Samiri's Courage of Life

Samiri's Funeral

2006-03-25T09:30:00.000+07:00

Batam, Saturday, 11 March 2006

About 09.30 am
It was a clear day, the sun shone at its brightest. The crowd started to gather at the funeral parlour for attending the funeral ritual for Samiri. Tears shed, but in our heart, our greatest admire to her kindness and courage was placed in a very special corner. Her kindness and courage has never died in each of our hearts.

Samiri's Family at the Funeral Parlour before the departure to the crematorium site

About 11.30 am
The arrival at the crematorium site had never been so hard to us, we were there to give our very last respect to our very dearest friend. There was nothing much that we could say at that time. Below are pictures taken a moment before the ritual started.

The Committee's For Fund Raising For Samiri (Romi, Lynna, Suryani, Saufa, Gimun, Saman)

Samiri's Friend from Goodway Hotel

Samiri's Friend from International University of Batam

Samiri's Friend from the Temple

Samiri was cremated around 1.00 pm.

In the name of Samiri's Family, we would like to thank to all friend, colleagues and all parties who has given support until Samiri's Last Day.

May all beings live in happiness and May gods and all holy creatures bless every single sould in this world.

Good Bye Samiri

2006-03-10T16:07:00.000+07:00

It was the fourth week after Samiri had her chemotheraphy, we still had no idea what's going on with her body. She was fine, but at sudden her condition dropped. It was the week when the doctor inform us that her leukosit increased.

It was the fifth week after Samiri had her chemotheraphy, the doctor tested her stem cell and found "blast" which later on were traced from her liver. It meant her lever was infected already with the cancer cell.

Since then, Samiri's Condition dropped tremendously. The doctor had given up on the treatment, they dare not to proceed the second chemotheraphy. Only small dosage of treatment and light chemotheraphy were given to improve her condition, but her body did not give any reaction at all.

The condition of her liver was getting worse. But Samiri was still showing her strong will to fight against the illness. She never gave up. She got the information that there was a drug which was under test, she urged to take the drug for the next four days.

Her body gave no reaction to this drug.

.... .... .... ....

Her last wish was return to Batam. Samiri said that she had tried all type of treatment up to her satisfaction.

----
To Batam Hospital
Re: Samiri
DOB : 21 April 2006

This young lady above is a patient of mine who suffers from Chronic Myeloid Leukaemia in blast crisis. Despite all forms of intensive treatment, her leukaemia has remained resistant.

She is currently very unwell and the family and he know there is no hope for recovery. They understand that we are providing terminal palliative care. She is currently requiring dopamine support and oxugen therapy to maintain her blood pressure and saturation.

The logical option would be to continue terminal care here in Singapore General Hospital. However, the patient has indicated to me that her last wish would be to return to Batam where her family and village are.

I feel that this brave and wonderful young lady should have her last wishes respected. I understand the family will be in touch with you abot making arrangements for sending her back to Batam. I also understand they or the Batam Hospital will be speaking for the ferry company concerned for her transport back.

She will require the assistance of either a nurse, or preferably a doctor with her. She will need a stretcher as well as pumps fur fluid sand dopamine support. She will also require oxygen throughout.

The reason I have asked for a doctor is that should he blodd pressure fall during the ferry journey, a doctor may be needed to increase the fluid administration or dopamine support.

When she does arrive at Batam, all that is needed is palliative care, largely symptomatic relief and oxygen therapy as well as maintenance of blood pressure with inotropics.

This is indeed a sad occasion and I am trying my best to fulfil her last wishes.

Thank you.

Regards,
Dr.Mickey Koh
8 March 2006

----

Samiri arrived at Batam in the evening time and was stationed in ICU of Awalbros Hospital.

9 March 2006, 3.20 pm. Samiri ended up her pain, she passed away but her courage still clearly seen on her face.

Goodbye Samiri, we know that you have already fight up to your limit. We will never forgotten your courage, spirit, smile, cries,...

We will be missing you...

May god and other holy spirits pour their blesses to all mankind, may every single individual living being in this world feels your courage and spirit to inspire them.

Samiri.... we love you.....

Last Update Feb 10th, 2006

2006-02-10T08:25:00.000+07:00

Update on 08:30 GMT +08:00

Yesterday, Samiri got an small surgery to take some sample from her lever, her blood count have a better position since two days ago, her Red blood cell and White blood cell have near to normal but her platelet still low, that's why before make the surgery for lever sample, the doctor give her platelet transfusion.

We hope the lever Lab result will be ok, and Samiri can continue her second chemotherapy soon, before make the bone marrow transplant.

In this change,
Samiri from Singapore General Hospiatal & All the Committee Board
would like to wish all of the peopple who care Samari & all of the donator,
GONG XI FA CAI & have a happy and prosperous lunar new year

Update Feb 06th, 2006

2006-02-06T15:30:00.000+07:00

Update on 15:36 GMT +08:00

Today is the 24th days since Samiri got her first chemotherapy, all her blood count have improvement, her blood count slowly increasing and her hi fever has gone.
But the doctor said in her liver found something unnormal, they have to check her liver if her blood count already up to the normal stage.

Samiri have loss her weight, since the chemotherapy begin three weeks ago. We can not take her picture, because of the doctor advice to not directly point to her any radiation things that can effect her and have to keep clean if would like to near her.

I have a massage from Samiri, she would like to say thanks to all the people that care for her especially to the committee team, Harian Tribun Batam, all her friends that have done so much for her, she will keeps her condition to be strong.

Last Update Jan 24th, 2006

2006-01-24T08:32:00.000+07:00

Update on 08:30 GMT +08:00

Today Samiri look better, in spite of her fever still up and down frequently, but she still have the courage for fighting with the Leukemia. Her condition still in monitor by the team doctor in Singapore General Hospital.
From yesterday, the doctor have decide to not allowed visitor to see Samiri, because of her chemotherapy reaction already working maximum, to avoid she got infection that can threaten her life.

Update on 15:05 GMT +08:00

We just receive information from Dr.Goh in Singapore General Hospital. He said today is the 10th days, since Samiri got chemotherapy and this few days is the critical period for Samiri, because her White blood Cell (WBC) keep falling down, usually the WBC will be going up again just after 14 days and the hospital already prepared all the emergency needed for Samiri, so in this few days the family must have preparation for the worst.

May god will bless my dearest sister....

Last Update Jan 20th, 2006

2006-01-20T15:36:00.000+07:00

Update on 15:30 GMT +08:00

Today Samiri's condition still in continuing chemotherapy reaction. All her blood count are keep down, the doctor instruct the nurse to pay more attention on Samiri, Samiri not allowed to walking or do other activities, her fever still very high, we hope her fever will be down soon.

In batam, the Harian Tribun Batam News Paper have make a report about Samiri's condition, and they have open a donation bank account together with this committee to help Samiri in fund raising, their report will be continue everyday to bring the early news about Samiri to public. for more information please visit "http://www.tribun-batam.com/index.php?module=detail&noberita=6913"

Below is the join account by Tribun Batam and Board of Committee for Samiri :

Rekening Bank Mandiri untuk Samiri
a/n : Atik lestari/Romi
No Rekening : 109-00-0525636-7
KC Batam Imam Bonjol

Last Update Jan 19th, 2006

2006-01-19T09:39:00.000+07:00

Update on 09:45 GMT +08:00

Today is the 6th days, after Samiri start the chemotherapy. from yesterday the chemo reaction begin with no appetite, her blood count begin to drop and it's normally happen, she got blood transfusion from yesterday and today. because of the blood count drop, she got a little bit infection at her colon and high fever, and the doctor immediately take action by give her some medicine.
We can see her courage to fight againt the Leukemia, we believe Samiri can do it.

Last Update Jan 14th, 2006

2006-01-14T11:59:00.000+07:00

Update on 12:00 GMT +08:00

This morning Samiri's condition look very well, and her doctor begin all preparation of the chemotherapy, all the scheduling checkup start at 09:00, from blood count check up until heart checkup and at 11:00 the chemo drug begin by transfusion.

Her doctor prediction that Samiri have to take 2x chemotherapy before the stem cell transplant. and this 2x chemo is a very hard time for her, we hope that Samiri will go through all of this.

Last Update Jan 13th,2006

2006-01-13T16:08:00.000+07:00

Updated on 16:00 GMT +08:00

Today, Dr. Mickey Koh have decide to continue Samiri's Bone Marrow Transplant procedure after a series of investigation on Samiri's condition for her safety by do the bone marrow biopsy(bmb) this morning, and they will put a tube on her upper chess for her chemotherapy, if everything going well, she will be take her first chemotherapy tonight or the latess on tomorrow morning.

We pray for her, and hopes the procedure for Samiri's opportunity in curing her Leukemia will have no any problem.
We will be updated her condition after the chemotherapy begin.

Last Update Jan 03rd, 2006

2006-01-03T08:35:00.000+07:00

Update on 08:00 GMT +08:00

Happy New Year 2006....

Today Samiri in good condition, the checkup and scoop result already came out.
In her blood found some bacteria and in her colon found some infection and the doctor have some conclusion that this must be the cause of her fever sometimes, and Samiri have to wait another weeks for curing her colon infection first before do the chemotherapy.
Few days ago, a batam local newspaper "tribun batam" have make an interview with Samiri at Singapore General hospital, to know more about Samiri and her courage in fighting with Leukemia, you can find the complete news at following link by clicking at this link "Tribun Batam : Samiri"

below is Samiri's photo taken with the Tribun-Batam Staff, Tari.

Last Update Dec 29th,2005

2005-12-29T08:56:00.000+07:00

Update on 09:00 GMT +08:00

Yesterday, The committee member, Romi & Saman Tan go to hospital to visit Samiri. She looks very well, we talk a lot with her, and from the doctor information today Samiri will be fasting all day, and tommorow will do the Stomatch Scoop. Here is her photo that we take yesterday.

Last Update Dec 27th,2005

2005-12-27T12:01:00.000+07:00

Update on 11:50 GMT +08:00

Today Samiri already meet Dr.Mickey Koh at Singapore General Hospital, and she will stay at hospital for preparing Complete body check up and plus special Stomatch Scoop to make sure everything is ok, if the result come out later with no any problem, Samiri will be continue to make chemothrapy.

Dr. Mickey Decide to give Samiri one more chemothrapy and the cost is excluded from Stemm cell transplant package. The doctor hope to give Samiri more probability of cure her Leukemia.

I will update her information soon after the checkup result come out.

Last Update Dec 23th, 2005

2005-12-23T08:56:00.000+07:00

Update on 09:00 GMT +08:00

Yesterday, Dr Mickey Koh already make a check up to Samiri, Because of Samiri got some infection last week, so before starting stem cell transplant she have to pass a series of procedure. From the schedule of next tuesday Dec 27th, 2005, Samiri have to take a complete check up for her safety, to make sure there is no any virus or infection in her body, if the checkup result no any problem, she will continue to take chemotherapy then after the chemotherapy is done the stem cell transplant will be make for her.

Last Update Dec 21th, 2005

2005-12-21T14:30:00.000+07:00

Update on 14:30 GMT +08:00

Today, Samiri still in good condition and this morning she already go to Singpore General Hospital for controll, and have to controll again this afternoon. We hope tomorrow Dr.Mickey Koh will decide her Bone Marrow Transplant schedule.

Last Update Dec 20th, 2005

2005-12-20T13:27:00.000+07:00

Updated on 12:00 GMT +08:00

This morning Samiri go to Singapore General Hospital again for control, the doctor give her antibiotic transfusion and Blood transfusion again at 8 o'clock then she have to come back to hospital at 16:00 afternoon for antibiotic transfussion again.

Today, Samiri still in good condition, even her blood counts (Red Blood Cell) a little bit drop.

Last Update Dec 19th, 2005

2005-12-19T08:40:00.000+07:00

update on 08:00 GMT +08:00

This morning, Samiri's condition is very good, her lung scan result already come out, everything is in normal range, no any bactery or virus in the Lung. The doctor already come and check up, Samiri can go home by today and come back to hospital for check up with doctor Mickey Koh (her Stem Cell Transplant Doctor) on next Thursday, Dec 22th, 2005.

update on 21:00 GMT +08:00

Samiri have been back to her sister's home at singapore at 16:00 afternoon, but she have controlled to Singapore General Hospital everyday until next thursday, dec 22th, 2005.

Last Update Dec 18th, 2005

2005-12-18T11:14:00.000+07:00

updated on 10:00 GMT +-8:00

Yesterday Samiri still got high fever in the morning for a short time, around half an hour.
The doctor said, we hope to know the Lung Scan result soon, so we can give the right medicine that cause of her fever.
Samiri, look more better today.

update on 21:00 GMT +08:00

Today, Samiri in good condition, her fever in stable. we already contact her doctor, and the doctor said if after tommorow morning Samiri did not got fever, maybe she can back to home and waiting for Dr.Mickey Koh come back at thursday, Dec 22th, 2005 for check up and decide her bone marrow transplant schedule.

Last Update Dec 16th, 2005

2005-12-16T08:19:00.000+07:00

Update on 08:00 GMT +08:00

Today, Samiri's condition still in normal range, the doctor planning to check her Lung today as the planning.

Update on 20:15 GMT +08:00

The doctor already make the Lung Check up this afternoon by put a pipe and camera into her Lung, and take some fluid sample and make direct scan from inside her Lung. The result will be come out by tomorrow or next monday.
Samiri's blood count seems a little bit drop again, her platelet only 16k, the doctor suggest to give her platelet transfusion later.

Last Update Dec 15th,2005

2005-12-15T08:47:00.000+07:00

Update on 08:00 GMT +08:00

The Lung Scan result already came out with some infection at the lung with some water.
last midnight her fever reach 38.9 a little bit high. this morning her condition is ok, look very fresh.

Update on 23:00 GMT +08:00

The doctor decide to put a pipe into her Lung, to take some fluid inside and to monitor her Lung,
this have a little bit risk but they should do it, according to the doctor, the Lung should be the cause of her fever up and down frequently. we pray for her, and hopefully she will be allright.

Last Update Dec 14th,2005

2005-12-14T08:51:00.000+07:00

Update on 08:00 GMT +08:00

From 01:00, Samiri feel cool and unable to sleep well, her back and feet bone feel pain.
The hospital will do "Lung Scan" today. Until now we have no any clearly explanation from the hospital, what exactly happen to Samiri. Until now they have sent a few of Infection Specialist to interview Samiri, but they did not mention what exactly happen.

We have try to ask the hospital, is it possible Samiri got infection because of the BMS-354825 trial drug! but they dare not to answer, they just said this is something like a big case the team of doctor still in the meeting. We hope the hospital will honestly tell us the result soon!

Update on 11:00 GMT +08:00

Committee member "Saman Tan" will talk to the doctor regarding Samiri's condition by today, we hope will got the answer from the doctor/hospital soon.

Update on 22:00 GMT +08:00

at 03:00 pm we reach Singapore General Hospital, from our conversation with Samiri, she look like more confident to fight again Leukemia, and she is look fresh she can walk by herself and all the infussion already take off, but on her right hand still have two pipe.

at 04:00 pm, the doctor incharge "Dr. Goh Kiat Sern" come and talking to us, we asking several of question regarding Samiri's condition that until now have no any clearly explanation, then Dr.Goh, give us some summary answer, from him we know that Samiri involve in some complicated infection, that is why Samiri fever still up and down, but the black and white report he did not give us.
below is the latest picture of Samiri that we take :

Last Update Dec 13th,2005

2005-12-13T08:40:00.000+07:00

Updated on 08:00 GMT +08:00

Since last night Samiri can sleep normal, but her temperature still up and down.
Her CT-Scan result already came out, everything is ok, no any problem.

Updated on 13:00 GMT +08:00

The Hospital today show us the bill until now is $S 9.850,- and they will do the heart scan again!
Samiri's got high fever 39.3 again. It's very confusing, because until now, with current amount of bill, the doctor still don't know, what is the problem with Samiri.
We just can pray for her and hope her high fever will gone and do the Stem Cell Transplant soon.

Last Update Dec 12th, 2005

2005-12-12T18:59:00.000+07:00

Updated on 08:00 GMT +08:00

Last night at 22:00 pm, Samiri got high fever and cold again and from her blood test result, describe that her blood not enaugh some calcium that needed then the doctor give her some antibiotic injection and the calcium that she need.

Updated on 12:00 GMT +08:00 at

11:00 am the speciallist infection doctor have make a checkup to Samiri, The doctor will do the CT-Scan for her later.

Last Update Dec 11th, 2005

2005-12-11T11:48:00.000+07:00

This morning her condition a little bit higher, her blood count seem better after the doctor stop the trial drug (BMS-354825), her platelet have up from 17k to 63k, RGB from 7.5k to 8.6k and WBC stil in 2.55k

Her picture taken on dec 10th, 2005 morning.

Last Update Dec 10th, 2005

2005-12-10T09:23:00.000+07:00

Updated at 08:00 GMT +08:00

Samiri high fever last night already back to normal. but still in intensive monitor.

Last Update Dec 09th, 2005

2005-12-10T08:53:00.000+07:00

Updated at 08.00 GMT +08:00

Today, Samiri's condition have improvement.
Doctor will do check up for her lung and heart.

Updated at 20.00 GMT +08:00

Samiri got high fever again, the doctor give her some antibiotic injection.

Last Update Dec 08th, 2005

2005-12-08T13:05:00.000+07:00

Update Dec 08th, 2005 at 12.00 noon GMT +08.00

Today Samiri's condition still under intensive care by doctor at Singapore General Hospital.

For Samiri's Bone Marrow/ Stem cell Transplantation Procedure, we already nagotiate with the Hospital. An agreement have been sign, for samiri's stem cell transplatation. In the agreement they descript that hospital already agree to let Samiri make the transplantation once the in charge doctor (Dr.Mickey Koh) decide, and deposit for amount S$ 40.000 should be paid before the transplatation. From our committee fund raising are able to got S$ 25.000 and will be paid as soon as possible, and the rest deposit of S$ 15.000 will paid from samiri's inssurance coverage around S$.15.000. The hospital already agree to let us process Samiri's Inssurance coverage first, once we got the cash from Inssurance, will be paid to the hospital.

The Doctor in charge (Dr.Mickey Koh) have been contacted, he said, we will wait for samiri's condition be more healthy and he will monitor her condition continuously. Once Samiri's Condition is better, he will do the Stem cell transplatation for Samiri immediately.

Samiri's Condition on Dec 07,2005

2005-12-08T08:35:00.000+07:00

On Wednesday, Dec 07th, 2005.

Samiri's condition begin drop, and the family immediately send her to Singapore General Hospital for intensive care.

From Doctor diagnose, Samiri seems involve some infection in her stomach and her blood counts also drop to a very low level.

The Doctor immediately make a transfution of Platelet for Samiri.
and currently in intensive monitor by the doctor.

Charity Board Committee

2005-12-07T09:06:00.000+07:00

Advisor Board : Ven. Nyana Karuno, Saufa J Tan

Head of the Committee : Steven Japari
Secratary : Hui Cu
Treasurer : Romi, Lynna,
Public Relation : Gimun Sulaiman, Saman Tan,Suryani

In coordination with:

- Panguyuban Sosial Marga Tionghua Indonesia(PSMTI) Batam
- Umat Buddhayana

Committee Account Number :
- Indonesia
o Bank Central Asia, Batam Island, Jodoh Branch
Account No. : 0611699530
Name : Steven Japari
Please email to gimun.sulaiman@gmail.com or sms to +628127001259 once you have transferred your fund

- Singapore
o DBS Savings
Account No. : 032-5-022584
Name : Luis Tirtasanjaya
Please email to ltlioe@nie.edu.sg cc to psmti-humanity-owner@yahoogroups.com or sms to +6596673150 once you have transfered your fund

- Australia
o Commonwealth Bank, University of New South Wales Branch
Account No. : 06 2303 10412178
Name : Mariati Mariati
Please email to maria_teo@yahoo.com cc to psmti-humanity-owner@yahoogroups.com or sms to +612413823150

This Committee Bank Account will be signed by three person except for account in Singapore and Australia.

The cheque will only be valid if two from the three persons signed. Signatories are

Steven Japari, Ven.Nyanya Karuno and Mr.Saufa (Public Relation from PSMTI, involved as personal not as representative).

For more information, can be contacted :
Panguyuban Sosial Marga Tionghua Indonesia (PSMTI) BATAM
Tel : 0778 424066,424798
email : psmti-humanity-owner@yahoogroups.com

Budhayana Tel : 0778-452636

Saufa J Tan Tel : 0811700568 email : telesindo_persada@yahoo.com.sg
Romi Tel : 0812-7781299
Gimun Sulaiman Tel : 0812-7001259 email : gimun.sulaiman@gmail.com
Suryani Tel : 08127000397
Hui Cu Tel : 0812-7019823
Saman Tan Tel : 0812-7000932 email : tan.saman@gmail.com
Lynna Tel : 0811-772807 email : sdnlynna@yahoo.com
Luis Tirtasanjaya (Singapore) Tel : +6596673150
Mariati Teo (Australia) Tel : +612413823150
Suriyanti (Jakarta) Tel : 0815-8780396

For Your information regarding our previous humanity activity are :
• Fund raising for Bodhi Virya http://bodhivirya.blogspot.com

Letter From Dr.Mickey Koh (SGH)

2005-12-06T16:37:00.000+07:00

From: Mickey KOH [mailto:Mickey_KOH@hsa.gov.sg]
Sent: Thursday, December 01, 2005 12:56 AM
To: saman tanCc: ghekbc@sgh.com.sg; telesindo_persada@yahoo.com.sgSubject:
Re: letter of samiri's medical cost!

I have tried so far to obtain funding for Samiri but unfortunately, there are no organisations in Singapore available to suuport non citizens.

The letter below:

Samiri Tan is a patient of mine who suffers from chronic myeloid leukaemia (CML) which has recently evolved into an acute leukaemia phase. She has had CML disease for a few years now. This was initially well controlled on medication including Gleevec but her disease is now resistant to all medication. Her only chance of cure at the moment is a stem cell transplant from her sister. Fortunately, we have found a sister who is matched with her and therefore suitable to be a donor. Unfortunately, the cost of the transplant procedure is high as expensive chemotherapy and other drugs are required for the procedure to be successful. I estimate the cost of the transplant to be around S$150,000.00.

The family of Samiri have been trying very hard to find the neccesary funds for this patient. Samiri is a bright and intelligent young woman and this stem cell transplant would potentially be the only life saving procedure for her. Without it, her disease will continue to evolve into life threatening acute leukaemia.

Regards

Dr Mickey Koh Boon Chai
MBBS, MRCP(UK), MRCPAth(UK), PhD(London)
Consultant Haematologist, Singapore General Hospital
Deputy Director, CTM

Samiri's Leukemia History

2005-12-06T15:46:00.000+07:00

I am Samiri, 24 Years old. My friends are called me Sammi.
On July 9th, 2003, I was diagnosed Chronic Myeloid Leukemia (CML) at Mount Elisabeth Hospital, Singapore by Dr. Ting Wen Chang. As the advices from Dr.Ting, for curing my CML the doctor give me 3 (three) alternative choices, there are :

· Stem cell transplantation with the possibility of success till
80 % - life threatening if fail 20%, and the cost around
SGD 100.000.-
· Interferon alfa, with the possibility of success till 20%.
· Gleevec, the anti cancer new drug, but how long have to
consume this drug, we still don’t know and the cost
around SGD 40.- / each per 100gram.

With the consideration of our family ability that unable to effort my stem cell transplantation and also have risk for transplantation, we decide to consume gleevec. For gleevec I have to consume 300 to 400 gram dosage per-day, and the monthly cost is around SGD. 4500.- it is also a big amount for long term period.
Fortunately, After consume gleevec for one month, we found “The Max Foundation” and have a program named “Gleevec International Patient Assistant (GIPAP)” and Indonesia is one of the country that receive their help for free gleevec consume for CML-Patient that have financial problem.

With the recommendation from Prof. Ary Reksodiputro (Cipto Mangunkusumo Hospital – Jakarta) on Sept 2003, we got approval from GIPAP with 300gram per-day dosage.
I just have to pay doctor consultation fee SGD 15.- and Yayasan Kanker Indonesia – YKI (Indonesia Cancer Assosiation) administration fee around SGD 20.-, each time of my visit. But I have to travel monthly from Batam to Jakarta, to receive gleevec. Until June 2005, there is a new regulation from Cipto Mangunkusumo Hospita, Indonesia Cancer Assosiation and Novartis Indonesia( the Gleevec Manufacture Company) that I have to take gleevec prescription twice a month.

Beside to Jakarta, I also frequently consultation with Prof.Dr.Patrick Tan at the beginning at Singapore General Hospital, then he move to Mount Elisabeth Hospital.

In spite of I got Leukemia, but I still have a normal live, I can work and study at night normally with gleevec. Until May 2005, my health begin drop and unable go to work any more but In june 2005 I still can graduate from Univesity International of Batam with Bachelor degree in Economic.
In the first Year I consume Gleevec, my condition still can be controlled, but in the second year my condition seems begin to drop with my Platelat and Red Blood Cell keep decrease. My bone marrow biopsy on july 7th,2005 seems to be worst, from chronic phase have become Accelerated Phase and near to acute phase. Until August 2005 I frequently got fever and bone pain at both of my legs, on Sept 6th, 2005 I go for consultation with Prof. Patrick Tan again, from his diagnose my condition seems have been resistant to gleevec, and Prof. Patrick Tan recommend to take stem cell transplantation again.

At that time, GIPAP recommend to try another new drug(BMS-354825) special for CML-Patient that resistant to Gleevec, and from recommendation of Prof.Patrick Tan, I go to Dr.Mickey Koh (Singapore General Hospital) for understanding this new drug. From Dr. Mickey Koh we know that this new drug still in trial phase and in asia pacific the trial location only at Singapore General Hospital. After Dr.Mickey Koh make evaluation, he decide I can take part of this trial, but he once again advice me to make stem cell transplantation. I start my first dosage of BMS-354825 on Sept 15th,2005 beside take BMS my family also try to locate any suitable stem cell for me, for my last change to cure CML if this drug fail again.

After 6 week take BMS-354825 my blood count seems in critical level, I event have to make blood transfusion and platelet transfusion every week. And my bone marrow biopsy after 6 weeks in BMS still have no improvement. Once again Dr.Mickey Koh advice me to make stem cell transplantation but from my current condition, the success possibility is decrease to 60%.

My family meant to let me do the stem cell transplantation, and fortunately we found a suitable donor for me. But the cost to do stem cell transplantation in around SGD 150.000.-. event we sell out our house, we only could found less than 50% of the total amount that we need.

For this my family and me, hopes that we could raise the fund for my stem cell transplantation.

Only hopes and courage that I have, to fight with my Leukemia.

Samiri & Family

Saya Samiri, umur 24 tahun. Teman-teman memanggil ku Sammi.
Pada tanggal 9 Juli 2003, saya terdiagnosa penyakit Chronic Myeloid Leukemia (CML) oleh Dr.Ting Wen Chang di rumah sakit Mount Elisabeth, Singapore. Sebagai pengobatan penyakit ini, dokter memberikan tiga altenatif, yakni:
1. Transplantasi sumsum tulang, dengan tingkat
penyembuhan 80%, biaya sekitar
+SGD100.000
2. Inteferon alfa, dengan tingkat penyembuhan
hanya 20%.
3. Obat Gleevec, merupakan obat baru bagi pasien CML, biaya per butir obat +Rp.200.000.-
akan tetapi mesti mengkonsumsi berapa lama masih belum tahu.

Karena keadaan ekonomi keluarga tidak mampu membiayai biaya untuk transplantasi dan juga karena besarnya resiko trnasplantasi ini. Maka kami memilih mengkonsumsi obat gleevec. Dan tentu karena setiap hari mesti mengkonsumsi 3-4 butir obat, dan per bulan biaya diperkirakan sekitar +Rp 25.000.000,- untuk jangka waktu panjang keluarga juga tidak mampu membiayai. Besar sekali karunia yang saya rasakan karena mulai tahun 2003, Gleevec International Patient Assistant Program (GIPAP) telah masuk ke Indonesia. GIPAP memberikan bantuan obat Gleevec secara gratis kepada rakyat Indonesia yang tidak mampu.
Oleh karena itu, atas rekomendasi Prof. Ary Harryanto Reksodiputro di Rumah Sakit Cipto Mangunkusumo Jakarta, pada September 2003 saya mendapatkan bantuan ini. Saya hanya perlu membayar biaya konsultasi Rp.80.000,- dokter dan biaya adminstrasi obat sebesar Rp 200.000,- di Yayasan Kanker Indonesia DKI Jakarta. Akan tetapi setiap bulan saya harus terbang ke Jakarta untuk obat ini. Dan sampai dengan Juni 2005, ada perubahan kebijaksanaan dari rumah sakit, Yayasan Kanker Indonesia dan PT. Novartis Indonesia (perusahaan yang memproduksi Gleevec), maka saya harus memgambil obat setiap dua minggu di Jakarta.

Selain di Jakarta, saya juga masih tetap menjalankan pemeriksaan di Singapura dengan Dr. Patrick Tan di Rumah Sakit Mount Elizabeth (awalnya beliau di Singapore General Hospital, kemudian Juni 2004 pindah ke Mount Elizabeth)

Meskipun terkena penyakit Leukemia, saya masih hidup seperti orang normal, masih bisa bekerja sambil kuliah dengan obat gleevec. Sampai Mai 2005, kondisi tubuh saya mulai menurun dan tidak bisa bekerja lagi tetapi saya masih bisa menyelesaikan kuliah saya dan lulus diwisuda pada juni 2005 dengan gelar sarjana ekonomi.

Pada tahun pertama mengkonsumsi obat gleevec, kondisi badan saya masih terkontrol, tetapi memasuki tahun kedua kondisi badan saya sudah mulai turun, sel trombosit dan sel darah merah saya mulai turun drastis. Pengecekkan sum-sum tulang pada tanggal 7 juli 2005 menunjukkan keadaan yang makin parah, dari awalnya pada tahap chronic menjadi tahap accelerated dan mendekati tahap acute.

Sampai pada bulan agustus 2005 saya sering mengalami panas demam dan rasa sakit pada tulang-tulang kaki. Pada tanggal 6 September 2005 saya kembali berkonsultasi dengan Prof.Patrick Tan, dari hasil diagnosa menyatakan kondisi tubuh saya kemungkinan besar sudah resisten terhadap obat Gleevec, dan Prof.Patrick kembali menyarankan untuk melakukan transplantasi sum-sum tulang.

Disaat itu juga, GIPAP merekomendasikan obat baru (BMS-354825), obat ini khusus dibuat untuk pasien CML yang sudah resisten terhadap Gleevec, dan dari rekomendasi Prof.Patrick Tan kami merujuk ke Dr.Mickey Koh (Singapore General Hospital) untuk mengetahui lebih lanjut mengenai obat baru ini. Dari Dr.Mickey Koh kami mengetahui obat ini baru pada sebatas trial, dan di asia pasifik hanya di lakukan percobaan di Singapore General Hospital saja. Setelah melalui evaluasi kelayakan akan kondisi penyakit saya, akhirnya saya diterima untuk tahap percobaan obat BMS-354825, tetapi Dr.Mickey Koh kembali menasehati saya untuk melakukan transplantasi sum-sum tulang. Untuk pertama kali saya mengkonsumsi obat BMS-354825 pada tanggal 15 September 2005, selain BMS pihak keluarga juga mencoba untuk mencari pendonor sum-sum tulang yang cocok untuk saya, sebagai antisipasi bila obat baru ini gagal lagi.

Setelah 6 minggu mengkonsumsi obat BMS-354825 kondisi darah saya mulai menurun sampai level kritis, bahan saya harus melakukan transfusi darah dan trombosit setiap minggunya, dan hasil pengecekkan sum-sum tulang pada minggu keenam ini menunjukkan kondisi penyakit saya yang tidak mengalami perbaikkan, sekali lagi dokter menganjurkan transplantasi dengan persentasi kesuksesan untuk sembuh mencapai 60%.

Keluarga memang memiliki renacana mau melalkukan transplantansi sumsum tulang bagi saya. Akan tetapi biaya terlalu tinggi, sekitar +150.000 SGD, dengan menjual rumah pun saat ini biaya yang terkumpul hanya sekitar 50% dari biaya yang diperlukan

Oleh karena itu pihak keluarga dan saya, sangat mengharapkan biaya transplantasi sum-sum tulang ini dapat terkumpul secepatnya.

Hanya harapan dan semangat untuk tetap hidup yang menjadi kekuatan saya untuk melawan penyakit leukemia ini

Samiri & Keluarga