are talking.”
“I thought it was only me when I have got CML.  When I come to see everyone, I am so happy
and make me feel like to come to the group again.  Food were so delicious, I would like to eat
more. ”
One quiet patient who her neighbor encourage her to come to
the meeting. “I was so enjoy the meeting by laughing so much”
Here are the text message Ka received from participants on
her phone after the meeting:
“Thank you Ka for holding the meeting today.  I am so happy to meet you.  I would like to volunteer to work with you as
a teamwork.  Can you please, how can get
the connection with The Max Foundation, and Mr. Wirat?  I hope to meet you again when I come to Phnom
Penh.”
“Hi Ka, I am of a member of CML group today.  I am very happy to meet you and all members
in CML Group.  I hope that next time I
can do something for our group that if possible.  Goodnight. 
We are lonely and happy to know you – friends.  From me Teacher…”
One patient could not make it to the meeting but sent
message. “It was nice to talk with you. We can meet every weekend.  Have a nice day.”
Ka hardly stopped talking and smiling.  She kept talking and talking about her
meeting in the car until the night time. 
She is planning to have the next meeting in next 3 months.  At least she has got the teamwork that
willing to help her to organize the meeting. 
She has got one Teacher who speaks English well, and willing to help the
group.  I hope that he will be the
co-leader to share Ka works.   I told Ka
that she was my best supporting group founder ever.  I wish to have a person like her to start
MaxSmiles.  Ka said to me before I got on the plane “I feel that I growing so much, become an adult and feel more confident.  I am so happy that I am support other CML patients and they would never feel alone anymore.”
I know why I love this job so much.  It is all about unlimited advocacy to cancer
patients and caregivers.  The more you
put in the more people would get support, not only from the medicine, but from
the encouragement they spread to others and others, like dominoes fall down.  The more I put on my works are the more people
that we reach out.   I am so happy to be part of this history that
the Cambodia CML Supporting Group has been established.   In this
group history, I was a light and sound and system, photographer, and even the
microphone holder.  It was great that
everyone around Ka get involved, her family, her friends, doctors, nurses.  This is not only happened easily
overnight.  It comes from Ka’s heart and
spirit that she has never gave up.
After the meeting, I kept humming the song from a video
clips that I recently watched on the YouTube and become my favorite video that
I kept watching it. [ http://www.youtube.com/watch?v=uRmTo44Sve0 ] I was like the judge
that looking for someone who has the character of the leader of the supporting
group.  I am happy that I found Ka and to witness the first remarkable meeting that would written in CML Cambodia History that she is the founder of the CML Support Group.  Ka has all the abilities that one supporting
group leader could have, and shine so bright.  I feel like she is a start who just born for
CML patients … in Cambodia.
I asked Ka for the permission to share her Facebook account on this post, so anyone would like to give her support are more welcome to add her as friend or simply send her personal messages at ka4everlovely@yahoo.com
Thanks so much for reading.

Post Script:  All
photos and story have been consent by all participants for publishing on MAX website and
newsletter.  

A memorable lunch meeting with Ka and Dr. Mary in July 2012

Ka’s mother and her sister and niece were preparing food at home.

Ka so happy that everyone call to confirmed to come.

Signing the Cambodia map, where he lives.

With the patient who has just started medicine for one month.

Gifts from MaxSmiles.

She does not know how to write, so Ka fill up for her.

Everyone is so touched by the support from Dr. Mary.
This neighbor encouraged the patient to come join this meeting.

Dr.
Pheakdey is explaining the transmission of Philadelphia Chromosome in
Khmer.

The lady who is always cheerful and strong demonstrate her daily exercise. 

They look like friends rather than doctor and patient.

Ka’s mother prepare the food and make sure everything is in place.

Khmer Curry from Ka’s mother is so tasty especially with the French bread.

The lady live so happily and cheerfully. 

Max give me hope and hope keep me live.

Ka speak non stop and with sense of humor. 
Ka made them laughing so much. 

My new friend, teach who can speak English, and willing to support other CML.
The guy who so proactive and enthusiastic. 

Me, Pich, Ka and Heng, We are good teamwork.

Cambodia CML Supporting Group is born. 

Leave a Reply

Your email address will not be published. Required fields are marked *