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.. 

Chemoport Catheter Removal

Today aisy just underwent the procedure to remove the catheter of his chemoport yg tercabut tuh.. 

The specialist says it usually takes 30mins to 1 hour but aisy went in at 2.30pm and came out from the room at 4.45pm.. The specialist apologised to me n hubby and showed us the whole process of the procedure taken from xray images.. Dia tunjuk that dia cucuk sana cucuk sini cucuk sana n cucuk sini baru dapat the catheter tube.. So aisy ade some minor internal bleeding bcoz of that.. Im juz glad its over and that the tube didnt reach his heart.. And the doctor was so nice.. He said, "im so happy that i could help ur child today".. Aww.. How sweet.. N he thanked us instead of kitaorg yg berterima kasih pada dia.. 

So then aisy was brought back to the ward by an ambulance.. Surprisingly he was still high after 4hours procedure tuh finish.. Usually lepas 30mins nap dia dah ok dah.. But this time, he vomitted his milk and he slept for so long.. I am quite worried.. Is is his age factor or sbb terlebih dose of general anaesthetic?? Hmm actually as im writing this, he is still sleeping.. He woke up at 8pm juz now for milk and finished 6oz of milk n didnt vomit.. Thank God.. Hopefully he will fully recover tomorrow.. Surgeon has some plans for him tomorrow.. Still dunno what it is.. So, till we meet again.. 

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 Raya Aidiladha

Someone was really happy n excited to have many relatives visiting during aidiladha.. He was so excited that he forgot to sleep hahahaha... So far alhamdulillah aisy is doing well n great.. Despite having d flu and cough a week after discharge harituh.. But now after dah makan antibiotic for about a week.. Hes much better... So next week on 21st october would be his ct scan appointment.. Hopefully all goes well.. I pray everyday for him to be cancer-free for d rest of his life.. No more chemo.. No more treatments..may God show him mercy.. 

So anyway.. Here are some pics during aidiladha.. 

Last Chemo Cycle for the First Protocol

26th September 2013.. aisy admitted for 4th cycle.. tuh yg busy tuh, sbb bwk aisy untuk chemo.. huhu..so, doctor kata ni last cycle untuk first protocol dia.. after this, nak kena buat ct scan, nak tgk kalau cell2 tuh dah clear atau masih ade.. kalau ade lagi (naudzubillah)..kena la sambung dua cycle lagi tapi dengan chemo drugs yang lain daripada yg biase nie.. hmm.. risau jugak dgr..  tapi kalau cell cancer dah takde (amin).. Aisy Ezkandar cancer free!! (amin).. insyaallah.. doa doa doa doa doa doa....

So routine seperti biasa.. masuk line kat chemo port.. first day aisy okay lagi.. tapi badan panas sikit.. temperature tak kurang dari 37.0.. mesti 37.0 ke atas.. risaunya kalau dia demam.. takut kena infection ke ape.. plus kali ni dia lain sikit.. mungkin sebab dia dah nak umur setahun kan.. one more month to go.. so usually doctor kata side effects on children below one yrs old tak seberapa sgt compared dgn one year old ke atas.. so maybe bcoz lagi sebulan aisy will be one year old..kelakuan dia mmg lain.. dia jadi macam lagi aggressive.. i mmg jadi punching bag dial ah.. dia hantuk pale dia kat muka i..dia cakar i.. tampar i.. tarik rambut i.. which he usually doesn’t do lah.. so mmg this has been warned before.. patients going through chemo can sometimes act differently or badly.. mula2 mmg i upset lah tgk dia mcm ni.. tapi lama2 pasrah jelah.. nak marah pun takde guna.. budak lagi..

He also wakes up early in the morning and doesn’t sleep sampailah petang..bangun kul 530am.. petang baru nak tido..itu pun tido 30minutes jer.. hadoiii..i lah yg pening..huhuh..

And this time.. dua kali line putus.. tapi nasib baik line drip jer.. haihh.. also since i dah complain to doctor about aisy punya rashes after chemo.. doctor prescribe aisy an allergy medicine before start every chemo.. and Alhamdulillah.. after dah habis chemo.. allergy dia takde..and it helps him sleep.. so it is so much better for him to sleep through chemo sbb dia takkan gerak banyak, takut line putus masa chemo kan.. so sgt la lega..

So allergy takde...cuma dia kena gigit nyamuk on the last night, so reaction badan dia towards the gigitan tuh is not good.. so the benjot gigitan nyamuk tuh evolve to be something nastier.. slalu bila kena gigit nyamuk.. benjot n merah je kan... nih dia akan mula2 benjot n merah.. pastuh benjot jadi lagi besar.. and then the benjot akan macam ade air.. and now jadi small biji2 and merah... doctor pernah bagi cream fobian to put on these thingys..but since its quite near to his eyes.. i risau dia gosok2 and masuk mata pulak.. so i just put minyak biase jer..n hope it will clear away.. lupa plak nak amik gambar benda tuh..

Alhamdulillah after three days chemo selesai... sunday morning.. cabut line.. and pulang!! Doctor gave us the date 21st October 2013 for his ct scan and 20th November 2013 to discuss the results and what to do next.. so i guess i wont be having a lot more entries for the time being.. maybe i can update about aisy’s progress jelah..

Dear readers,

Please pray so that my boy no longer need any more chemo.. supaya dia cancer-free for life..dan membesar dengan sihat dan menjadi anak yg soleh.. amin..

Continuation of Treatment & New Allergies

Sorry dah lama dah tak hapdate.. busy with aisy of course..  so anyway, after the MIBG scan that we had to repeat for three days.. few days later.. hospital call and asked for aisy untuk sambung chemo..the third cycle.. so maksudnya masih ade lagi lah cancer cell dlm badan dia.. hmm takpelah.. nak buat camne..

So on 5 Sept 2013, we got aisy admitted to the oncology ward.. as usual.. 5 jam chemo sehari untuk tiga hari berturut2.. Doctor said he needs to do two cycles, then kena buat ct scan for evaluation of progress later on.. hmm ok.. 

Alhamdulillah aisy was doing great masa ni.. tapiiiii... since he is so active.. masa second day, line yg pasang kat chemo port dia tercabut keluar.. luka kulit dia kat area tuh.. haiyoo.. menangis lah dia... nasib baik tercabut masa masuk air jer utk hydration.. kalau masa chemo... i yg pengsan sbb mesti terbakar kulit aisy kena ubat chemo tuh.. eish naudzubillah... haiiihh anak..anak...

So doctor pun cucuk lah line baru.. so after four days in the hospital.. treatment okay..aisy pun okay.. so its time to go home.. masuklah bilik rawatan untuk cabut line dari chemo port dia.. bila cabut.. alamak.. dada dia besar sebelah.. doctor pun cuak.. haiyookk camne boleh jadi mcm ni? Doctor perasan jarum yg cucuk kat port tuh dah terkeluar sikit.. so apparently air drip tuh dah masuk ke tissue badan aisy instead of masuk ke line port tuh.. haihhh ni mesti sebab dia banyak move nie..

So the doctor kata tunggu sejam tengok whether surut ke tidak.. Alhamdulillah after an hour, mmg surut sikit lah.. then specialist pun dtg.. specialist ni plak risau lebih.. dia takut chemo port kat dlm badan dia disconnected yang membuatkan bocor and air masuk ke tissue.. ayyyookkk.. ade kemungkinan jugak tapi rasanya macam tak kot sebab dah nampak jarum line tuh terkeluar skit dah kan.. hmm but still specialist tuh insist aisy buat xray utk check the chemo port..still intact ke tidak.. baiklahhh doctorrr.. nampaknya minggu depan kena la dtg balik utk Xray pulak.. so for the mean time doctor bagi balik rumah.. tapi dia pesan kalau tetiba tempat port dia tuh merah ke.. or dia demam ke.. kena terus bawak balik ke ward ni.. “baik Doc!!”

So we went home on sunday, 8th sept 2013.. Xray appointment was given for 12th sept 2013.. pendek kata, we went for the Xray and Alhamdulillah all is well.. benda tuh still in good condition.. so betulah it is because jarum tuh dah nak terkeluar.. thats why bengkak sekejap..tissue masuk air..

Oh before that, a day lepas aisy discharge, naik rashes satu badan.. This is something new because usually bila lepas chemo sebelum ni, dia cuma naik bintik2 skit2 jer kat tangan camtuh.. Tapi ni rashes satu badan.. Menggaru jelah dia.. Besar kemungkinan this is bcoz of the blood transfusion yg dia buat masa operation hari tuh.. 3/4 darah dia diganti dgn darah org lain.. So his allergy jadi lagi teruk.. Means darah dia dulu lagi better dari darah org ni.. Hmm well what to do.. Consequences yg unavoidable.. But a day after that, rashes dia pun subside..it didnt last long la alhamdulillah.. I didnt put anything on the rashes, biar benda tuh baik sendiri.. N it did.. Kena la notify doctor during next chemo session..

Next chemo.. is scheduled three weeks after.. which is 26th Sept 2013.. see u in that entry!

MIBG Scan

Ape tuh MIBG scan?? Mula2 i pun taktau..but of course.. google la kan..

MIBG stands for meta-iodobenzylguanidine. Neuroblastoma cells take up (absorb) this protein, and when it is linked to a small amount of radioactive iodine, it can be used to find neuroblastoma in the bone, bone marrow, and other parts of the body. Because the child’s thyroid gland will also absorb radioactive iodine, regular iodine is taken by mouth for several days before the scan to protect the thyroid.

Apa itu I-131 MIBG?

Metaiodobenzylguanidine (MIBG) adalah suatu zat yang dapat berakumulasi di tumor neuroblastoma. Apabila MIBG ditempelkan dengan ubat radioaktif (I-131) maka akan dapat memberikan efek terapi dari energi radiasi beta yang dimiliki oleh I-131. I-131 MIBG ini berbentuk cairan jernih seperti air.

Say what?? Heheheh.. doctor suruh aisy buat mibg scan which is usually used to scan Neuroblastoma.. so on 26 August 2013, kitaorg bawak aisy ke HKL balik.. biaselah..masuk URH.. cucuk line, then drove to the radioterapi building.. kat sana.. diaorg inject isotope which is the radioactive substance yang akan masuk throughout his body for one week.. and during this time aisy tak boleh dekat dengan any children or pregnant ladies... quarantine lah seminggu...oh yeah, tiga hari sebelum kena injection ni, aisy diwajibkan minum lugol iodine untuk protect thyroid dia or something like that.. tiga hari sekali tiap2 hari kena minum..tak boleh miss tau.. then after dah cucuk the isotope on that day.. kita pun balik.. three days berturut2 lepas kena injection kena sambung minum lugol iodine tuh which kitaorg campur dalam susu aisy.. because tak sanggup bagi dia orally guna syringe sebab the smell and taste is so bad.. even pharmacist pun suruh letak dalam susu dia...

The hospital asked us to return to do the scan on wednesday..coz the radioactive substance tuh kena serap betul2 dalam badan dia...so we went on wednesday, he was sedated with chloral hydrate sebelum nak buat scan.. so bila dia dah knocked out..doctor pun buat la scan.. tiba2... another 20minutes left.. aisy dah bangun.. pusing and merangkak atas machine tuh.. astaghfirullah.. macam mane ni.. hmm looks like we have to come back tomorrow lah to do another scan..

Next day we came back.. this time ade doctor and nurse from URH ikut kitaorg ke tempat scan tuh.. coz doctor tuh nak sedate him with something stronger called mida.. sama macam masa MRI dia harituh..so Alhamdulillah he was knocked out throughout the whole scanning procedure.. after 1 hour plus.. dah abis scan.. the doctor in charge of the scanning suruh dtg lagi the next day... hadoiiii..whyyyy?? coz she said ade some parts nak tengok progress bla bla bla.. haiyaakk bohsannyer dgr sebab kesian aisy kena bangun kul 6am everyday.. takpelah.. esok last..gagahkan jua lah..

Next day..which is a friday..last day of the scanning.. as usual..sedated with mida.. after one hour plus.. settle!! Yeayyy... boleh balik..results?? as usual..tunggu diaorg call lah..then only we would know whether to continue chemo ke tidak..

 

Recovery Period

Day 1 – So far he looks okay... dia kena puasa..means no milk for him at all..he is on morphine for the pain.. but i noticed that his urine bag is empty.. sampai malam dia tak kencing? I was really worried.. because the drip is going in tapi tak kencing.. takut air masuk lungs or kidney... alahai kenapa anak ibu ni... my guts is telling me that the catheter is blocked tapi doctor and nurse taknak percaya.. sampailah malam... when aisy dah makin kembang...kaki dah kembang and shining.. testicles aisy mmg dah bengkak macam nak meletup jer i tengok..then came the anaesthesiologist and told the nurse to flush the catheter to see whether benda tuh blocked ke tidak.. then bila nurse flush mmg aisy takleh lalu pun.. see!!! Ishhh.. sakitnya hati masa tuh... so this nice doctor came and replaced aisy’s catheter.. bila bukak jer catheter lama tuh..terpancut2 air kencing dia.. Ya Allah... kesiannyer aisy...mesti sakit sebab kencing tak dapat keluar kan...then bila dah tukar catheter baru.. he starts peeing...nampak dah urine bag dia ade kencing.. lega hati.. but still not enough according to the nurse’s calculation.. hadoiii... kenape ni aisy... i wish i knew what is going on with u... Tuhan jelah tau betapa runsing nyer kepala otak i masa tuh.. doctor said it takes time.. ok fine.. i kena sabar jelah..

Day 2 – He looks even worse.. still puasa..now muka pun dah start bengkak... kenape nie doctor?? Why is he getting worse?? Don’t you think you should reduce the drip that goes in..? after a few examination.. a doctor came and reduced his drip a bit.. ape diaorg ni... nak tunggu parents bersuara baru nak buat ke cam mane??? I know its saturday..semua nak cuti kan?? Tuh yang doctor pun tak nampak batang hidung.. dah nak petang baru nampak... Masa ni mmg teramat2 stress... i think if one notch up, my veins kat kepala boleh pecah kot.... last2 i went to the nurse station and asked them about the situation.. then they gave me a nice talk.. which made me feel so much better... diaorg kata usually after major surgery.. mmg the first two recovering days is the worst.. patients usually gets better after 4-5 days... ohh ye ke.. hmm.. lega la skit dgr.. so now just doa that he recovers fast n well.. malam tuh bila tgh tido.. tetiba i tersedar.. i looked at aisy..Ya Allah!!! Dia dah cabut tube yg masuk ke perut dia tuh.. aduhai anak.. kenapelah cabut..nanti nurse kena masukkan balik tube baru..nanti luka lagi laluan tuh.. of course lah, bila nurse memang masukkan new tube, menjerit sakan kesakitan lah dia.. haihh.. Ya Allah.. Kau permudahkanlah..

Day 3 – Alhamdulillah.. his urine counts is getting better and the urine is getting clearer.. happy sangat... and they have reduced the morphine lagi.. dia still kena puasa.. kesian sgt..all i can do is wet his lips sikit supaya tak kering n basahkan pacifier bagi dia isap, at least ade la sikit air masuk mulut.....so aisy is awake but still not moving much.. he must be in pain.. coz i know my son.. dia mmg takleh duduk diam if he is himself...hehe.. i miss running after him..

Day 4 – Morphine is off! Dia ade merengek2 sikit..still sakit i guess.. and also lapar..and dia still rimas dgn tube kat hidung dia tuh..tube perut dia tuh.. but he looks better.. dia dah start pusing sana pusing sini.. Alhamdulillah.. but still puasa..kesian anak ibu..sampailah tgh hari.. Datuk came and see him.. Datuk took out the tube that goes in his stomach and told us dia dah boleh minum... yeayyyyyy... syukur nyer tak terkata... so ape lagi..tunggu lagi?? Bagi dia 3oz air.. for your info, he hates plain water.. tapi kali ni..air 3oz habisss hehehehe.. kesian sgt tgk dia.. hubby n i teramat happy..

Day 5 – most of the wires are off except for the wires kat neck dia.. i insisted for them to cabut the wire kat neck tuh coz i saw like ade nanah nak develop kat situ.. dah tgh hari baru diaorg bukak.. my god.. i thought it was just a simple line at the neck vein..rupa2nya diaorg masukkan line ke main vein kat neck tuh..and then jahit kan line tuh dekat skin aisy so that benda tuh tak boleh tercabut.. ade empat Bahagian dia jahit kat skin aisy.. OMG!! No wonder la aisy menjerit2 bila nak cabut... aduhaii.. lepas dah cabut.. i brought him to the onco ward to flush his chemo port.. sebab chemo port ni kena flush once a month.. so it has been a month since his last chemo, so kena la flush..masa on the way.. i saw an Indian family.. mula2 dengar suara perempuan nangis.. then i saw a man keluar dari ICU.. family dia semua pegang dia..then suddenly he burst out crying for his son... Ya Allah... anak dia meninggal.. masa tuh.. i peluk aisy kuat2 n tak tahan sgt, trus nangis.. sedih sbb teringat that few days ago, i almost lost aisy... Malam, aisy fever sikit but not too high.. So just tuam jelah.. Lama2 temp dia pun turun.. Haihh nasib baik..

Day 6 – 21st august 2013.. Datuk came, saw aisy.. aisy punya testicles still bengkak but Datuk said it takes time to recover.. plus dia cirit birit which Datuk said will take at least one month to recover from that..hadoiii.. kesian aisy.. bontot dah terkeluar kulit dah.. so Datuk said aisy boleh discharge dah! Yeayy.. seronoknya dpt balik rumah.. aisy pun dah boleh berdiri n merangkak.. so senang hati la nak balik.. so we bid farewell to all the parents and patients kat ward tuh..and drove home..

Syukur padaMu Ya Allah...

 

Oh yea.. I forgot..

I forgot to inform u guys.. On 12 August 2013 during the event in my entry "the moment of truth".. We were informed that Aisy actually has Neuroblastoma stage 4... Mmg terkejut bila doctor announce dia sebenarnya stage 4.. Gigil bila terfikir kalau kitaorg tak bawak dia jumpa paediatrician masa dia tujuh bulan hari tuh, cam mane? Haihh... It could have been too late.. 

Menanti Hari Itu..

The day before the admission, my father came down from Penang, he wanted to see and spend time with aisy before he goes into surgery. As tough as it is for my father being a handicap, he made it to KL to see his grandson. Also to give me emotional support and assurance that Allah knows best..

So.. the day has come..Dengan hati yang konon2 cekal.. jiwa yang cuba ditabahkan.. kitaorg sampai di HKL about 10am.. aisy got admitted at the surgical ward on 14 August 2013.. hopefully semuanya okay sebab we are not used to the nurses at the surgical ward, so we don’t really know what it is going to be like.. kalau kat onco ward tuh dah biase and senang lah.. nak mintak tolong ape2 ke kan..

As we settled down.. my dad and sis came to visit and play with aisy.. also the surgeon came.. he explained again to us about the procedure.. the risk.. n the possible outcome.. he told us that they will have to reserve an ICU bed for aisy, then only they can proceed with surgery coz sometimes ICU penuh, if penuh means they have to postpone the surgery... coz usually after surgery, most children end up at the ICU...so oklah, i understand..he also showed us the ct scan results.. we saw that it was memang besar and nampak major blood vessels dia is in between the tumour.. Allahuakhbar.. his tumour is so big that it has pushed both kidneys to the side.. i saw my dad trying to withhold his tears tapi sebak dia tak tahan and i saw his tears rolling.. and so Datuk told us that the anaes will be coming later and then he left..

My sis n dad stayed sampai kenal halau hehe sebab dah lebih 2 jam dari allowed visiting hours.. heheh then about 4.30pm, they came again.. my dad’s flight back was that night, so dia nak spend time puas2 dgn cucu dia.. that was the time the anaes came.. she told us about the risk again.. and asked us to sign the release form untuk blood transfusion.. dia ckp.. “aisy punya operation ni memang akan perlu blood transfusion sebab major surgery kan.. tapi kena faham ye.. kita akan try untuk ganti darah dia sebanyak dan secepat mungkin tapi kalau kita tak boleh nak catch up dengan kehilangan darah dia, dia mungkin akan kena cardiac arrest (jantung berhenti)..and dia .. hmm.. he can die because of that..” anaes tuh ckp dengan rasa yg amat serba salah.. ..........hati i dah kebas dah rasanya.. i just gave her a nod..and signed the paper..

Then when the night came.. after my inlaws, my mom and hubby dah balik.. i just looked at aisy sleeping.. belai dia.. pegang dia.. cium dia.. bisik kat telinga dia..

“Aisy sayang.. ibu tahu anak ibu ni kuat.. ibu tahu Aisy boleh lawan cancer Aisy ni.. Ibu and ayah sayang sgt dekat aisy..ibu and ayah nak aisy membesar dengan sihat dan sempurna supaya aisy dapat jadi anak yg soleh dan bimbing ibu n ayah masuk ke jannah sayang..tapi Aisy.. kalau Aisy rasa terlalu berat untuk Aisy harungi..Aisy jangan tahan demi ibu n ayah ye sayang.. ibu n ayah faham kalau aisy terpaksa tinggalkan kami..ibu faham.. ibu tau yg aisy dah tak tertanggung lagi.. tapi aisy tunggu ibu n ayah kat syurga ye sayang.. aisy doakan ibu n ayah dari sana ye.. ibu cuma nak aisy tau yg ibu n ayah akan sentiasa berada di sisi aisy walau dlm apa jua keadaan sekali pun... we love u so much...”

..................................................................................................malam tuh, aku belajar macam mana nak sembahyangkan jenazah kanak-kanak lelaki... demi anak aku.. walaupun air mata tak berhenti, aku tegaskan jua jiwa ini untuk mempelajari ilmu itu..kerana jika Allah inginkan anakku di sisiNya, at least aku dapat memberi anak aku hadiah yang terakhir...

Inilah doaku dalam tiap2 hari...”Ya Allah Ya Tuhanku, Kau Maha Mengasihani, maka kasihanilah anak aku, sesungguhnya dia tidak berdosa Ya Allah.. Kau Maha Kuasa, maka tunjukkanlah KekuasaanMu dengan memberi belas kasihan kepada aku dan suamiku.. Ya Allah.. selamatkanlah anak aku.. hilangkanlah segala penyakit dan kesakitan yang ada pada dirinya.. Kau panjangkanlah umurnya supaya dia dapat membesar menjadi anak yang soleh yang sentiasa beribadat kepadaMu dan dapat membimbing hamba2Mu ke Jalan yg benar.. Tetapi Ya Allah, hanya Kau yang tahu apa yang terbaik untuk kami dan keluarga kami.. Jadi berikanlah kami sifat keredhaan dan kesabaran bagi mengharungi dugaanMu ini Ya Allah.. tanamlah keimanan dan ketaqwaan dalam jiwa ini supaya dapat terus beribadat kepadaMu dan berjumpa dengan anak kami di syrugaMu Ya Allah..”Amin........

15 August 2013.. hari penentuan..they told us that ICU bed tuh is available for aisy.. this means... they will proceed with the surgery...Ya Allah..permudahkanlah segalanya di dalam operation theatre itu Ya Allah...

Kul 7.30am Aisy dah bangun.. Hubby pun dah sampai dari rumah.. around 8.00am we gave aisy his bath.. tiga2 dalam toilet buat kecoh hehehe.. tau jelah.. equipment nak mandikan baby tak lengkap kat hospital tuh.. takde baby bath tub.. so kena la improvise..hahaha aisy memang loves his bath.. hmm..so dah abis mandi.. wangi2..pakai baju cantik2....8.30am....nurse datang... “Jom..OT dah panggil”...................................................................sambil nak angkat aisy and kemas2 skit barang kat katil tuh.. sambil menitis air mata yang tak mungkin dapat berhenti.. ade salah seorang ibu kepada patient kat situ dtg approach.. dia ckp.. sabar.. insyaallah takde ape2.. i just kept quiet.. and continued rearranging stuff kat atas katil tuh.. sebenarnya taktau ape yg dikemaskan pun.. just to delay time untuk ke OT je kot... then hubby pujuk and ajak pegi ke OT.. so i held aisy and hugged him tight and kissed him... then pass to hubby... dah sampai OT... i teman aisy masuk ke dalam... his ayah gave his last kiss...then i bawak dia masuk... theres a waiting area kat dlm dewan bedah tuh.. before we enter the OT.. so masa duduk kat situ.. aisy looked at me.. and smiled.. then suddenly he kissed my cheek... Ya Allah.... Jika itulah hakikatnya..ambillah aku..bagilah anak aku peluang untuk hidup Ya Allah... I hugged aisy and said..”Aisy... Aisy kena kuat tau.. Ibu tau aisy kuat... ibu and ayah tunggu aisy kat luar tau..aisy jangan pergi lagi ye sayang..ibu n ayah tunggu aisy..”. while i was talking, medical officer datang suruh masuk dlm OT.. before masuk, ramai doctors and nurses yang kerumun aisy..they all know aisy.. semua nak pegang dia.. nak cium dia.. maklumlah..ni kali yang kelima dia masuk OT..so mmg famous dah lah kat situ.. while semua tgh main2 dgn dia, one of the doctors in charge for his operation asked them to disperse as aisy needs to be taken to the OT..so semua pun wave bye-bye kat aisy... in the OT, as usual, i put aisy on the warm bed.. they gassed him down.. then i gave him the last kiss.. and i ckp..”ibu n ayah tunggu aisy kat luar yer sayang..be strong..assalamualaikum sayang”....

..............................................................................................rebah...i keluar dari dewan bedah and terus rebah... on my knees... and cried..... nyawa ni rasa macam nak tercabut.... lepas dah boleh berdiri.. i walked towards hubby.. dia tak nampak sebab dia duduk kat corner.. dia terus hug i... and i meraung....semua orang pandang...biarlah org pandang.. nyawa aku ade kat dalam OT tuh akan bertarung untuk hidup... istighfar... istighfar... tenangkan diri... baca surah yasin.. dan surah2 lain sementara tunggu....

About 10am... my aunty came.. dia pun duduk baca quran... doakan yg terbaik utk aisy.. about 11am..hubby’s aunty and grandma came.. pastuh my colleagues came to give emotional support.. at that time i felt a lil bit better.. ramai yg bagi support and kata2 semangat... in the afternoon.. my mom,sis and inlaws came.. after that hubby’s uncle came.. memang ramai berkampung kat depan dewan bedah tuh... it was about 2pm when i saw a doctor from the surgical ward lari ke dewan bedah bringing more blood for aisy... oh my god... whats going on?? Kenape ni?? Kenape dia lari2? Kenapa darah tak cukup?? Ya Allah..anak aku...

“Doctor!!” i stopped her kat depan dewan bedah tuh.. “Blood ni semua utk aisy ke? Knape bawak lagi? Yang tadi tak cukup ke? Kenape?” Then doctor tuh mcm taktau nak jwb mcm mane.. she said “oh tak.. ni untuk standby jer..dont worry”.. ohhh okay... lega skit tapi...btul ke? Is there something they are not telling me?

About 2.30pm hubby tried to find out something from the doctors kat OT coz it’s been 5 hours... then hubby came and told us that the tumour is still not out yet.. Ya Allah.. kenape susah sangat? Is it so complicated? Kepala otak ni mula la fikir yg bukan2.... tawakal..tawakal.. pastuh hubby and i keluar amik angin kejap.. then about 3.30pm we came back..baru nak minum air, suddenly Datuk (operating surgeon) came out and called us in.. ape lagi.. berlarilah hubby and i.. menggigil satu badan...

Semua family members berkumpul depan pintu dewan bedah, waiting for the result...

“Hmm..the surgery went well than i expected.. we managed to remove almost 100% of the tumour... no major blood vessels were damaged.. but hmm... “

Ya Allah...knape?? but what??

“His blood vessels to his testicles had to be sacrificed.. it was too stretched out because of the tumour..so we couldn’t save it.. he will have a problem bila dah kahwin nanti lah.. don’t worry..manhood dia still ade cuma sperm counts might be less..”

Ya Allah.... thank you Ya Allah... Thank you for saving my baby...

“This means he is doing okay Datuk?”

“Yes..he can go back to the ward.. he doesn’t need to go to ICU”..

Ya Allahhhhhhh.... aku sujud syukur padaMu atas pemberianMu ini Ya Allah... You answered my prayers...

Hubby shakes Datuk’s hands and thanked him for everything..”Oh yea Datuk, can we have a look at the tumour?”

“Yea sure”, Datuk replied.

Hubby and I hugged each other... and cried...

There it is.....

We showed to our family members who were standing outside... they were all shocked on how big it was... mmg sangat besar untuk baby umur 9 bulan.. We told them that Aisy is gonna be alright... semua nangis and hugged each other...

Sesungguhnya Engkau Maha Penyayang lagi Maha Mengasihani....

Later... After 6 long hours of surgery.. Aisy was brought back to the ward... looking at him in that condition just breaks my heart and soul into pieces... if only it was me...and not him... besar dugaan Kau pada kami Ya Allah..

 

The Moment of Truth

12 August 2013.. admitted to the onco ward.. to meet Datuk.. memang the whole morning nervous tak sudah.. we didn’t bring out all the things from the car yet..sbb taktau ape nak expect.. so we only brought out benda penting je..

About noon.. Datuk came.. Aisy was asleep.. i pun tengah yg tgh baring.. terus bangun.. hubby dalam kete tgh tido..ngantuk sangat..tdo lewat malam tuh.. so Datuk asked me to call hubby, n so i did.. hubby pun dtg..

This is what Datuk said.. more or less..

“So.. macam ni.. his tumour tak banyak changes in size.. this is because tumour dia banyak calcification.. which makes it hard for the chemo to react on it.. it decreased only a few percent.. jadi i’m considering a surgery for him..”

I said, “oh ok”

He continued.. “But u need to understand that the location of his tumour is very rare.. his tumour is extensive (very big) so it is taking space from left to right.. if the tumour is a bit lower near the pelvic, it shouldn’t be a problem.. but since the location is complicated, it will be risky.. especially because his major blood vessels are wrapped in the tumour.. blood vessels for his intestines, kidneys and some other things as well.. so if the blood vessels gets damaged, he will have a serious complication..

I interrupted, “Wait.. what kind of complications?”

He answered, “Life threatening complications, takleh guna usus dia..kidney failure..blood loss”

“Takde cara lain ke?” I tanya.. “Ade, kita sambung lagi dua kali chemo, then surgery.. but if u ask me, based on my experience, it won’t make much of a difference..and if it gets even harder, lagi susah for me to do surgery on it”, he said.

I asked again,” So in your entire experience, how many cases have u handled that has the tumour at that rare location?”

He replied,”Around 5 patients.”

..................................................................................................oh my God.. skarang nih.. i masih withhold my tears from falling eventho it’s so hard to do because need to concentrate as much as possible to what the doctor is saying..

“So he is number six la kira.. what happened to the five patients that went through with the surgery?” I tanya dgn suara yang keluar tak keluar nih..

He said, “Hmm.. some died..some lived”.

Okayyy.. when he said that.. air mata ni mmg dah tak boleh nak tahan.. sebak jiwa terus cengkam dada...... i rasa macam nak mati.. i cerita ni pun i takleh behenti nangis..

So Aisy punya chances of survival mcm mane Datuk? I continue tanya..

Chances of survival? ............................. he paused a while..then said.. 50-50..

Ya Allah... kau berikanlah aku ketabahan Ya Allah.. atau berikanlah aku penyakit anakku ini kpd ku ya Allah.. sesungguhnya anakku tak berdosa Ya Allah..

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

 

Sebelum ni, ade yg suggest untuk try perubatan alternative.. sebab diaorg ade dgr pasal this treatment yg takyah chemo n takyah surgery.. tapi kitaorg takdelah try lagi sebab ingatkan aisy okay.. so i asked the doctor..

“Datuk....... what is your opinion on alternative treatment?”

“Alternative treatment.. for me.. kalau alternative treatment tuh works.. i will be out of work.. i tak payah la keje lagi.. and if they work, nape org2 tuh tak well-known?.. plus alternative treatment punya orang never tell u the truth as how i’m doing right now.. as i told u.. chances mmg 50-50.. kalau org kat luar tuh, dia akan ckp.. oh anak u boleh lagi ni.. plus.. i have seen too many cases yg last2 mak ayah dia bwk anak dia dtg sini balik utk treatment sbb alternative treatment tak menjadi.. and in the end..it was too late for me to save them.. walaupun berjam2 buat surgery..i tak dpt selamatkan diaorg.. that is my opinion”.

Wow...marah betul dia bila sebut pasal alternative treatment..actually i agree with him... yg mana yg dapat cure melalui alternative treatment tuh mmg la Allah yg selamatkan..mmg of course semua ketentuan Allah.. tapi mungkin dia cuma ade cancer yg stage 4s ker.. yg takyah treatment and tetiba sihat sendiri..who knows.. but that’s my opinion..

Datuk tanya, “So are you planning to do an alternative treatment?”

“Eh tak.. we were just asking for your opinion..because u said 50-50..so i was just wondering” hubby jawab.

“So will u be deciding now or u’re gonna call the hospital tomorrow and give your answer? If nak proceed, we will do it this thursday, means u have to masuk rabu lah”

“hmm..ok.. i think we will go home now..discuss with our family members and inform tomorrow morning”.

My hubby and I were left in that room with intense emotions.. perasaan yg tak pernah kami rasa sebelum ni.. a VERY VERY HUGE DECISION to be made..by us.. macam mane nak buat decision yg mempertarungkan nyawa anak? How? Kalau tak buat and ape2 jadi..mcm mane? Kalau proceed and ape2 jadi..mcm mane pulak? Ya Allah.. masa tuh.. rasa diri ni kecik sgt di mata Allah.. badan rasa ringan nak tumbang.. I peluk aisy... sambil nangis.. try taknak bagi dia nampak tapi takleh tahan.. org2 kat katil sekeliling semua pandang jer tgk keadaan kitaorg..

“Dah.. jom sayang.. kita balik..nanti kita fikir yer”, hubby cakap..

So we packed up and left...

In the car... i told hubby that we need to gather our family and inform them of the heartbreaking news.. but have we decided? I think we have.. what choice are we left with?

I texted my mom and sis... hubby called his mom..I also informed my dad.. my parents are divorced, so my dad is staying in another state..and mom is here.

So family will gather at my house after maghrib.. I asked my sis if she could take the day off the next day to spend time with aisy.. coz we don’t know what’s gonna happen.. she said she’ll try..

After maghrib, hubby’s parents n sis dah sampai.. my sis n bro in law dh smp.. so we started the so called press conference to inform them of the situation.. of course some of them cried.. aisy was sleeping while it was going on.. so kitaorg pun bagitau diaorg yang we decide nak proceed with the surgery.. bcoz itu yg hati bagitau.. so i told them to spend time with aisy and play with him.. coz doctor dah bagi tiga scenario kalau proceed dgn surgery..

Number one... he survives the surgery

Number two... he survives with permanent complications..

Number three.. he dies..

 

macam mane remuknya hati masa tuh.. Tuhan jelah yg tahu.. malam tuh mmg istiqarah, hajat, istiqarah, hajat, doa, doa, doa supaya dapat petunjuk.. dan bila bangun pagi esok.. kul 8pagi.. call hospital..bgtau diaorg kita nak proceed dgn surgery khamis ni..wallahualam..

Ya Allah.. berikanlah sifat keredhaan kepada kami atas segala ketentuanMu..