His First Chemo Cycle

On 21st June 2013, the hospital called. Doctor said Aisy kena admit for chemo this coming Monday..huh??? biar betul.. katanya results BMA and biopsy excision tuh will only come in another two weeks.. nape tiba2 kena buat chemo ni? Ishhh.. perlu ke?? I memang sangat risau time tuh.. then i asked why tetiba nak kena buat chemo ni? U’ve never mention nak start chemo any time soon pun.. then the doctor said they studied Aisy punya ct scan results (ct scan yg buat kat Pjaya hosp awal bulan tuh) and diaorg tengok benda tuh agak entensive, agak besar..so kena start chemo asap.. lah pulak.. betul ke? Hati ni memang rasa tak senang..sebab macam out of a sudden sangat.. tak puas hati.. so i said i will call back soon sebab nak kena inform hubby la kan.. ok so then i call la hubby, dia pun terkejut nape tetiba nak kena start chemo.. pelik sangat.. sebab masa kitaorg kat hospital tuh, diaorg takde mention pasal chemo plak.. lagi2 bila specialist tuh mention aisy mungkin stage 4s kan.. stage 4s kan takyah chemo or surgery ape2 pun.. cuma observe jer..

So hubby said..why don’t i call my cousin who is a doctor in Ireland and ask her about it.. so Alhamdulillah we managed to call her through viber.. so we asked her one thousand and one questions lah.. since she is quite familiar with cancer and its treatments, she gave us the advice to go through with it.. because dia kata.. chemo tuh tak murah.. and lagi2 govt hospital takkan nak buat treatment sebarangan.. plus doctor takkan suruh buat kalau benda tuh tak penting.. since doctor tadi cakap benda tuh quite extensive, that’s why diaorg suruh start asap... haihhh.. lega sikit lah after consulted my dear cousin.. ok, since we already get the advice.. hati nih tenang la skit.. so combine kan dengan solat istiqarah.. we made the decision to go through with it.. so i call balik IP (institute Pediatrik), and told them kitaorg masuk rabu.. sebab isnin n selasa tuh nak masuk office and buat paperwork bagai untuk amik cuti.. and also to explain to our bosses lah..

So as days go by.. rabu pun datang.. 26 June 2013.. pagi amik darah, masuk line dekat chemoport.. then petang pukul 6pm, start pasang chemo.. chemo nih macam masuk air caranya.. set kan dekat line yang ke chemo port tuh, then tunggu lah sampai ubat chemo tuh abis.. aisy punya treatment is dua jenis drugs.. etoposide and carboplatin.. eto dalam 4 jam, then sambung carbo sejam.. so treatment dia sehari is 5-6 jam.. and dalam satu cycle.. aisy kena buat chemo tiga hari berturut2.. so, 1 cycle is 3 days in a row, 5-6hours per day..

Doctor explained that aisy will be doing two cycles and then buat scan untuk tengok progress.. then they will decide whether to do surgery or sambung lagi chemo.. and doctor told us aisy is actually stage 3 minimum.. for now..hmm.. ok.. stage 3.. wow.. kita ingat dapat discover awal2 mcm ni, dia maybe stage 1,2, or 4s.. rupa2nya dah stage 3 minimum.. ok takpe.. control sebak.. sebab macam2 nak tanya specialist nih.. sebab yang dtg jumpa kitaorg is the head of onco specialist kat situ.. so banyak lah soalan yg i dah sediakan and key in dalam phone untuk tanya..huhu.. we as parents mmg kena be fully aware of types of treatments, risk factors and all that.. we HAVE to do as much homework as possible about penyakit anak kita.. because we need to understand nape doctor buat itu ini..and we can also suggest to doctors pasal treatment n penjagaan anak kita melalui research kita..my advice to all parents, pls pls pls jgn just depend on hospitals and doctors untuk treat anak kita ikut kata diaorg jer.. we have a say and we must know what we are saying! Research research research.. tanya orang sana sini.. and we can also know what to avoid and what to get for supplements and all that.. jangan tunggu doctor or nurse bagitau sebab kadang2 diaorg tak ingat pun nak inform kita.. seriously.. it is our job to know as much as possible for the sake and betterment of our children.. wahh lecture plak.. ok2.. but im really serious about this.. parents KENA amik tahu!..

So anyway.. doctor said aisy stage 3 minimum for now (means tak confirm lagi, it could be worse), risk group intermediate-high risk.. okay.. saya makin cuak.. hmm okay.. then doctor said tumour aisy sangat besar and ianya dah infiltrate, dah masuk ke dalam spine canal dia.. Allahuakhbar.. muka rasa kebas sangat bila dengar doctor punya findings.. primary tumour is at the nerve tissue beside the spine and above the kidney.. possibility of surgery will be advised by the head of surgeon (Datuk) after the MRI scan.. so i tanya about side effects.. doctor said, usually below 1 yrs old, babies tak tunjuk sangat side effects except hair loss and burned skin.. dari segi long term.. possible chance utk cancer tuh datang balik untuk case neuroblastoma is only 1% tapi ini untuk patients yg kat hkl la.. secara worldwide, they don’t know lah..  haihhh... letih hati.. letih minda.. dengar semua benda2 ni about anak kita.. rasa macam nak lari je masa ni.. bawak aisy lari jauh2... but.. reality bites.. nak tak nak.. we have to go through it.. we have to save our baby..

Ok so on that day, kul 6ptg, start chemo until 12am.. pastuh sambung masuk air minimum 8 jam.. first day so far Alhamdulillah... second day pun sama.. syukur.. and second day ni doctor bgtau yang Bone marrow dia clear.. takde ape2..alhamdulillah.. tapi dia punya lump yang buat biopsy excision last week tuh turns out to be neuroblastoma.. alamak.. okay.. maksudnya cancer dia dah spread la kan.. terduduk kejap.. ok, xpelah sebab benda tuh pun dah buang kan.. hopefully takde kat tempat2 lain..

Then third day, tetiba bila family ramai datang visit.. tetiba aisy nangis2 tak henti2.. asyik rengek2 jer.. aduhhh knape plak ni... panas sangat ke? So since aisy pun dah tak selesa, kita advice sume visitors balik lah kan.. sebab nak aisy rest.. then suddenly badan panas gila..terus bukak baju dia semua.. then tuam dengan air.. 

alahai kenapa anak ibu ni... tiba2 jer demam.. then nurse check temperature.. panas.. dah 38degrees.. pastuh 39.. pastuh 39.5.. Ya Allah selamatkanlah anak aku... aisy dah tak bermaya.. tak nak minum..tak nak makan.. takkan dia demam sebab ramai visitors? memang ade org advice supaya jangan ramai2 visitor masa chemo, sebab immune system fragile..tapi usually immune system fragile bila seminggu dua lepas chemo.. ni baru tiga hari, takkan dah kacau immune system dia? Hadoiii.. tak tau nak fikir ape dah.. terus bgtau semua, jgn visit dah lah kecuali aisy punya grandparents jer..

So kena lah pindah ke bilik demam.. kat ward ni ade tiga bilik demam.. bilik 5,6 and 7..so masuk bilik 6.. ingatkan Sabtu dah boleh balik..kena la tunda.. ok xpe, doctor kata kalau takde infection kat darah, aisy boleh balik sebab demam biase jelah.. tp kalau ade bacteria dlm darah.. memang tambah seminggu lah percutian di situ.. huhuh.. so kita pun doa2 so that takde infection,.. tup tup doctor bgtau darah dia infected ... Allahuakhbar.. padanlah anak aku lesu semacam jer..

Bila specialist dtg, dia pelik kenape cepat sangat infected nih.. selalunya lepas seminggu dua.. so diaorg pun bagi la antibiotic course untuk seminggu.. so i whatsapp cousin i yg kat Ireland tuh..bgtau dia pasal aisy demam sume.. then dia suruh check chemoport aisy, takut ade infection.. eh ye ke? Boleh jadi ke sebab tuh? Ok ok takpe..nanti i bgtau kat doctor.. then i told this one doctor.. i nak tengok aisy punya chemoport sebab takut infection.. chemoport tuh ditampal dengan gauze bila letak line so takkan nampak ape2 yg jadi kat situ.. so then doctor kata tunggu rabu sebab diaorg slalu tukar dressing once a week.. i ckp oh no no.. i nak buat skarang jugak.. i btul2 insist.. biarlah doctor tuh tak suka i pun..huhuh..yg penting kesihatan anak i.. ok, doctor kata, esok pagi kita buat since ni pun dah malam kan.. kalau ape2, lagi senang bila spelcialist ade.. ok esok pagi.. fine.. i boleh tunggu..

so esoknya.. pagi2 i dah tanya bila nak bukak tgk.. ye, kita as parents ade hak yer.. like i said before, kita kena amik tau... aisy punya temperature time tuh dah sampai 40 degrees... Dgn muntahnya lagi..memang i berserah pada Tuhan jelah.. xleh nak buat ape.. cuma i boleh usahakan yg terbaik jer untuk aisy.. so pagi tuh, diaorg bukak, tgk macam merah skit tapi takde ape2.. tetiba i notice ade macam lendir kuning kat gauze tuh.. lendir tuh mcm dah keras lah.. but i tunjuk la doctor tuh.. then bila doctor tekan port dia.. memang terkeluar nanah.. haaaaaaaaa kan aku dah kata!! So doctor ape lagi, picit2 kasi semua keluar, memang melalak la anak i.. nanah yg dikeluarkan is about 10cc.. sangat banyak okayyyy.. rupa2nya sebab tuh lah dia demam..

so infection tuh salah siapa? Atau takleh nak salahkan sesiapa? Bcoz benda tuh subjective.. mungkin equipment tak bersih masa diaorg pasang line pada hari pertama tuh? Atau nurse and doctor yg tak bersih? Atau mungkin badan aisy sensitive untuk terima foreign objects? Or bacteria badan aisy reacted badly terhadap needle tuh? Macam2 lah possibility.. i malaslah nak fikir panjang2 pasal ni.. so i updated cousin i bgtau yg mmg chemoport dia infected. So she said kena immediately remove.. so i tanya la specialist kat situ, bila nak remove.. dia kata, oh, x semestinya kena remove.. kalau kita boleh save benda tuh, kita save la.. sebabtaknak banyak kali buat operation chemoport insertion tuh.. tapi kena tunggu surgeon dtg tgk dulu..hmm ok... i pun bgtau cousin i.. cousin i mmg dgn sungguh2 suruh remove benda tuh sebab kalau tak remove.. bacteria tuh maybe still akan ade kat situ.. and if aisy punya immune system tetiba low.. and the bacteria starts seeding.. it can be really2 bad for aisy.. Ya Allah macam mana boleh jadi macam ni... kesiannyer aisy..

panjang cerita entry nih..nak buat camne.. his first chemo.. 11 hari kita kat hospital.. so Panjang lah ceritanya.. sabar yer.. hehehe.. so anyway, esoknya Datuk dtg tgk aisy.. he said, memang kena remove lah bcoz dah infected.. Alhamdulillah.. nasib baik Datuk ni on the same page as us.. so aisy is scheduled untuk chemoport removal surgery on Thursday.. lega hati rasa.. nanti bila nak buat next cycle, baru surgeon akan masukkan chemoport baru untuk aisy.. which is in two weeks time.. so lepas removal tuh, Alhamdulillah aisy dah boleh senyum.. boleh pusingkan badan.. boleh merangkak sikit2.. (gambar bawah is lepas kuar dari dewan bedah) syukur Alhamdulillah.. thanks to my dear cousin and the smart Datuk doctor..so hari Sabtu (6th july), barulah dapatdischarge.. but aisy still kena complete dia punya antiobiotic kat rumah for another five days.. selesailah satu chapter.. hadoii...dugaan2.. harap2 takdelah jadi macam nie untuk next chemo cycle..

so next appointment, Aisy will be doing a bone scan on 8th july, MRI on 9th july (ni utk dijadikan mcm base line utk compare dengan MRI lepas 2nd cycle).. then masuk balik hkl untuk chemoport insertion and 2nd cycle of chemo on 17th july.. so our lives are spent more in the hospital than at home.. need to get used to it lah.. takpelah.. anak punya pasal.. yg penting..dia sihat.. ok, c u guys in the next entry..