Chemoport removal and re-insertion

Salaam all.. sorry ive been quite busy handling life as it comes.. okay, so to continue the last entry.. Alhamdulillah the next day (29 October 2013) aisy recovered fully from the general anaesthetic (GA)..

Datuk came to visit and said that aisy is to do an ultrasound today because they want to see his jugular veins at his neck for chemoport re-insertion.. it turns out diaorg nak remove chemoport yang dah rosak ni and insert a new one..hmm... nape nak kena insert new one since kita tak tau pun result ct scan dia lagi.. what if he doesn’t need anymore chemo after this? I tanya Datuk, but he gave an answer yang tak clear tapi indicate that mcm dia dah tgk the ct scan result, so looks like aisy needs more chemo lah.. but Datuk tak discuss lebih dgn i because itu kena tunggu oncology yang explain.. hmm okay.. if he says so, takpelah.. sebab i pun taknak aisy asyik keluar masuk surgery jer. So sekali jalan jelah.. buang chemo port lama n pasang baru at the same time..

Tapi ape2 pun kena buat ultrasound dulu sebab nak tengok saluran darah dia okay ke tidak.. diaorg nak tau nak pasang port baru tuh kat mana..kiri or kanan..

Tunggu punya tunggu.. dah tengah hari..hmmm..bila nak buat ultrasound ni? 

Tunggu...tungguu... tunggu... dah kul 3pm.. hadoii.. nie dah kali ke berapa i tanya nurse and doctor bila diaorg nak panggil aisy to do ultrasound.. so they checked with the people kat tempat tuh, they said they have received the request, Cuma kena turn jer since ramai yang nak scan harituh.. oklahh.. my only concern is that tempat scan tuh tutup kul 5pm..and its already 430pm.. malas la nak tunda benda tuh and do nothing the whole day... 445pm barulahh diaorg panggil.. fuhh..nasib baik.. so we went.. aisy mcm biasa lah..meronta2 nangis bila kena restrain.. nangis sampai tertido..sian dia.. so diaorg tengok, it looks like the right side mcm tak brape elok sebab damaged by the previous chemoport kat situ dulu.. so they said maybe letak port baru kat tempat sama (which is on the left chest) tapi tube maybe masuk melalui area kat pelvis dia.. hahh??? Melalui pelvis?? Biar betul?? Messed up betul saluran darah anak aku? Ya Allah..permudahkanlah...

So the ultrasound was done..tunggu ajelah esok untuk surgery.. aisy surgery pukul 3pm.. wahh tak pernah2 dia surgery petang..selama ni dia mesti first case or second case..pagi2 dah buat.. but now that dia dah older.. jadi la case kelima atau keenam..shian dia..so kena puasa start pukul 9am.. oh and he had fever so his surgery might be cancelled.. aduhaii i really hope not.. so i mandikan dia n all that to bring his temperature down..Datuk kata if by afternoon dia still fever, then we cancel the surgery.. no no no.. jgnlah tunda2..tuam lah pale dia..ketiak dia..blakang dia.. and left him naked biar sejuk skit.. then bila tgh hari, nurse check temperature.. Alhamdulillah.. 37.2.. yeayy.. lega sangat aisy dah tak demam n can proceed with surgery..

Hmm bila tgh hari dah mula lapar.. nangis nangis nangis...sampai tertidur.. tak larat dah.. alahai anak ibu..

Then around 1pm.. nurse suruh packing2 n siap2 untuk pegi operation theatre.. now the OT kat paediatric is under renovation, so kena guna OT kat main building.. kenalah naik ambulance to go there.. then about 145pm..kitaorg sampai the main building.. suka aisy naik ambulance heheh.. then i had to wear all the surgery clothing n what not.. pastuh tunggu at the waiting area.. aisy ngamuk2..nak tido.. nak susu.. alahai..finally berjaya to calm him down and bagi dia tido.. after sejam tunggu.. around 245pm baru diaorg panggil masuk.. okay.. masa sudah time.. they put him down..i kissed him goodbye and left the OT.. Ya Allah selamatkanlah anak aku.. permudahkanlah segala urusan..

4.40pm.. Mama aisy??? Eh..dah siap ke? Alhamdulillah.. i tunggu sampai tertidur kat waiting area.. so i rushed to go and see him.. Alhamdulillah anak ibu okay.. and thank God..they managed to insert port n tube baru kat tempat yg sama (kiri) and takyah nak masuk tube kat pelvic and all that.. syukur Ya Allah..

So i carried him in my arms and waited for the ambulance to come.. his tok mama tengah tunggu kat ward.. around 5pm plus ambulance datang..

Sampai ward, jumpa my mom.. and aisy main kejap dgn tok mama dia n went to sleep...still drowsy from the GA..

Doctor came n said if everything is okay..esok boleh balik but have to see the oncology doctor first before getting discharged..

Oh yeah..this time around ayah aisy cannot take turn to jaga aisy at hospital coz he has got a new job.. so tak boleh la nak cuti2 lagi.. so i took charge lah hehe.. then suddenly i demam pulak.. badan seram sejuk.. so mintak tolong my sis in law to stay over jaga aisy for that nite.

The next morning, i went to the hospital..then my sis in law left for her class.. Alhamdulillah aisy okay..but his fever datang balik.. kesian dia..so since takleh mandi coz baru surgery.. asyik lap badan jelah.. then around 5pm.. agak lambat lah.. oncology doctor pun dtg..and my mom pun dah datang..he said just come for aisy punya appointment with onco clinic lah seperti yang dah plan tuh.. his appointment is on 20th November 2013.. so oklah.. since demam aisy pun dah surut, boleh balik dulu.... pastuh tunggu punya tunggu.. dah kul 7pm nih.. nape nurse tak bagi lagi discharge note semua? Then tanya diaorg..katanya diaorg tak dpt instruction pun pasal nak discharge kan kitaorg.. aikkk.. bukan datuk dah kata ke? Alahaiii.. medical officer tak habaq lah tuh.. and now kena tunggu doctor yg on call untuk dtg and discharge us..

 tunggu punya tunggu.. Maid i pun dah bohsan tahap gaban tunggu heheheh.. doctor came around 9pm plus.. mak aihh lambatnya.. so we left almost 10pm..balik umah..where ayah aisy is waiting..so aisy dapatlah lepas rindu to his ayah.. eventho ayahnyer datang everynite after work, tak sempat nak play pun sebab aisy is usually knocked out cold.. and so.. all is well insyaallah..tunggulah 20th November 2013..

By the way, 3rd november ni is aisy's first bday.. So kitaorg dah plan dah celebrate on the 2nd nov dah lama dah but suddenly when this happened, kena put on hold dulu.. So since on 31st oct aisy dah discharge, boleh la continue with d plan , alhamdulillah.. 

Emergency

Hmm.. Ape la nasib anakku.. Ayah aisy dapat rasa sesuatu menyucuk keluar dari dada dia, near his chemoport.. hmm suspect mcm sumthing wrong je ni.. thats why masa hari ct scan tuh, doctor xleh nak flush chemoport dia.. so check chemoport dia semlm kat onco ward.. Doctor suruh buat xray.. Skejap je xray.. Then tgk results, hmm mmg ramalanku benar belaka.. Tube yg sambung kat chemoport tuh dah putus.. Team surgical datang tgk, they said tube tu dah masuk dlm saluran darah.. 

So here we r today, admitted at the surgical ward.. Tgh tunggu turn to do immediate surgery.. Surgeon kata kena buat before the tube goes to his heart an into his lungs..Ya Allah.. U constantly remind me... 

However, surgeon takleh buat sbb tube tuh dah masuk dalam sangat. Hence, intervention radiologist will take over and do the procedure.. 

Its 12.50pm now.. Aisy last susu at 6.00am..nangis sampai tertido.. Lapar.. Haihhh.. Kesian anak ibu.. 

Thats all for now.. Will update once he has finished surgery.. Please pray for him.. Thank u..

Aisy's Assessment

21st October 2013... kitaorg bawak Aisy untuk ct scan... as mentioned in my previous entry.. ini adalah untuk assess progress cancer cells dia.. tapi hari ni scan jer.. results cuma boleh tahu 20th November 2013.. lambat nawww.. bila dah tau results..then only kita tau whether aisy dah cancer-free or kena continue treatment.. readers, tolong lah kami and doakan supaya Aisy cancer-free and no more treatments for the rest of his life... tak sanggup dah nak tengok Aisy membesar kat hospital..

After the procedure... Shian dia penat sangat.. Coz we also flush his chemoport but there was some problem with it.. So kena cucuk brulang ulang kali.. Nangis sampai tarik.. Sian anak ibu.. 

This coming sunday have to bring him back to HKL to check his chemoport.. Haihhh.. Hopefully all is well.. 

Aisy’s 2nd cycle of chemo & chemoport re-insertion

17 July 2013..it was a wednesday.. masa tuh dah start bulan Ramadhan.. so kena la puasa kat hospital.. we got ourselves to IP in the afternoon.. registered and checked in to the onco ward as usual.. so pasang line..amik darah.. then the whole day takde procedure except for the anaesthesiologist datang and asked us to sign the release forms etc.. so aisy is set for tomorrow morning at 9am for chemoport re-insertion..harituh chemoport dia on the right.. tomorrow they will insert belah kiri pulak.. near his heart.. insyaallah hopefully everything will be fine..

So keesokan harinya, as usual, aisy kena puasa.. and we brought him to the dewan bedah.. about 3 hours later.. all is done.. Alhamdulillah all went well.. he was brought to the ward for recovery.. dah sedar.. dah boleh minum susu.. dah boleh main2.. they will start his chemo at 6pm on that day itself.. haihh risau sangat kalau dia demam ke ape .. tapi kali ni confident sikit sebab line yang diaorg pasang kat chemoport tuh diaorg buat dalam operation theatre (OT).. so OT memang bersih n sterile kan.. so i rasa confident skit lah.. cuma taktau aisy punya reaction towards chemo kali ni macam mane pulak.. chemo ni..mmg u xleh expect what’s gonna happen.. we just try our best to overcome jer.. maybe boleh prevent jugak kalau dah buat research..

So 1st day chemo..alhamdulillah okay.. 2nd day chemo badan panas skit tapi bila tuam2 skit.. dia okay.. 3rd day pun Alhamdulillah syukur sgt2 dia active and ceria!! Hubby n i sangat2 happy sebab Aisy sihat and takyah prolong stay kat hospital sebab tak larat nak berpuasa kat hospital..sayu pun ade gak..sahur nasi bungkus ade penderma yg bagi tiap2 hari.. berbuka dgn makanan hospital share dua orang dgn hubby huhu.. By the way, on the day before we got discharged, ade visitors dtg bearing gifts and balloons.. aisy was so excited with the balloons.. heheh seronok tgk dia engross main dgn balloons tuh.. hehehe... so hari ahad we got discharged!! Yiippeee..!! but before balik.. we were given a date for Aisy to do his ct scan on 29 July 2013.. hmm.. this scan will be the evaluation of his progress of reaction towards the chemo.. hmm sangat debar.. memang doa supaya benda tuh hilang dengan miracle nyer.. huhu.. cuak cuak cuak...

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.. 

 

The Detection

So you see.. the detection was by chance.. we were lucky enough to have followed our instincts.. kalau nak tunggu symptoms, memang takde lah sebab aisy tak tunjuk ape2 symptoms.. yang demam tuh biaselah baby demam, nak membesar kan? .. so we were blessed with the early detection.. or so we thought..

Monday morning, 10th June 2013, dah tercangak depan Institut Pediatrik, HKL.. we were referred to the surgical ward.. for those yg dah biasa dgn IP ni..mesti dah tau ward mane kan.. so pergi la register n whatnot.. ingatkan jumpa doctor jer..rupanya kena admitted terus..hmm ok, xpe.. nasib baik barang2 semua dah siap dlm kete.. so we were given a room at the back sebab kat depan semua dah penuh.. it is an open ward with no air conditioning, only ceiling fans.. but they provided extra standing fans for each bed, so it was not so bad.. so as we walked through the ward, memang sgt sedih sebab seeing small babies with all the wires around their bodies.. balut sana balut sini.. maklumlah, surgical ward kan.. so semua yg ade kt situ mmg akan atau sudah pun melalui surgery.. so we thought..oh, aisy will be going through surgery lah kot anytime soon..to get rid of the tumour..

Ok, dah sampai the room where we were given, hmm.. bilik berdua, aircond ade, memang comfy.. Alhamdulillah..rezeki untuk beginners hehehe.. yelah, for me, i mmg tak biase staying at govt hospital.. this is actually my first time.. itu pun not for me, but for my son.. hmm okay.. my hubby expert dah bab2 hosp govt nie.. so dia explain la kat i and taught me how to prepare myself with the service and procedure n whatnot... ok ok.. i boleh handle.. so i pun tekan la button kat dinding tuh, konon2 nak panggil missy.. rupa2nya benda tuh tak berzaman tak berfungsi.. kena panggil missy secara manual yer.. tapi kitaorg bilik paling hujung skali.. jauh dari counter missy.. hmm.. takpelah, tunggu jelah bila2 missy datang..

So we waited for the surgeon to come and check on us, also to review the ct scan films that we brought with us from Pjaya hosp. Lama jugak la nak tunggu, i think afternoon kot baru surgeon dtg.. then he came.. i saw his tag.. he was the head of surgeon..hes a Datuk..hmm ok.. nervous skejap.. then he reviewed the films and asked us about the findings in Pjaya hosp.. so i told him lah what the docs told us.. i also asked if it is possible for the mass to be just his tahi keras je?? He said a simple “no”..then he said.. “They could have done a better job with the scan.. hmm.. in my experience, i’m guessing it is neuroblastoma (cancer saraf)and not Wilm’s tumour but we will do a biopsy to actually know what it is..”..”but before that, we will do an ultrasound just to be sure of the size and location.” In my heart, i was actually hoping for it to be Wilm’s tumour because after Pjaya said it could be either or, i did my searching on the net and i think Wilm’s tumour is less complicated. But when he said it looks like neuroblastoma.. my heart shrank a lil bit.. 

Next day.. we did an ultrasound... it was quite long because the sonographers macam tak percaya jer bila tengok ultrasound tumour dia.. coz the tumour is like all over the place.. from one end to the other.. guess what? I was still hoping that it’s just his stool yang keras yg dia tak berry hahahah.. denial..i know.. but any mothers would have still hoped for the same..so i tanya the sonographer.. u rasa boleh jadi tak benda ni tahi keras dia je? Hahahahah he chuckled and said.. most likely tak.. ok fine.. i kena terima la kan..

After ultrasound sume dah selesai.. petang tuh, a doctor came and told us that they will be doing a biopsy and chemoport insertion for aisy the next day.. biopsy tuh oklah.. but chemoport insertion??? What on earth is that.. i know it’s got something to do with chemo tapi ape benda tuh? Then she explained that it is a port where they will tanam under patient punya skin.. so that bila buat chemotherapy, cucuk line kat situ sebab chemo takleh guna peripheral line (line kat tangan or kaki).. ohhhh i see.. but why nak letak cepat sangat? Kita tak tau pun aisy perlukan chemo ke tidak.. abihtuh, kalau dah buat biopsy nanti, tetiba aisy takyah buat chemo.. nak buang balik ke benda tuh? Bukannya benda kecik sebab it needs surgery to do it kan.. so i still tak puas hati kenape nak kena letak chemoport tuh cepat sangat.. nape taknak tunggu results dulu? Then doctor said.. because Datuk thinks its neuroblastoma.. so most probably it needs chemo.. i macam.. hebat sangat ke Datuk ni sampai boleh diagnose tanpa biopsy? Hmm.. tapi doctor tuh mmg mcm convinced la dgn sangkaan Datuk..ok.. so hubby n i pun terpaksa terima la dgn hati yg open..petang skit, anaesthesiologist pun datang.. dia explain pasal allergy terhadap general anaesthetic (GA) n all that.. sign release form etc..

So Wednesday is here.. sudah tiba masa untuk biopsy and chemoport insertion procedure.. i risau more on the GA reaction sebab it’s the first time for Aisy kan.. macam2 boleh jadi kalau ade bad allergic towards GA tau.. so mmg teramat risau..then about 9am.. we were called to the dewan bedah.. nervous.. cuak.. debor.. gigil.. first time kottt... so bila dah sampai, Medical Officer (MO) tuh tanya sape yg nak masuk.. so hubby and i looked at each other and we decided i yang masuk.. so pakai all the necessary things.. and bawak my baby masuk ke Operation Theatre (OT).. i kissed him nonstop while walking ke OT.. Then MO and anaes suruh i letak aisy on the warm thingy atas meja operation tuh.. so i did.. then they inserted the GA through his line kat tangan, then mata aisy terus naik ke atas.. Ya Allah.. detik yang sangat menakutkan dan merisaukan aku.. pastuh MO suruh i kiss him and leave the OT.. so i kissed him and told him that ibu and ayah will be waiting for him outside.. as i left.. i couldn’t hold my tears.. memang hancur hati bila keluar dari tempat tuh.. i masih lagi boleh rasa kepiluan yang genggam hati i at that moment.. i ran straight to hubby and he hugged me, cuba tenangkan hati i.. i nangis dalam nak dekat sejam kot.. pastuh bila dah reda.. try to doa dlm diam.. sambil sembang2 kosong with hubby just to get our minds off the anxiousness.

It is now 11.30am.. hmm lamanya.. .......12.30pm........ susah ke nak letak chemoport tuh?.........1.30pm... aihh, biar betul.. lamanya... 2.00pm.... “Aisy Ezkandar!”... nurse panggil from the Dewan Bedah.. berlari lintang pukang ibu n ayah ni heheheh.. then i pakai balik benda2 tuh sume and went in.. alahai..sedihnya tengok my baby boy tergelepek kat atas katil kat tempat recovery tuh.. merengek2 sebab lapar.. yelah.. puasa since 3am.. skang dah 2pm.. baby.. mestilah nangis.. so i held him..takut2 sangat sebab takut terpegang tempat yg diaorg buat surgery tuh.. i held him.. calm him down.. kissed him puas2.. Alhamdulillah.. anak ibu okay.. after about 15mins holding him, i switched places with my hubby.. to let him have the chance to see his son.. i know he doesn’t show that he is worried tahap gaban but deep inside.. i tau dia risau.. so i waited outside.. then about another 15mins after that, Aisy was brought back to the ward.. doctor said bagi air je dulu.. bagi sikit.. to see if he muntah or not.. i just terus gave him milk about 3oz.. then tengok dia okay jer.. i gave him another 3oz.. syukur sangat takde ape allergy or side effects after the minor surgery..the day ended well with our family visiting Aisy.. he was happy..

Thursday.. Datuk came.. and told us we could go home!!.. yiippeee.. bestnyer.. he will inform us of the results next week.. and tengoklah macam mane nanti.. ok.. so ape lagi.. packing2 ..vrroooommmm...pulanggg...