Hey there.. It’s me.. Cancer..

15 December 2015... Worst day for the year 2015... Tuhan je yang tahu betapa hancur nya hati ni... this was the day kitaorg pergi amik results MRI Aisy.. I never thought I would hear it again... Doctor said the cancer is back and active.. and it has spread and showing signs of spreading further.. but he said it is not so aggressive because it took one year from the last MRI for it to spread... he said the lymph nodes near the spine is swollen and melekat to each other.. and the tumour is blocking his right kidney punya output, so kidney sebelah kanan dah mula membengkak sebab ade halangan...

Doctor suggest buat immediate operation... tapi as we already know.. the operation is high risk... so the kind doctor gave us time untuk decide.. sebab Aisy tak symptomatic pun... xde tunjuk apa2 kesakitan or symptom pun.. so macam mana nak decide? Operation tuh can make him paralyse, brain damage, severe blood loss, major complications that could cause him to.... u know...

However, if tak buat operation, slowly mungkin dia punya kidney boleh damage lagi teruk, boleh develop symptom2 lain, cancer tuh boleh spread lagi ke tempat lain and worst case scenario, doctor kata, dia boleh paralyse.. sebab main tumour yang ade tuh dekat spine L2-L5 yang mengganggu pinggang ke bawah.

Sejak hari tuh... theres not a day that goes by yang I tak nangis... last week doctor N call tanya if we have decided anything.. i told him we need to sit down with the head surgeon first before deciding anything coz nak go thru all the details of the surgery IF we ever decided to go along with it..

So far Aisy is doing well.. masih main, makan, lompat2 like a normal kid.. pergi tadika macam biasa... life is good for him now...

I don’t know what to say.. I don’t know what to think.. I don’t know what i feel..

Hari2 tenung wajah dia.. tengok jer dia bila dia bermain... wondering apa nasib dia lepas ni... anakku.. yang sikit pun tak berdosa.. yang sikit pun tak bersalah... yang sikit pun taktau apa yang sedang berlaku pada dia...

Aku pasrah... Aku berserah... apa pun keputusan yang dibuat lepas ni bukanlah dari kami kerana itu semua ketentuan Ilahi.. semuanya daripada Dia.. kerana aku milik Dia.. anakku juga milik Dia... aku cuma mintak keredhaan, keteguhan iman dan ketabahan untuk menghadapi segala ketentuan, dugaan n ujian yang diberi...

Readers, please doakan untuk Aisy Ezkandar... semoga dia kembali sihat tanpa perlu mengharungi apa2 kesakitan dan kesengsaraan dan keluarga kami juga mendapat keberkatan dan kebaikan daripada dugaan ini...

Ibu berserah sayang... Although deep down, ibu sangat berharap Aisy dipinjamkan lama sikit kepada ibu... sebab ibu belum tahu macam mana nak hidup tanpa Aisy...

Birthday boy's oncology check up & ultrasound

Salaam n hello ualls... Guess what?? It's Aisy's birthday today!! Hihihi im sure im more excited than he is hahah we had a small intimate birthday party last weekend for him.. But today, is his appointment with the oncologist n also ultrasound scan.. However cheerful we are today.. Dr said the ultrasound showed an increase in the size of the tumour (again)... So i dunno whether to rely on it or not.. Sbb harituh pun camtu gak kan.. So Dr pun ckp, tunggu jelah MRI next month mcm mane.. Since 1st december is appointment MRI dia. So we'll see how..lets pray n hope this birthday boy gets to celebrate many2 more birthdays insyaallah .. 

He is a happy boy today singing birthday songs all day long hahahha .. Nak bgtau org hari ni birthday dia la tewww hahahah

And on his 3rd birthday, thought i'd share this poem i made for him..

Aisy sayang.. This is for u..

To my Little Fighter on his 3rd Birthday

 

3rd November 2012, was the day u were born,

1001 feelings juggled inside me,

To keep you safe, to myself I had sworn,

No harm would come to you, I’d guarantee.

 

But God had His own better plan,

I was shattered to pieces when they told me,

Hoping that they were wrong scan after scan,

And finally I accepted of what was meant to be.

 

You are my one & only, my baby,

They poked, cut and poisoned you,

And I watched as you grow weary,

All I could do was wipe my tears & your vomit on my shoe.

 

I’m glad those heartbreaking days are over,

Although I still worry everyday if “it” were to come back,

But for now, I’m enjoying my days with my lil survivor,

And I thank God everyday for cutting me some slack.

 

They said 5 years.

And now you’re 3.

Can’t afford to hold back the tears.

Knowing that you’re still with me.

 

- Written by Nina Ghouse, for my son, Aisy Ezkandar, Neuroblastoma Cancer Stage Four survivor. 

 

Chemo Port Removal Surgery

Alhamdulillah… after almost a year dah tak buat chemo.. akhirnya dapat jugak tarikh nak remove chemo port.. 22 August 2014.. so we r supposed to check in the day before because the surgery is at 9.00am.. i rasa takyah la cerita the whole process kot coz im sure u know the drill… ni gambar cik abg tgh usha doctor buatpe hahaha

but on 22nd August 2014… at 8.30am we were called by the OT to bring Aisy because they need him to be on standby because the patients before him dah almost done.. so we went.. i dunno why eventhough Aisy dah went through a lot of procedures..a lot of surgeries.. my heart still fills my throat when we are walking towards the operation theatre… i know it’s a simple surgery.. it’s a minor surgery.. but.. ntahlah…

So, we got dressed to go inside and waited at the waiting area.. Aisy was being Aisy la kan… slumber dia jer masuk ke OT Hall tuh.. and within seconds he was surrounded by most of the nurses, doctors n staff there.. i just looked at him from far… admiring him actually… if i were in a movie… the camera would make a slow motion effect.. first focusing on my face.. Smiling while i looked at him.. and then camera focuses on him and the people surrounding him who are laughing away looking at his little gestures and listening to his funny words.. at this moment.. my heart said “you’re really something kiddo”… i never get a lot of that kinda moment.. that’s why i can remember exactly how i felt at that time..

Anyway.. a while after that, doctor panggil suruh masuk OT… so i went to him and carried him.. he was smiling and kept on saying “bye..bye…bye..” to everyone.. and all of them were laughing and bid him goodbye.. he thought he was going jalan2.. but right when we reached the OT.. ive never seen a child’s face change like that… honestly.. ive never seen a child have that kind of expression.. he was smiling and laughing and happy and suddenly his face literally drops and i saw fear in him… i totally broke down inside… i know it sounds dramatic but i don’t lie.. this was how it was.. he looked at me like he couldn’t believe what he is seeing… he saw the operation bed.. and oh how my heart breaks.. i had to put him down so that they could gas him..and put him out… i told myself earlier that i wasn’t going to cry.. coz its just a simple surgery…! but when i saw his face and his last look before he was put under… my heart cried so hard and my tears trickled down profusely… my lil baby… my only baby…. how could i not..right?

well.. almost an hour passed and they called us… it was done.. he is now free… syukur Alhamdulillah… guess what.. being the strong boy that he is… eventhough he was still high from the anesthetic, he wanted to walk.. doesn’t want to go to sleep… haihhh.. anyway ..so that’s that.. i hope this would be a closing chapter of his cancer story.. :)

Regular Oncology Appointment

Yesterday (13 February 2014) was Aisy’s appointment with the Oncologist.. As usual.. We did everything we usually do as i wrote in my previous post..

Sampai sana around 9am plus.. then do all the necessary things.. Alhamdulillah.. ultrasound results clear.. blood counts pun okay.. flushing pun okay.. yeay..

the doctor asked me if I have decided whether or not we wanna proceed with surgery.. I told her that i’m still waiting for Allah to answer my prayers to give my hubby and I guidance (although it seems that He has, but being human, nak kena confirm btul2) hehe but.. sape lagi yg boleh tolong? no one except for Him...

So I asked her a few questions about their plan for Aisy.. her explanation wasn’t really clear but I don’t blame her coz we as parents pun didn’t give her our consent to proceed with anything.. so the only thing thats coming up is the MIBG which could be in late March or April.. she also gave me the list of drugs that is in plan for Aisy’s chemo (if we want lah).. three different and stronger drugs than before...

Cyclophosphemide

Vincristine

Doxorubicin/adrimiacin

hmmm.. need to find out more on these drugs first before we even consider giving it to Aisy..

So that was all we talked about..she didn’t elaborate much on the MRI results coz I think she didn’t see the scan films..only the report.. so nevermind...

I was doing all the talking with the doctor.. Kesian hubby takleh join in coz Aisy is running here and there ..so kena main kejar2 around the clinic hehehe.. Before I left.. the doctor pat me on the back and said, “God only tests those that are strong and dear to Him”.. “Insyaallah it will all be alright”...

Hati seorang ibu... pilu.. sayu.. hopeful..punah ranah.. risau.. redha.. sedih.. bersyukur..

All I ask is for Him to bless me with sifat redha for all that He has planned for us..

New year's first appointment

Hi.. Its been awhile since ive updated Aisy's story.. N hope its not too late to wish u readers happy new year! Huhu well, on 2nd January 2014 is Aisy regular checkup with the oncologist at the oncology clinic.. 

So, as usual we would do the same procedure every six weeks.. Doctor check his physical progress.. Do an ultrasound to see his abdomen if there is any irregularities.. Then kena flush chemoport and amik darah to see his blood counts.. 

Alhamdulillah doctor said his ultrasound result is fine.. Everything looks normal.. So lepas dah chit chat chit chat, not much to talk about coz we r still waiting for the MRI results, so not much to consult on pun coz Aisy pun sihat n cergas like a normal kid..

After consultation, pegi amik darah and flush chemoport, alhamdulillah blood counts pun cantik.. No problem.. So dah happy, kitaorg pun balik lerr.. Tunggu jelah entry for MRI results..

Follow-up appointment or Follow-up disappointment?

20th November 2013.. was six days ago.. Aisy ade appointment dengan oncology clinic dekat institute pediatrik.. as i mention before dalam recent post, appointment ni is to discuss aisy punya ct scan and future plans..

So we arrived kat IP around 9.00a.m. hubby dropped me n aisy while dia gi carik parking.. so i went to the klinik pakar area.. hamik number, registered.. bayor rm5..and letak aisy punya nombor giliran in the box pintu nombor 6.. that is the oncology clinic.. ramai pagi tuh.. as usual.. bila tengok sekeliling.. kesian budak2 ni.. macam2 penyakit, macam2 rasa sakit.. but still they are determined to live happily.. so we as parents, will have to do our best to provide and give the best for our children kan... haihhh.. sayu hati..

So hubby pun sampai..dah dapat parking..mesti double parking.. biaselah kat IP susah sangat nak carik parking..huhu.. so neways..tunggu turn while aisy mingle dengan budak2 kat situ.. dia belai2 kepala budak ni..pegang2 muka orang tuh..hehehehe ..friendly as usual..

After awhile..tak lama sangat pun.. Doctor panggil kitaorg masuk.. so first of all.. doctor tanya aisy’s condition.. after explaining that he is doing well.. she asked to bukak kasut n socks aisy.. she checked his kaki.. ketuk lutut n check reflex.. all the things to check his saraf pinggang ke bawah is working well.. so far Alhamdulillah, all is well for now doctor said..

So.. next..doctor explained.. “okay.. so apparently tumour dia masih ade lagi dekat spine dia according to the CT scan, as you can see here”, doctor tunjuk CT scan film to us.. from the film, it shows thatade tumour around his spine and inside his spine.. dekat L4 and L5.. hmmm.. okay.. actually it is expected.. so hubby and i macam tak surprise..altho we always pray for a miracle la kan..

Oh by the way.. hubby and I also bring aisy to rawatan Islam sementara tunggu results CT scan ni.. kena ikhtiar la kan.. so anyway, doctor cakap diaorg nak refer aisy to neurosurgeon.. neurosurgeon??? Biar betul?? Operate again? Hmm.. i told the doctor.. “hmm..doctor..if nak operate lagi.. husband and i taknak kot..after what aisy kena go thru after major surgery last august.. X sanggup.. Especially spine pulak tuh”... doctor Cuma senyum je bila i ckp camtuh.. then she said takpe, kita takkan buat without your consent.. so the plan is to continue four cycles of chemo, surgery tuh depends on what the neurosurgeon says, whether boleh buat or tak.. because the spine, of course, is one of the most dangerous parts to operate on kan..but if chemo takleh get rid of the cancer cells.. then maybe tambah two more cycles...

“So ada beza ke chemo yang baru ni compared to the one yang aisy pernah buat?”I asked...Doctor replied, “Yes, actually this time the chemo will be stronger.. dulu carboplatin and etoposide jer.. since cancer to tak response the chemo.. kita buat yang baru ni which is going to be combination of three different drugs yang lagi kuat.. andinstead of tiga hari berturut2..its going to be LIMA hari berturut2..”.

Wow...seriously?? dalam hati n pale otak ni dah macam2 dah fikir.. what will happen to him kalau buat chemo tuh? Is he going to be okay? Now that he is bigger, mesti side effects lagi teruk..? kalau badan dia takleh cope up with the strength of the chemo camne? Will it be the end of everything? Tapi mcm mane kalau chemo yg kuat ni pun takleh bagi effect ape2 pun kat cancer cell dia, what then? Tambah lagi drugs? Tukar lagi drugs? Sampai bila? Pastu anak aku jadi apa? Ya Allah.. Kau berikanlah hidayah dan petunjukMu supaya kami dapat membuat keputusan yang terbaik untuk Aisy Ezkandar..

While doctor is writing down some notes and forms for us.. to arrange appointment for the next visit at the onco clinic, buat ultrasound and appointment with surgeon.. i asked..

”Honestly doctor, can u give me a truthful statistics on the survival rate for neuroblastoma (NB) cases?... i mean, dekat IP ni, brape orang since the first case yang survive sebenarnya?”

She looked at me with sympathy and said.. “hmm......honestly.. sorang dua jer......................................this is because bila patient dah cancer-free after treatment, the cancer relapse.. NB in majority cases memang relapse.. cancer tuh datang balik..and usually when it relapse................................chances tuh... hmmm.... susah sikit lah....”. this was what the doctor said to me..

“So kalau stage 4s macam mane doctor? (readers, stage 4s is the safest stage for NB, u can google this or tgk my post awal2 dulu)... Doctor explained,” Usually kita bagi fiver-year survival rate.. so maksudnya.. kalau ade 10 orang yang kena NB stage 4s, by the time diaorg reach umur lima tahun.. about 6 orang yg akan survive, which means survival rate is 60% for stage 4s..mengikut statistics lah..”...

“Ohh.. itu untuk 4s kan.. so what about stage 3 or 4 nih?”, I asked...

.................................................................. (Doctor just smiled)...................

Hmmm...okay... doctor pun tak sampai hati nak cakap sebenarnya.. its ok.. i understand..

So okay, we will arrange the appointment with the neurosurgeon doctor kata, eventho kita taknak surgery tapi apa salahnyer dengar the surgeon explain the situation kan.. so lepas dah selesai semua explanation and paperwork.. doctor asked to book date for ultrasound in January, flush chemoport and amik darah kat unit rawatan harian.. okay.. so kitaorg pun thank the doctor for being nice and patient with us.. hehehe .. we went to book the date.. 2ndJanuary 2014.. for ultrasound.. then gi flush port and amik darah, Alhamdulillah all went well.. cuak jugak sebab aisy baru tukar port baru kan.. so after all that.. kita pun pulang lah.. so for now, we will continue the rawatan Islam... and wait for the call to confirm the date to meet the neurosurgeon..

Buat sementara waktu ni.. Kena cuba sedaya upaya to prepare myself for the worse.. and always pray for the best... Allah knows best..

 

 

Aisy got to celebrate his 1st birthday!

Alhamdulillah.. after keluar hospital dua hari lepas.. i sempat lari sini sana to buy groceries and order cake and many other million things for Aisy’s birthday celebration this Saturday..2nd November 2013.. his birthday date is 3rd November.. so just nice la coz its the weekend.. i also managed to invite frens and family walaupun last minute..

Tapi yang paling hubby and i bersyukur.. Aisy dipanjangkan umur to reach 1 year old.. kami diberi kesempatan dan kelebihan untuk spend more time with our baby boy..alhamdulillah.. so makan2 yang dibuat ni is to berterima kasih to all my family n frens yang bersungguh2 doa and sembahyang hajat untuk Aisy.. Thank u all for everything.. Aisy is a very happy boy with all loved ones around him and lots n lots of presents and angpow! Heheheh

Alhamdulillah we managed to share this wonderful moment with our loved ones.. Also not forgetting aisy's ward mates.. A donor (bukan i or hubby) has sponsored goodie bags for kawan2 aisy dekat ward oncology.. Spread the love n joy sempena birthday aisy.. Tq donor! 😊

Semoga anak2 ini diberi kesihatan dan umur yg panjang..insyaallah.. 

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.. 

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.. 

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..

 

 

 

Just some thoughts of mine..

This month (July 2013) Aisy is 8 months.. wow dah sebulan berlalu..sekejap sangat rasa.. it felt like we missed seeing him grow up since banyak sangat treatment and procedures nak kena buat kat hospital..nak kena concentrate on him beating his cancer instead of helping him grow up.. eventhough dia mmg learn things at a different level.. far more advanced level which normal kids don’t have the chance to learn... i consider him to be lucky and special in his own way.. he gets to feel real compassion.. he gets to feel real pain which makes him stronger and more mature i think.. of course no parents would want their children to feel any pain or go thru any hardship tapi since hubby and i memang takde choice, we take in the positives jelah kan.. so kita nampak anak kita membesar dgn cara yg lain.. he would appreciate his playtime more bila dia ade kesempatan nak main sebelum masuk balik hospital.. he would behave better maybe.. tapi yg mmg obvious, he seems more matured than babies his own age.. mmg i tgk kat ward cancer tuh..budak2 kat situ mmg sgt lain drp budak2 biasa.. diaorg lagi pandai nak communicate.. lagi matured.. mmg lebih mcm org dewasa.. maybe because diaorg terpaksa cepat membesar disebabkan untuk memahami dan mengharungi penyakit yg diaorg ade.. takde time nak mengada2, nak demand toys ke..like any other kids.. it sounds sad but there’s a positive aspect in it.. for them.. they’re happy just to be alive.. 

Being at the oncology ward, mmg rasa sgt terkejut sebab kita tgk ramai lagi anak2 kecil yg lebih teruk dari anak kita.. masa mula2 dpt tau aisy ade cancer.. rasa macam masalah kita yg paling besar..paling teruk.. kira paling top lah.. tapi bila masuk sana.. Allah.. besar lagi dugaan Kau pada mereka yg lain ni.. tapi masih lagi terukir senyuman di wajah2 mak n ayah mereka.. anak2 itu pun masih lagi boleh ketawa.. apelah sangat utk aku bandingkan dugaan yg aku dapat.. itu yg membuat kita rasa bersyukur.. ade yg dah setahun masuk keluar ward tuh untuk treatment.. ade yg cuma tinggal skin and bones aje.. ade yg tiap2 hari buat treatment.. ade yg datang dari jauh.. Johor, Pahang, Sarawak, sabah, kedah... semua berusaha untuk berjuang.. berjuang untuk hidup.. bila teringat balik anak2 yg pernah hubby and i jumpa and sembang.. skarang dah pergi menghadap Ilahi.. sayu sgt rasa.. berlinangan air mata.. tapi banyak mana pun kita sayang anak kita.. kita tau Allah lagi sayang kat dia.. dan anak2 yang dah pergi, kita tau mereka dah dijanjikan syurga.. tapi hati tetap sayu melihat mak ayah mereka yang ditinggalkan..

Masa mula2 masuk ward tuh.. hati dah tak senang tgk keadaan sekeliling.. lebih2 lagi bila sampai waktu malam, ade seorang anak yg meninggal dunia setelah sekian lama suffer dengan cancer.. masa tuh.. jiwa ni dah tak boleh tahan.. sebab taktau nasib anak i macam mane.. mmg menangis tak sudah malam tuh.. hubby suruh i balik...biar dia yg jaga aisy malam tuh.. dari hospital sampai balik..sampai dah nak tidur kat umah pun..masih menangis.. sebab if anything were to happen to aisy, i belum ready untuk lepaskan dia..