Makan

Sarah walked herself slowly to the dinner table, and sat down on the chair.

Mama : Sarah nak makan nasi?
Sarah : Makan nasi

Alhamdulillah. Mama ambilkan nasi dan lauk ayam yang Wak buatkan dan menyuap Sarah.

Tapi malangnya muka Sarah berubah setelah dia cuba menelan. Sarah takut muntah. Tak lama kemudian Sarah luahkan nasi tersebut.

Mama cuba lagi, lagi sekali Sarah tak mampu nak telan. Sarah cuba sendiri, di gonggong kaki ayam kedalam mulut dan menggigit, tapi lagi sekali Sarah luahkan balik.

Sarah frust dan mintak tolong ayah basuhkan tangan. Lepas tu Sarah duduk sebelah ayah. Ayah tengah makan malam. Sarah tengok je ayah makan.

Sarah : Nak fish (actually chicken, Sarah panggil ikan, ayam, etc fish)

Ayah pun cubit sedikit ayam dan suap Sarah.

Sarah : herghh...

Kecewa sebab tak boleh nak telan ayam secubit tu. Dan dia luahkan balik.

Kesian Sarah. Selera makan Sarah dah terbuka tapi Sarah tak mampu nak menelan, kesan dari ubat chemo.

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Kakak Mina

Semalam Mina cakap macam ni masa tengah makan..

"Sarah is very very very very very very very very very very sick. I don't like Sarah sick. I want Sarah to be strong!"

Ayah take it as a do'a from Kakak Mina...

@ Home

Sarah is back at home.

Yesterday masa ayah bawak keluar beg2 Sarah tengok je ayah kan dengan pandangan yang penuh soalan. Mungkin Sarah fikir, "ayah balik, tapi ayah tak pernah nak bawak Sarah balik"

Masa mama cakap tanya nak balik pun Sarah jawab "I dont want!". Mungkin Sarah dah penat kena tipu dengan mama, sebelum ni mama cakap nak balik tapi tak balik balik pun. Tak pun mama nak bawak Sarah pegi kat tempat lain, cucuk sana cucuk sini lagi.

Sampailah masa mama nak tukarkan baju hospital Sarah dengan baju dress finshess Sarah. Baru la Sarah percaya 'I'm going home!'.

Sarah at her spot. No one else can lie here accept with her permission.

Since we are at home, it's a BIG challenge now, especially for mama, to monitor Sarah's condition, to ensure Sarah does not fall sick, catch cold or flu, preventing germs attacking Sarah, nak bagi ubat etc. Kat hospital ada nurse, kat rumah???

Awish dan Mina also has to adjust having Sarah in her current condition.

Ayah dan mama will limit no of visitors, visiting time, and so on. A lot of things need to be put in place or put away. 

Sarah may have just returned home but it is just a beginning as BIGGER challenges await Sarah, mama, ayah, abang dan kakak.

Semoga Allah beri kami ketabahan berterusan menempuh dugaan ini. 

Allahuma Rabbi yassir wala tu'assir, rabbi tammim bil khoir

Ya tuhan permudahkan urusanku, permudahkanlah jangan disulitkan.

Insyaallah.

Note : Thank you to everyone yang mendoakan hingga kami mampu ke takat ini, dan insyaallah ke peringkat seterusnya. Really, thank you. And really, to everyone, tak tersebut nama setiap seorang. Allah jualah yang yang tahu dan dapat membalas jasa kalian.

Update 29 Jan 2011

Prof Dr Lin said today can go back. But after Sarah received the 200ml blood.

Strangely 'O' blood type was out of stock. They had to order from the blood bank.

Now, the blood is going into Sarah's body via the drip. Insyaallah, it'll finished by 5 0r 6pm.

Insyaallah Sarah will return home tonight.

Preparation at home :
1. Cleaning and mopping - done, albeit not all area covered by maid Ija, esp the small2 area
2. Hand sterilizer - checked - this is for Awish and Mina and visitors before touching Sarah
3. Additional pampers and baby wipes - done, thank you to Mak Andak
4. Place for Sarah to sleep - where not sure yet
5. Visiting hour - not yet determined, mama dan ayah have to enforce this, no choice, untuk kebaikan Sarah dan semua, sorry to pak2 dan mak2 saudara, kawan2 dan etc.
6. No of visitors per day - not yet determined,
7. Surgical mask - not yet, ayah dah tanya Guardian Puchong Jaya, abis stok
8. Sterilizer pill - not purchased yet
.
.
.
what else?

Abang Awish dan Kakak Mina, dah beberapa kali ayah ingatkan, don't touch Sarah with dirty hand; don't step on Sarah mattress, don't play with Sarah if not shower yet, don't make Sarah cry, don't..... , don't....

Ayah dan mama will do anything for you Sarah

Update 28 Jan 2011 @ 10:20pm - Day 8 @ SDMC

The day started in somewhat a high note, as we were told yesterday that Sarah can go back once another round of Blemycin and Etoposide finished. Some more Sarah's high fever has subsided to around 37 degree celcius.

Tapi bila Dr Lin masuk, mama diberitahu, based on yesterday's blood sample, homoglobin Sarah low, it was 7.5. It should be minimum 10. So doctor adviced to stay another night to take 2 bags of blood. So another nite in SDMC. Or could it be 2? Harap2 tidak?

Masa ayah sampai, Sarah mintak mamee, jadi ayah turun belikan kat 7E. Seronok ayah tengok Sarah makan mamee, banyak.. Walaupun tak berapa berkhasiat sangat tapi at least Sarah mintak nak makan mamee tu. Susu, nasi semua Sarah tak lalu dah.

Tapi...

Bila ayah balik dari sembahyang Jumaat, mama bagitau yang Sarah muntah banyak. Mamee pun keluar. Dan Sarah dah fobia nak makan mamee tu sebab takut muntah lagi.. Walhal doktor dah bagi ubat tahan muntah, tapi muntah jugak. Then, Dr Lin tukar jenis ubat muntah. Mungkin lagi power punya.
Terfikir jugak ayah, company ayah akan tanggung 100% ke bill ni nanti? Ah..kemudian lah fikir tu.

Ayah balik rumah petang, kesiankan Awish dan Mina. Walaupun kakak Sufiah ada, but they would need the parents macam mana pun kan. So ayah balik, bagi Awish dan Mina main kan luar rumah. Sayu ayah tengok kakak Mina kayuh basikal depan rumah....sampai Mina cakap "ayah, why are you standing there?"

Masa ayah balik ke hospital, mama bagitau Sarah allergic. Allergic to the blood given. Mula mula 100ml tu ok je, tiba-tiba mata dan telinga Sarah jadi merah, bengkak dan Sarah tergaru-garu.

Nurse bagi ubat allergic untuk counter allergy tu. Alhamdulillah, ubat tu berkesan untuk kurangkan allergy dan jugak buat Sarah tido. Rest ye sayang ayah.

Mama bagitau Sarah ada keinginan untuk makan nasi, ayam dan sup, tapi...sebab ubat chemo Sarah tak mampu nak telan semua tu. Dia luah balik walaupun dah masuk dalam mulut.

Ayah dan mama harap bila balik nanti, dengan environment yang Sarah biasa, dan suka, akan membantu Sarah untuk makan. Makan banyak2 ok Sarah..lawan..

Insyaallah.

Update 27 Jan 2011 @ 8:00pm - Day 7 @ SDMC

Another round of Blemycin and Etoposide.

Cisplatin that started yesterday completed at around 4pm.


Sarah reaction to the medicine
Sarah become more cranky. Milk intake lesser. Every now and then when mama ask "You want shushu hot?". Sarah will reply "Shushu hot". But Sarah would just hold the bottle in her hand without drinking. Because she afraid that she  would vomit. Infact early in the morning, she vomitted a 1 fl oz  that she had just drank.


Noon time her nausea caused her to vomit fluid 2 times.


But Sarah did eat Makcek's mee goreng which ayah brought from home and fish from the inhouse menu. Mee goreng about a spoon and fish maybe around about half an inch. Alhamdulillah, daripada langung takde makan apa-apa.


Fever
When Dr Lin came in the early morning round, he said Sarah's fever is subsiding, and she probably can go home tomorrow.


But sometimes at 10am her temperature shoot up to 39.7. The nurse and mother used wet towels to lower down her temperature. And hour later it dropped to around 38.9. In Dr. Lin's round at 2pm, he asked the nurse to change the antibiotic. Ayah believe to a stronger one. "I don't want to take the risk" he said. And he asked the nurse to take blood sample for fungus infection.


The nurse started the new antibiotic after that. By the time ayah go back at near 7pm the nurse has not checked Sarah's body temp yet. Hopefully Sarah's temperature going down. Bolehlah kita balik besok kan Sarah. Sarah nak balik umah kan? U wanna go home right?


Mama dan ayah
Mama dan ayah (mama sebenarnya, ayah tolong tengok je) belajar macam mana nak clean catheter dan flush the tube. Nampak senang tapi takut terlupa sterilized tangan atau tercemarkan area yang need to be super clean cum germ free.


Catheter kena clean 2 times a week.
Flushing once a weak.

Nampak tak heart shape belakang tu?

Kakak Mina yang buat untuk Sarah...dan mama

Just count the bottles

Sarah, get well soon.. semua orang mendoakan Sarah cepat sihat dan pulih sepenuhnya sayang. 

You have to be strong!!

Meet Malignant Germ Cell Tumor

Ayah tak tau nak explain but this is Maktam's explaination:

The whole thing yang besar to liver.

The left side tu yang lain sikit bulat tu tumour.

Go down lagi nampak left kidney dulu sebelah tulang spine tu.

Below is the radiologist report.

The tumor size is 10 X 11 X 9cm. How big? According to Maktam it's as big as Sarah's head.

More stories at Doa dan harapan untuk Dhia Maisarah.

Update 26 Jan 2011 @ 7:00pm - Day 6 @ SDMC

Tengah melukis

1st session chemo regime :

Blemycin 7.5mg 1 hour

Etoposide 60mg 1.5hr

Mannitol ~ 3hrs

Cisplatin 60mg 24hrs plus Calcium and Magnesium 48hrs

Potential Side effect (can be immediate, can be after few days) :

1. Appetite loss

2. Hair loss

3. Nausea/vomitting

4. Bone marrow supression

.

.

.

This list is not exaustive.

Alhamdulillah so far Sarah cope quite well with the chemo.

What mama dan ayah worry is she don't want to eat. Even her milk intake also is a bit reducing today. Everytime we offer food her answer is "I don't want!".

In a way mama dan ayah suka bila dengar "I don't want!" Sarah; sebab tu menunjukkan Sarah stubborn, fighting spirit is strong.

Be strong always Sarah. Insyaallah.

Update 25 Jan 2011 - Day 5 @ SDMC

Prof Dr Lin informed that the 1st session chemo will start tomorrow. It'll be BEP or BET and platinum. This is not so strong chemo but the platinum can be harmful to kidney and also hearing.
The 2nd session chemo will be the strong chemo.
And after every 2 session Sarah hearing and kidney will be checked.

Ya Allah, kau berikanlah kekuatan kepada Sarah ya Allah!

Doc also said there is high possibility the germ can relapse (appear again) in the future. And most likely place it will appear is ..the brain. Masyaallah.

Jadi for future refernce, CT scan untuk brain was also done.
Lepas scan sepatutnya hearing test, tapi Sarah tak cooperate sgt so kena buat masa dia tido.
Sarah masuk OT pukul 3 untuk masukkan chemoport. Kat situ masa dia tido, hearing test was done.

Balik ke bilik, nurse start drip termasuk some albumin.

Sarah minum susu, better than semalam. Dan makan ikan goreng, boleh tahan banyak.

Back at home Awish dan Mina are babysit by Makcek & Sufiah.

Ya Allah berikan kekuatan kepada kami sekeluarga menempuh dugaanMu ya Allah!

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Stage 4

Ini je antara kata2 yang ayah ingat daripada kata2 doktor yang banyak2 tu.
"....some more this is already stage 4..."

Ini yang kata kata yang paling terngiang-ngiang. Kata kata yang buat Ayah dan mama speechless. Kata kata yang menitiskan airmata mama dan ayah. Kata kata yang membuat ayah memandang jauh keluar tingkap tanpa sebarang makna. Kata kata yang membuat ayah berjalan mundar mandir sepanjang wad tanpa hala tuju.

Ayah dan mama understand now, kenapa doktor2, both paed & onco, macam berat nak cakap.

"it's malignant germ cell tumor.."

"the tumor is..verrry big.."

"Alphafetoprotein is very very high"

"the good news is this cancer is very responsive to chemo"

Kini ayah dan mama berpegang pada kata kata yang akhir.

Ya Allah, kuatkanlah kami sekeluarga untuk menempuh dugaanMu.

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Germ Cell Tumor & the five Procedure

Which is which?
After neuroblatosma, nephroblatosma, now germ cell tumor. Diagnosis still not completed.
Which one is better? None. Not for Sarah.

To know which one, tomorrow, 5 procedure will be done on Sarah :
1. Bone merrow aspiration
2. Liver biopsy
3. Tumor biopsy
4. Lumbar puncture
5. Hepline

Just get it done and cure Sarah.

Ya Allah, sembuhkanlah Sarah..

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Nephroblastoma??

The truth has not really sinked in. How ayah wish tomorrow when ayah wake up, this is just another bad dream.

Ayah ajar abang Awish doa lepas sembahyang - 'Ya Allah, aku merayu kepadaMu, kau sembuhkanlah penyakit adikku Dhia Maisarah, ya Allah yang maha agung.'

Sarah you are a fighter. Be a strong fighter. Doa ayah, mama, abang, dan semua yang menyayangi Sarah akan membantu Sarah.

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Sarah Part 4 : Menonggengs Tidosa

Menonggeng Tidosa = Tido menonggeng.

Rasanya dia tengah mimpi merempit. Tengok tangan tu, macam pulas handle motor. Kaki pulak silang macam buat aksi superman. Mata tutup sebab angin kuat..motor laju la katakan..

Sarah Part 3 : Aneroxia Nervosa?

Sejak balik dari Langkawi Sarah berubah dari makan sikit2 tapi berulang2 kepada almost tak mau makan apa2. At one time sampai 3 hari tak makan apa-apa. Cuma minum susu.

Daripada Sarah yang berisi dan aktif kepada Sarah yang kurus kering dan cepat lesu.

Badan dah nampak tulang rusuk, pipi cengkung, muka dah tak bulat tapi dah memanjang, tulang pelvik pun dah nampak.

Last 2-3 days macam macam Mama beli cuba untuk membuka selera Sarah untuk makan. Bawak jumpa doktor included. Tapi doktor diagnose kata tak ada apa2. Secret Recipe kek, hotdog bun, fish nugget, nestum,...apa lagi...

Sarah, mana pegi selera makan sayang.

Sarah 'melantak' in November. Pipi bulat.

Sarah in January. Pipi cengkung (in real life lagi nampak). Susu je Sarah berselera.

Get well soon.

Sarah Part 2 : Eidetic Memory

Eidetic Memory = Photographic Memory

Sarah suka main jigsaw puzzle. First dia akan tengok Mina buat. Lepas tu buat sendiri.

Yang ni puzzle block Dora. Actually Sarah punya, beli kat Sg Wang, Mina yang tunjukajar Sarah.

Yang ni jigsaw puzzle princess Mina punya.

Sarah Part 1 : Jahat

Bukan Sarah jahat tapi...

Aku aku
Bagaikan sudah terkena mantera cinta
Dari manakah kau datang menyerang
Diriku diriku
Yang disangka kebal
Oh jahatnya kamu
Jahatnya kamu

Lagu Stacy..

Ntah macamana ntah, dan bila masa ntah, lagu Jahat ni jadi lagu favourite Sarah.

Bukti -

Masa AJL hari tu, pukul 8 mlm Sarah dah tido, depan TV. Tido dengan nyenyaknya. Mama, ayah, maktok layan AJL. Bila time lagu yang last, lagu Jahat Stacy, Sarah boleh bukak mata tu, celik dan terus layan Stacy.

Faces of Mina

Dengan adanya basikal, Mina kini makin gelap. Apa taknya, mathari tegak atas kepala pun sibuk main basikal...

Nak cakap sikit...

Cikgu Azami : Darwish ni..saya nak cakap sikit...
Ayah : Apa dia cikgu? (selamba, dah tau apa cikgu nak cakap)
Cikgu Azami : Darwish ni masa belajar...(berenti macam fikir macam mana nak cakap)
Ayah : ..selalu khayal? (dalam hati, lambat sangat cikgu nak cakap)
Cikgu Azami : Ha ah, selalu khayal..
Ayah : ..selalu hilang tumpuan?
Cikgu Azami : Hmm..kalau ada kerja-kerja yang kena salin tu selalu tak habis.
Ayah : Dia memang ada masalah tu cikgu.
Cikgu Azami : Saya dah perhatikan dari mula-mula hari tu, semalam (sambil menunjuk ke meja murid) saya dah pindahkan duduk kat meja depan.
Ayah : Terima kasih cikgu, dia memang kena duduk depan. Dari tadika lagi, cikgu-cikgu dia memang dudukkan dia kat depan, sebab nak kena tengok-tengokkan dia.Darwish ni sebenarnya ada mild ADD.
Cikgu Azami : ADD?? (apa benda tu, Akhbar Dalam Darjah ke??)
Ayah : Attention Deficit Disorder. Selalu dan senang hilang tumpuan. Kalau tengah kerja ada distraction sikit dia terus hilang fokus. Kena perhatian lebih sikit Darwish ni..
Cikgu Azami : Memang kena perhatikan...Lagi satu dia suka cakap dengan kawan..
Ayah : Haa memang, kerja tak abis lagi dah sibuk nak bercakap dengan kawan-kawan dia kan?
Cikgu Azami : Haah betul..
Ayah : Saya mintak jasa baik cikgu, tolong tengok tengokkan dia. Dia ni kena perhatian lebih sikit.
Cikgu Azami : Saya faham, Sebab tu saya dudukkan dia kat depan tu.
Ayah : Kitorang tau, kalau salin kerja selalu tak abis, kalau buat kerja rumah, kerja yang budak biasa buat 1 jam dia buat 3 jam tak tentu siap lagi. Saya mintak tolong cikgu tengok tengokkan dia.
Cikgu Azami : Ok baik. Saya akan perhatikan..

DARWISH!!! ANDA DALAM PERHATIAN!!

Gulliver's Travel

It was fun for Awish and Sarah but Mina....at the beginning of the movie Mina asyik cakap, I don't this I want Transformer. Sebabnya sebelum cerita ni keluar ada sedutan movie Transformer baru.

Bila Gulliver dah sampai kat Liliput, Mina dok cakap pulak, dengan mulut memuncung "I don't want this movie. The giant will it the small people. It's not nice".

Dah separuh cerita Mina sibuk nak popcorn pulak. Mama dan ayah tak belikan popcorn sebab baru sangat makan kat Papa John's, kenyang lagi.

But finally, dah abis cerita, keluar panggung, ayah dah belikan panggung, ayah tanya Mina "Best tak cerita tadi"

Mina : "Best!"

Ayah : ........(Kids.)

Awish dan Sarah memang enjoy tengok cerita ni. Sarah siap gelak kuat2 lagi. Awish siap berenti kencing lagi...?? Maksud ayah, lepas abis kencing, Awish siap berlari lagi balik ke panggung, sebab takut terlepas aksi2 penting.

Tapi ayah bagi 2 out of 5 je cerita ni. Cerita tak mencabar tu ok, tapi kalau macam tu kena la ada ada banyak lawak slapstick. Macam Hantu Mak Limah nye cerita.

But who cares what ayah think. It's for AMS, as part of end of school holiday prog. and Sarah's birthday outing.

1.1.11 Sarah's 3rd Birthday

For the past few days, Awish dan Mina dah mewar-warkan Sarah Sabtu dia punya birthday. "Nanti kita beli kek ok", kata Awish.

So bila Sarah bangun pagi 1.1.11, bila cakap je "Sarah Happy Birthday" dia punya response adalah "I want cake".

Mama dressed her for the occasion - macam biasalah frinshess (princess) dress, beli the day before. Plan memang nak beli kek. Tapi sebelum tu makan2 dan tengok wayang kat IOI Mall.

Aren't they sweet?

Sarah was also make-up for the occasion. Cuba zoom tengok mata dan bibir.

Lepas tengok wayang, beli kek dan terus balik rumah, makan sama-sama dengan maktuk. Tapi kali Secret's Recipe tak sponsor kek. King's Confectionary yang sponsor.

Awish yang sibuk pilih kek yang mana mulanya. Tapi pasti kek pilihan birthday girl yg jadi pilihan.

Sarah senyum bukan main lebar masa kitorang nyanyi "Happy birthday to you, happy....."

Pandai anak dara ayah ni tiup lilin. 2 kali tiup je.

Budak2 memang suka kek, tambah lagi birthday kek.

Maktok pun merasa kek Sarah.

Happy 3rd birthday Sarah, mama dan ayah loves you.

Insert: Food Review
Makan kat Pizza Papa John's sebelum tengok wayang : the Good and the Bad. Let's start with the good one first.
1. It's cheper than Pizza's Hut or Shakey's
2. Food yang di order lagi sedap dari the other two
3. Er....
4. .....ada lagi ke?....

Ok lah. Let's go to the bad.
1. There's no lasagna in the menu - Awish was extremely sad. Managed to console him
2. There's only 2 size of pizza compared to the other two.
3. The half-half can only for one of the size, not like the other two.
4. Appetizer came after the main dish. Soup was late and garden salad (it's simple to make this right) came when we were almost finished our meal.
5. Ordering - they missed some things that we've ordered. Luckily we checked the bill that came first before the first food arrived.
6. Waitress was always busy, busy figuring out what they supposed to do. Run here and there, and there but to no avail.
7. Paying time was actually painfull time - they misplaced my bill, and keep asking whether I received the bill or not. NO! I don't received, you don't give, "where it is" you asked me? Go figure yourself. And there was another customer shouting at that same moment, because they did not received their pizza yet whilst their wayang starting in 5 minutes time. After like half an hour (feels like) they reprint the bill and as a consolation give me RM1.45 discount.

Paid the amount and blah. We were already late for our movie. Yang bestnya, customer yang marah-marah tu duduk belakang kitorang kat panggung. Dengar dia sebut2 tak makan, cuma dapat wedges je...bla bla bla.. Kesian..

Cuba korang kira ada berapa garpu...(Awish kena pau)

Enuff about the pizza, let's see more of our birthday girl.

I'm 3 years old...!!!