birthday bash faris dan fahmi

last saturday, lepas balik dari spital for iman's forcarnet infusion we all organise small gathering to celebrate birthday fahmi and faris. cume sempat masak mee bandung dan wat ceasar salad, yg lain oder je dari kedai, order from kedai arab kat bdr sri permaisuri (purple gloria).

Goody bags dah ready and my assistants (3 org tu lah) yg tolong pack all the sweets, jelly, balloon and etc dalam bag. so ni lah hasilnya.. taddaaa.

Cake ordered by wancu from Anis Bakery, Red Velvet cake with picture of cars on it. Soooo delicious.

the birthday cake, sponsored by wancu.. thanks wancu

potong cake beramai2..alamak birthday boy kecik x nampak muka plak..

iman pun take part jugak walau tangan berbalut sbb monday and tuesday kena continue IV forcarnet

In my mind memang plan nak wat mcm2 games for the kids, just wanna make them happy tapi cuma sempat buat coloring contest, pastu derang main bubble dan menari ala2 chicken dance. Tapi nampaknya iman dan the rest of the kids had a great time..

coloring contest..

The masterpieces from the talented artist

It seems that everyone are sooo talented, so each one of them receive a gift from the house

Another proud artist

comot muka sbb adik keje keras kan....

Nak main bubble plak, ready to blow some bubble..

Chicken dance ke joget lambak?

so function habis jam 6.00, alhamdulillah semuanya berjalan lancar. Tgk muka budak2 nih happy.. itulah nikmat yg amat ternilai kan..

Insyaallah akan organise the same party at my hometown plak utk semua geng2 budak2 nih kat sana.. will update later.



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iman dan adik kesekolah

On 29/12 iman went to his school at Taman Midah 1 for his standard 1 orientation. Now they have different module as compared to my schooling dulu.. dulu KBSR, now KSSR.. now they got LINUS somemore (literasi dan numerasi). Among information yg school require is his medical record for imunisation purposes. He cant get any imunisation until end of april due to his previous chemo treatment. So we decided not to get any injection from the school. Better ambik his injection from the hospital kan.

Anyway iman sangat seronok ke sekolah. Kami dah ready dgn cuti seminggu takut dia ada masalah di sekolah. Alhamdulillah he can easily adapt to the new environment. Sebab dia 'special', ramai kat sek yg bertanya dan concern pasal dia. Jadi kami x risau sangat. Cikgu2 sangat baik hati dan jaga iman. Iman byk ignore if people stares at him. Kami dah ajar dia kalau ada org ejek dia, biarkan aje sbb kita yg sabar pasti diberikan ganjaran dari Allah.  Syukur pada Allah kerana dipermudahkan perjalanan Iman di sekolah.

Iman masuk kelas 1E... No. 14 from 42

Few days after school dia peluk saya dan kata iman suka sangat ke sekolah, dia kata lagi dia nak belajar rajin2 sbb nak balas jasa ibu.. ibu byk berkorban utk iman. Dan saya tahan air mata saya sbb saya x nak dia sedih.. Bersyukurnya kerana dikurniakan nikmat ini ya Allah. Kurniaan-Mu yg sangat berharga.

iman and his friend during assembly

Pada masa yg sama, adik pun ke kindergarten kat belakang rumah. Dia pun nampaknya ok di school. Tggu few days more macam mana pulak.. 

Adik balik sekolah,, best ke tu

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Corat Coret Kenduri Kesyukuran dan Doa Selamat

Baru dapat mengupdate pasal majlis Kenduri Kesyukuran dan Doa Selamat held on 29/10/2011. Alhamdulillah semuanya berjalan dengan lancar.  Sebenarnya majlis nih lebih kepada doa selamat dan bacaan yasin, tapi memandangkan imannya birthday pun jatuh  bln 10, we all celebrate sekali birtday dia.. a bit belated lah.  

birthday cake iman, thanks kaksal and family for this special cake. Thanks kepada tokeh cake jugak; kyang and family

Cutting cake ceremony.. senyum lebar iman dapat cake yg lagi tinggi dari dia.. haha

adik pun tumpang sekaki.. sempat adik pesan kat ibu; adik pun nak cake birthday cenggini..

Background belakang : saya dan kak sal

Food by caterer nur idaman (they have restaurant  Nur Idaman, located at belakang hospital pusrawi lama) ramai yg komen kata sedap and the food comes together with cute little cuppies .. amat worth it. Ayam berempahnya sgt menjilat jari.. haha.. So sesapa nak pakai caterer blh contact saya utk dapatkan contact number azhah nih ye..Ada few foods di masakkan oleh family jugak mcm udang merah, udang sweet sour, bubur kacang, cocktail dan mcm2 lagi.  

Colorful Cupcakes

Paling best kami sempat berjumpa dgn salah seorang penderma platelet iman, kami x penah jumpa, 1^st time jumpa nih, kami harap dgn platelet yg dia dermakan sikit sebanyak akan jadikan iman org yg baik mcm penderma sorang ni, dan moga hubungan ini x stop di sini saja, lagi pun darah dia dah jadi sebahagian darah iman..

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CMV PCR reactivation

Rasa dah dkt 3 bln iman habis treatment transplant, Alhamdulillah berat badan dia pun dah naik sikit.. Nampak lah sikit daging kat pipi dia tuh..rambut pun nampaknya dah lebat, Cuma kat belakang kepala : area yg buat radioterapi still x tumbuh rambut.. katanya kena tunggu setahun jugak sblm rambut tu tumbuh.. kami dok lumur ngan minyak zaiton yg dah dibacakan yasin.. insyaallah, x lama lagi tumbuhlah rambut dia tu.

Walaupun dah habis tapi maintenance wise, iman still kene pi hospital every week utk cek darah for his CMV PCR a.ka. virus. Cuma 2 kali blood result yg CMV PCR dia negative, yang lain semua positif.

Bila sekali positive, once a week amik darah dia akan masukkan antiviral foscarnet sekali for 4 hours, then bila run test again (btw the test is done in Singapore), still positif, so doctor increasekan dosage jadik 2 kali seminggu.. pastu test lagi still positif,, then doctor increasekan jadi 3 kali seminggu.. nih cek jgnlah positif lagi.. kami yg membawanya ke hospital pun dah letih, inikan iman, dia asyik tanya sampai bila nak cucuk masuk ubat.. we all cakaplah sampai virus dlm bdn iman x ada.. virus tu suka sgt kat iman, tu sbb iman kena makan byk, dia senyaplah lepas tuh..

time amik darah tu memang meraunglah, vein dia plak lepas kemo memang makin kecik, lagiklah bila kena amik darah every week..lagilah teruk.. smlm masa amik darah kena cucuk 2 kali, tukar jarum paling kecik pun still x kuar darah gak.. meraung dia kata sakit.. sian sgt.. tapi nak wat mcm mana, air mata nih memang nak mengalir laju je lah tapi kena tahan gak sbb x nak dia jadi weak tgk mak dia lemau mcm tuh… uwhaaa..

Iman pun dah 2 kali ke As Syifa Al Hidayah ngan ustaz lokman kat Gombak..luckily saya dah dapat prorate cuti.. so bolehlah bwk dia pi sana.. so ustaz kata imannya sel kanser dah jadi dormant, dan utk matikan full sel kanser nih hanya boleh melalui bacaan ayat al Quran. Kami percaya, semua penyakit kecuali mati ada penyembuhnya di dalam al quran. So ustaz lokman kata utk elak sel yg tgh tido nih terjaga ada 4 benda kene monitor

a)      Balance diet – including no red meat

b)      No stress

c)       Plenty of rest

d)      Exercise – main tu kire aktiviti exercise gakkan

 Insyaallah kami akan teruskan usaha ni sampai bila2. Doakan iman terus sihat. 

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Selamat Ulang Tahun Iman

Alhamdulillah, syukur kepada-Mu ya Allah kerana memberi kami peluang ini. Peluang utk melihat iman menyambut ulang tahun yg ke 6. Umur dia masih panjang dan untuk itu kami sujud syukur utk segala nikmat dan kebesaran-Mu ini ya Allah.

Insyaallah, kami akan mengadakan majlis doa selamat kesyukuran pada hari sabtu ini (29hb) sbg tanda kesyukuran kami dan sbg tanda penghargaan kepada keluarga dan rakan2 yg sentiasa memberikan positive support to us, non stop.

Doakan kesihatan iman yg berpanjangan, moga dia bebas kanser utk selama2nya.

Utk yg mengenali kami, sudi2kan hadir ke majlis tersebut. Do contact me @ fiza2012@gmail.com for detail address.

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standard one

Last 2 week iman undergo some hearing aid test at SJMC. Yes iman need to use hearing aid cos his hearing deteriorated; side effect of the chemo treatment. This time we have to pay on our own cos the hearing aid cost is not covered by my husband’s medical benefit. We’ll find other means for this definitely..

Ok back to this topic. The audiologist suggested us to check with iman’s school whether they accept child with this kind of disability. After explaining of iman’s condition the school staff passed the telephone to the headmistress. To my shocking, she tell me to find better school means with lesser pupils per class, her concern is that that the teacher assigned to the class won’t be able to focus on Iman. I said iman won’t need extra attention because he is just like normal kids. He can have normal conversation, it just that he is using hearing aid to assist him to listen to certain pronunciation.

Well, after so much argument, she said I know my son better.. so it is up to me to pick the best school for my son. I u/stand the school must have certain standard to attain. Some kind of KPI to make sure they achieve certain passing rate etc. Apart of achieving the KPI, i wonder how about teacher's responsibility to educate the children. No matter how hard it will be. What makes me so sad is that she kinda reluctant to accept him without seeing him first. He is really bright boy and very gifted too.

We cant send him to special school cos he can speak like normal people do and if he learn special language, the audiologist said iman will eventually loose his capability to speak. Please understand his condition. This is not something he wanted.

As preparation iman is learning twice a week; home tuition. Next week he'll start his agama class. Iman will shine, as what his tuition teacher said, he's very determine to learn and very obidient.. I know he'll prove to others he can do it.

Uncle dan auntie semua doakan iman ye

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Beginning of new chapter

Alhamdulillah, saya dah start keje balik selepas hari raya. Rasa sedih nak tinggalkan budak2 di rumah, sedih macam mana makanan budak2 nanti, macam mana dgn susu mereka semua, sapa nak monitor derang wat keje sekolah (walau derang x pi sekolah. hehe), kalau ibu yg menjaga mungkin makan dan pakai akan lebih terjaga. Tapi nak buat mcm mana, kena cari rezki utk mereka jugak. Pulak tu dgn bibik yg baru (temporary utk 3 bulan saja sampai mid Nov), belum biasa lagi. HAti tu rasa berat sangat, tapi terpaksa gagahkan jugak. Bibik lama saya akan balik sini balik awal bulan 10 nih, lega den.

Nasib baik adik saya yg bercuti (USIM undergrad) sanggup utk tgk2 kan budak2 di rumah utk seminggu sebelum dia mula kuliah balik. Anak2 saya diserang muntah2 x berenti, sorang demi sorang kena. Mula2 fahmi, then adik, then iman, then saya dan last sekali husband. Mungkin betul virus sbb sepupu2 kat kampong pun di serang muntah2 jugak.Nasib baik bibik x kena. Dan ada hikmahnya adik ada di rumah that whole week utk monitor. Bersyukur sbb muntah2 nih x menyebabkan demam, kalau imam demam kena admit hospital pulak.

Makanya routine memasak di waktu pagi bermula kembali..seawal 4.30 pagi saya akan bangun utk masakkan lauk dan b/fast  utk budak2. Memang penat, tapi rasa puas dpt masakkan s/thing utk diorang, at least I give something in replacement of I’m not being at home –  ada jugak time bila saya balik opis iman peluk saya.. 'sedapnya ibu masak'.. jadi hati nih berbunga utk memasak utk derang plus ibu memasak dgn penuh kasih sayang tau.. (Hazie: aku cedok ayat ko, hehe)..

Sangat bersyukurnya saya sbb so far ni saya x bermasalah utk balik awal, mungkin once in a while kena stay back, acceptable for me sbb requirement keja utk siapkan audit report, dah nama pun keje tapi most of the time boleh balik on time..

Iman sgt happy di rumah, every saturday kene pi hospital utk msk antiviral, nak psg alat tu yg payah..tapi saya tahu dia kuat.. dia dah tumbuh rambut sikit, tapi rambut dia nipis2, harap sgt rambut dia tumbuh full utk cover dia punya shunt, so that dia x adalar kena menjawab dgn kawan2 di sekolah nanti. 

Happy kat kg sambut raye.. hooray

my really really big family, my family theme red color, credit to kimi's office mate for sponsoring the kids' baju raye

our stay at Royale Chulan, mana fahmi nih.. aghhh he is back in the toilet again... buat site visit

Pun tgh dlm proses utk dptkan tuitor utk iman dan adik, as preparation before iman naik standard 1, dan adik; kindergarten, last week tuitor tu berkenal-kenalan dulu dgn budak2 nih. Adik seems eager to meet her, Cuma iman nih bermasalah sikit sbb diakan pemalu..tgk nanti macam mana, kene pujuk dia..

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catheter iman jadi rumah bakteria

turn out catheter iman dah jadi rumah utk bakteria, bakteria to from various sources, environment, food and etc. 3 kali buat wat blood culture bakteria tu masih ada. Doktor lin very certain yg catheter iman ada bakteria tu. So last saturday buat prosedur to remove the catheter.. caranya doktor kena tarik keluar dari badan dia.. seram bila dengar tapi terpaksa jugak buat kan.. tapi doktor bagi sedatif to make him sleeps thru out the procedure.

Problem arise bila nak ambik darah lar nanti utk buat blood test, atau nak infuse any medicine.. semua kena cucuk.. tu yg masalah.. iman memang phobia kalau bab cucuk2 nih.. last monday doctor wat cek darah terpaksa buat finger prick,, itupun habis kami dicubitnya.. di tendang.. kena banyak sabar sbb dia pun mesti sakit kan,..

Blood result shows good recovery of his white cell and platelet.. white cell dah normal and platelet dah naik 130 from 35.. yahhoo.. seronok betul.. doktor kata platelet dia lambat normal dulu sbb ada bakteria kat catheter tu lar. Cuma doktor worried about residual bakteria in his body  tho he's already on antibiotik, so this saturday akan ada msk ubat lagi.. mintak2 ok lar dia nak kena cucuk nanti.. erm
x kisah lar kan asalkan iman sihat.. kena pujuk lar lepas tuh..

Disempatan ni saya nak amik kesempatan ni utk memohon maaf jika ada salah dan silap saya dan moga Allah pelihara amalan kita di bulan2 yang mendatang.

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Rezeki yang tidak putus

Sesungguhnya apabila diduga dgn ujian ini, kami berserah pada Allah dengan caturanNya. Alhamdulillah, syukur ku panjatkan kerana rezeki kami tidak pernah putus. Segala2nya telah di atur olehNya.

Dah 7 bln saya x bekeja duduk plak di KL ni kalau sorang je yg bekeja memang payah. We foresee we'll face financial problem eventually,, tapi alhamdulillah rezeki kami masih murah. Kami masih mampu makan apa yg kami ingini. Allah mudahkan jalan kami.

Macam persiapan raya, kami x pernah fikir sangat kerana sibuk di hospital, tapi Alhamdulillah  rezeki anak2, baju melayu derang dah di'sponsor' oleh officemate husband. Pastu family ada yg sponsor baju2 lain. Baju saya kakak dan adik2 ada sponsor.. kuih raya kakak bagi.. so basicly everything is well taken off. Itular percaturan Allah. Dia lebih tahu dan moga kebaikan yg diberikan oleh keluarga dan kawan2 akan dibalas dengan pahala di berganda di 'sana' nanti.

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Anakku Brain Tumor

saya baru habis baca buku anakku brain tumour (thanks to my fren azira for lending me this book). The writer adalah isteri kepada anggota kumpulan nasyid raihan. Anaknya pun ada brain tumour / cancer. Simptom2 yg dihadapi oleh anaknya more or less sama dgn iman. bermula dgn pening, muntah2.. bila ingat balik semua tuh seram sejuk satu badan memikirkan kesakitan yg telah ditanggung oleh iman, budak2 yg tak tahu apa2 lagi.

Perasaan bile diberitakan anak ada tumour sungguh menyayat hati.. umpama satu batu besar menghempap kepala dan badan kami.. ingatan itu akan sentiasa subur dlm diri kami, ingatan itu buat kami tersedar betapa besarnya kekuasa Allah.. yang menjadikan kesakitan dan menjadikan penyembuh dlm pelbagai bentuk.

Dlm buku nih, anaknya Baihaqi selamat menjalani pembedahan shunt untuk reduce pressure dlm otak akibat terlampau byk cecair dlm kepala. Namun Baihaqi tidak menjalani pembedahan yg kedua, yg paling major utk membuang tumour dlm otaknya. Both of the parent nekad utk membuat rawatan alternatif selepas hati mereka berat utk tidak proceed dgn operation like 2-3 hrs before operation.

Sesungguhnya kuasa allah mengatasi segala-galanya, be it modern or alternatif, kuasa utk menyembuh adalah milik-Nya. Berkat doa dan ayat2 al Quran, pelbagai ubatan alternatif dan penjagaan pemakanan yg jitu, Baihaqi kembali normal. Alhamdulillah ku panjatkan doa moga Baihaqi sihat utk selama-lamanya.

Di dlm buku ini byk amalan2 doa, ayat2 al quran dan list makanan yg elok utk pesakit kanser utk di amalkan. Sangat berguna utk yang tercari2 amalan yg sesuai utk anak yang kurang sihat, not necessary cancer. Panduan solat pun ada, all in all a very good book to read.

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back to hospital

batuk si fahmi anak yg bongsu dah berlarutan since 3 weeks.. kali ni makin teruk demam x kebah2 and ada bunyi kat dada dia.. bwk pergi hospital kena admit lar.. Vein dia too small so doctor x blh msk ubat ikut tiub.. kena inject.. terpekik melolong si kecik ni.. tapi dlm sakit2 tu masih melasak jugak,  dgn x ada maid nih memang kelam kabut,, nasib baik mak dr kg boleh tolong tgk2 faris kat umah..

x lama lepas si kecik admit,, iman plak demam.. shoot terus 40 degrees.. sbb imun very low dia mudah dpt jangkitan.. lepas bagi ubat demam turun jugak sikit,, tgh malam tu naik balik 39 degrees, memang kena admit lar. Doktor memang dah bagitahu kalau exceed 38 kena msk ward..

Apparently ada 3 bugs dlm darah iman.. ada 1 tuh vey nasty kalau lambat bawak memang his health will be at risk. Alhamdulillah husband bwk cepat.. after so much persuasion ngan doktor dptlar dia sebilik ngan adik dia.. lega.. kalau x kejap lari bilik iman dan bilik sikecik.. Lepas 4 hari sikecik blh keluar tinggal lar iman sorang, mengalir air mata dia bile dia dgr doktor kata he has to be here for at least a week.. sian dia

as of now demam dia belum kebah lagi.. range 39 to 40 degrees.. doktor dah start bagi antibiotik yg kuat sikit. Tolong doakan dia cepat pulih.. sian dia nak main bunga api x puas lagi,, asyik terkurung kat sini.. nampak dia letih sgt.. sian anak ibu ni

Lepas nih kene lagi beware psl pemakanan.. persekitaran semua.. iman akan cpt kena jangkitan.. esp highly spreadable deseases mcm chickenpox.. moga x ada lagi jangkitan lepas ni,, Amin

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Ibu dah baca doa naik kenderaan x?

3 minggu sudah kereta yg saya drive accident timea nak parking kereta utk ke klinik waktu tu. Waktu tu bawak si kecik dan faris utk follow up batuk derang x baik2.. husband waktu tu jaga iman kat spital lagi.. memang nak pitam rasanya jadi benda macam nih.

Time nak parking tu lar dek ada gangguan,, fahmi memang jenis x duduk diam.. alar nama pun bebdk. 1st time bwk se kecik dan dia memang x duduk kat car seat (totally my fault),, pikir sbb dekat aje and car seat waktu tu x adjust lagi.. patutlar time nak pergi tuh rasa x sedap hati.. Langgar tepi kereta sebelah dan depan langgar dinding.. Whatever reason lepas nih memang kene pakai car seat..

Ramai yg datang tolong and hantar kereta balik rumah, then friend husband tolong arrangekan dengan workshop and negotiate best price utk repair.. Terima kasih sgt sbb tolong kami moga allah balas jasa uol. kiranya dorang arrangekan semua.. terima kasih yang tak terhingga dari kami.

Few days later bile iman dah balik dari hospital iman tanya psl apa accident,, ibu x baca doa naik kenderaan ye.. gulp tergamam sekejap.. sib baik ibu baca doa tu, alhamdulillah adik dan fahmi x ada apa2. mungkin kalau x baca doa akan jadi lebih teruk. Alhamdulillah syukur x ada jadi apa2.. Dugaan datang menjengah lagi, moga kami diberikan kesabaran dan ketabahan utk hadapi dugaan-Mu ini.

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Syukur kepada-Mu Ya Allah

Iman discaj smlm, alhamdulillah.. dapatlar kami berbuka bersama utk 1st day ramadhan.. keberkatan ramadhan, kami dapat berkumpul semula.. walau kena ulang ke hospital utk cek darah and masuk platelet.. at least semua ada di rumah.. Syukur tak terhingga pada-Mu Ya Allah. Sunyinya x ada iman, x ada suami di rumah.. walau ada budak dua org nih tapi rasa  kosong je..

Iman dah okay sikit,, sakit perut dan lenguh2 tuh dah berkurangan. Rasa mood di rumah lebih menggembirakan dia.. tenguk keletah adik2.. tergelak2 dia.. hehe,, moga kegembiraan ini akan membuat dia cepat sembuh.

It's very tiring kat umah jaga anak2 nih dgn x ada bibik.. agen saya masih lagi gagal utk supply bibik yg elok utk kami.. yg latest lari dari  umah.. smlm dia lari.. masa dtg umah saya cek beg dia saya jumpa rokok. Nasib baik saya cek.. kalau idak sampai ke sudah x tahu. Of cos lar dia x mengaku.. kata kawan dia punya.. ntah lar bulan posa nih maleh nak gaduh2.. nasib baik jugak dia lari masa saya di rumah.. seribu mcm kisah kalau citer psl bibik nih.. boleh buat buku cerita hikayat seribu satu malam.. haha

Dan satu lagi berita gembira, saya dah dapat kerja yg saya idamkan.. Alhamdulillah.. Perks dia pun not bad. So gembira sgt, kalau x ada apa2 lepas raya start kerja. Moga dgn pekerjaan ini saya akan jadi isteri, ibu dan insan yang lebih baik. Moga Allah pelihara diriku dan melimpahkan rahmah-Nya selalu kepadaku seluruh keluarga.

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Mudahnya air mata nih mengalir

Syukur ku panjatkan iman almost completes all treatment, arini ada msk darah, smlm platelet.. everyday ada injection.. dan biasanya hari ke-6 after transplant ada 1 ubat kemo. Alhamdulillah semua ok. Dan harini white cell dia 0.0. Langsung x ada askar utk melawan penyakit. Paling rendah. Selalu (the 1st 3 cycles) the lowest is 0.1. Tak jauh beza sangat pun kan sebenarnya, dan based on records, his imun will increase starting day 8, which will be this saturday. X sabar rasanya menunggu.

Separuh beban hati nih dah kurang bila iman dah almost complete his kemo cycle. Tapi anak no. 2 saya pulak yang tgh sedih2, meraung sbb rindu yg teramat dkt ibu dan of cos sgt nak jumpa abang dia iman.. Abnag yang jadi teman bercakap, bermain.. tido sama2.. I have to leave them dgn my sister sbb saya ada masalah dgn maid yg baru. Malam2 dia menangis teresak2 rindu kat kami..  dah 10 hari kami x jumpa. Terpaksa sbb iman lebih memerlukan saya di hospital. Husband busy with his works even during weekend.

Adik tunggu depan pintu seperti menunggu kepulangan kami. And when i called him yesterday, memang dia meraung sekuat hati. Hati ibu mana yang boleh tahan x dpt peluk anak and console him.

He only stop crying lepas i make a promise that i'll be back in 2 days. If my new maid arrives lar. Harap sgt dapat maid secepat mungkin. Senang sikit nak ulang alik kalau dok umah sendiri. Berdoa moga semuanya as plan.

Rasa x kuat sgt.. i keluar dari bilik (nasib baik husband dah balik dr opis) dan meraung sekuat hati kat lobby hospital.. terima kasih kawan2 yg mendoakan semua urusan saya dipermudahkan, dan memberikan kata2 semangat. Cuma dapat bertasbih pada -Mu ya Allah.. moga dgn ini,  gelisah hati ku ini dapat dikurangkan.

This week i got to know this blog http://miera301.blogspot.com/2011/07/update-norma.html specially dedicated for her sis in law Norma who has similar cancer as iman. Resection dan buat, radio pun sudah half way. Sungguh hebat dugaan yang ditimpakan ke atas norma sekeluarga. Baby norma baru 2 bln masa she was diagnose with brain cancer, stage 4. Air mata nih x berhenti mengalir bila memikir beratnya dugaan mereka. Mohon war2kan pd yang lain dan bantulah norma semampunya, moga dgn bantuan kalian dapat meringankan beban mereka dan moga Allah meringankan beban kita pula nanti sama ada di dunia atau di akhirat.

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Alhamdulillah

Alhamdulillah, i am offerred a job. It's really a good offer considering the fact that i'm not working now, they are willing to wait until my son's treatment completes. In fact they agree to extend the commencement date after raya i.e. in September. The perks are really good. I mean they are offering almost 30% from my previous salary. But now with what happened, salary is not my main concern.

What i'm looking for is flexibility for my family especially after what we had gone through. I dont want to be drift away from my family. There are so much things to do, so much lacking in my life.  

Alhamdulillah although we learnt the hard way, we are given this opportunity, Allah still loves us and give us another chance.

I'm still looking for better opportunity. I havent make up my mind. May Allah give me guidance to the best interest of my family.

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Berkampung di wad

Dah dkt 10 hari kami berkampung di hospital for iman final cycle of transplant. Chemo dah settle, infusion of stem cell pun dah sudah.. so skrg masih menunggu imun dan platelet dia kembali normal. As of today platelet dia 0.5 (normal 4.0) dan platelet 13 (normal 150).

As usual, we have to wait at least 2 weeks before everything goes back normal. Perkiraan kami before ramadhan bermula iman boleh discaj, itupun kalau exactly 2 weeks dah baik. Memang berdoa dapat sambut ramadhan di rumah, dgn anak2,, sebagai sebuah family yg sempurna. Dah lama sgt rasanya kami berjauhan. Anak2 kat kampung pun asyik x sihat, ubat2 pun katanya dah habis.. perasaan rindu pada adik dan fahmi memang x boleh cerita.. rindu dgn keletah adik, dan fahmi jgn lar sampai putus susu ibu pulak ye. Ibu dah buat byk bekal kat spital nih..

Iman pun x mengamuk bile nak di beri injection, sbb saya dah janji bila ramadhan kita balik umah, kita boleh beli bunga api byk2.. nampaknya sangatlar berkesan.. dia x menangis langsung.. dia kata dia dah kuat sbb dia nak balik cepat.. rindu kat adik2,, nak main bunga api sama2 kat kampung. dan terus bergenang air mata dia.. dia jadi lebih sensitif sekarang nih, bukan sikit.. memang sgt sensitif.. bila kekadang dgr dia berdoa,, dia sembunyikan air mata dia,,  dia menyorok dia bawah selimut. Moga dia jadi anak yg lebih tabah.

Iman demam masa awal2 kemo tuh,, he is still on antibiotik,, plus doktor dah bagi satu ubat anti fungus.. satu botol tu harganya $4k.. utk elak jangkitan.. mak ai, mahal benor, alhamdulillah lar dia dah x demam.. bahaya gak kalau demam nih kan especially bile imun bdn dia zero.

Nih dia baru mengadu dgr ringing dkt telinga dia sblh kanan,, makin worse ke? x sabar nak suh dia buat hearing test. Tunggu apa kata doktor esok.

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Maid o maid

Dah kali ke-5 kami bertukar maid, 4 dari ke kemboja dan yg baru nih from indonesia. Semua x serasi dgn kami and anak2, yg last nih because dia ada masalah kesihatan.. but we only knew it until the very last day of sending my old maid back to indonesia.

Kami terpaksa menghantar budak2 ke kampung (di jaga oleh ksal - my eldest sister), luckily my mum and my other sister also live nearby, at least faris dan fahmi x rasa sangat ditinggalkan selama 3 minggu tanpa ibu dan ayah. We set our priority, iman is our priority. kadang ada jugak penah bibik lama cerita yg adik mengadu x ada orang jaga adik, x ada orang sayang adik.. memang kesian nak tinggalkan derang tapi what choice do we have.

I really trust my elder sister can take care of my kids, better than me i think, she single handedly managed her kids of 4 without any maid,  her kids are also obidient too. I think she is such an extraordinary person cos she really loves to help people, anybody especially her siblings, she is vocal and has lots of ideas, definitely someone to talk to if you're in trouble. I call ksal and apparently both of my kids are doing fine at her home. Fahmi cried at first but eventually he's ok. We had less to worry then.

So we are now back in the hospital, hope iman okay for this last cycle.

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MRI experience

Semalam iman ada MRI, this is his 5th. Biasa 4-5 hrs before the procedure, memang dia kena berpuasa,, since dia ada hearing test, eco and ecg prior to mri so the whole day his schedule was really occupied, he was not so cranky not being able to eat..

This time iman refused to take sedative, so we thought why not we try without it, lagipun the perious mri, sedatives given wasnt really work on him,, he couldnt sleep during the whole proces.

 (courtesy from sleepandneurology@blogspot.com)

Definitely he was uncomfortable of being alone inside the hole altho i was sitting besides him,  with that loud noise he become so scared, but still he didnt scream,, but i could see clearly his tears running.. i'm so lucky, he is such a strong boy,, he had the courage to be in that machine,  the machine which can identify the state of his brain and spine.. am i not grateful?? yes indeed i am so lucky to be given this very strong boy in my life, the boy chosen by Allah to have brain cancer.. Seeing him so afraid really breaks my heart cos i cant help him go through that process. I could only holds his legs, just to comfort him but it didnt help that much.

Through out the procedure, my heart keep pounding quickly anxious to know the outcome of the mri, Alhamdulillah everything seems ok, but we still need to wait for the actual result this monday of which he needs to be warded for his final cycle. Hope, really hope he wont feel so much pain for this last cycle.

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Breakdown

Last nite, I bring faris to meet doctor for a check up cos he keeps complaining of stomach pain.  The doctor said his tummy contained so many air, so the doctor gave him some med to reduce the pain.

Then the doctor asked how am I doing dealing with iman’s condition? How about my husband? I said my husband coping it very well compared to me.  It is very tough, but I am a lot better than during the earlier diagnosis.  The doctor said that I looked different, he can tell by looking at my face. I said this incident changed me.  He said I look calmer and stronger than before. This doctor is just like our family doctor. His clinic is located like 500 meter from our house. He knows all our family member including my maid.. hehe..

Now I become more cautious if my sons get sick. I have this feeling, anxiety that my other sons also having similar disease. All those worrying thoughts.  If only I can make it go away.  The doctor advises me to stop thinking negative, the worse thing in your life had already happened, life couldn’t get worse than that. He said I must be strong,, if my son can really deal with it, I as his guardian should be stronger, for his sake. He said brain cancer is not happen due to genetically reason. 

My tears finally breaks free, I said dealing with surrounding people who sometimes don’t really understand what we're dealing is the hardest part. It’s really tough..But I have to go through it. I told the doctor there were people who  told me that the radiotherapy will shrink his brain. How am I supposed to react to that? He’s my son, of course whatever I do is the best for him.  Getting the news that your son is having cancer from the doctor is our worst nightmare , but yet people dare to speak that harsh word to me. Just to drag us futher down. Of course I didn’t response to that, i silent my tongue cos I don’t want to hurt anyone.  Thank s doctor cos you willing to hear my voice this very nite.

I ignored negatives thoughts from others, they can say what they want but it won’t shakes me,, not now. I have to pick and choose friends even my own relatives who really do understand,  somehow  I really not in the mood to meet people cos I don’t want to be influenced negatively by them.  For my friends and relatives who really understand, thank you so much..  I certainly love u all.

By the way Iman was discharged exactly 14 days after transplant of stem cell. It’s quite fast. Which is good cos I really miss adik and fahmi. Iman is doing really well the doctor said.  Ibu and everyone else who loves iman will continue our prayers for your full recovery ok.

As for me I’m waiting for a good news to pop out, insyaallah.. Hope everything on my side, Amin.

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Parents support group

When dealing with cancer, it is really important we mingle around with people who are also facing same diseases. We can share our experiences, our thought. Real life information compared to information available from google. In chemo day care SDMC for instance is a great place to meet people with the cancer related ailment. How the diseases started, what treatment they are currently on. Somehow it can reduce our anxiety and be prepared with the side effect of the chemo treatment either temporarily / permanent. At least we know that we are not alone fighting.

The other day, SDMC arrange parents support group and invited few parents with various types of cancer from leukimia to other solid tumour.  I joined cos i want to share my feelings.  I cried when i heard their side of stories. Everybody have their tough time.

There were breakdown moments, one of the parent admitted that she almost commit suicide, cos she cant bare the fact that his son is having cancer, but eventually she came to her senses that she needs to be strong for her son.

We shares knowledge on how it started, what challenges we faced. Each chemo med has its own side effect, extreme side up to having diabetes and have to be dependant on insulin, having LP is like taking normal jab.. it's really tough..

Among the particpants includes 2 parents whose childs already completed the course of treatment. They brought their childs along. They look perfectly healthy and brilliant too.. Exactly like iman, except that iman is skinny now.. They said that it is really essential that we, as a parent to be strong for our kids, ignore all negative thoughts and focus on the kids, to support them, be with them. I seriously want to be like them, to be strong,, may Allah give strength to me to face this challenge.

They said once it all over, when they look back on what they had gone through, they smile cos they survive the hard time and every moment was a very sweet memory. Turning bad experience into sweet memory would be very challenging. I will and i must make this journey as sweet as possible, insyaallah.

2 hrs sessions seems not enough. We ended the session by sharing our positive thought so it can boost everyones' spirit. hope they can organise such program soon.

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