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...

Aisy's MRI Scanxiety

Salaam n Heylo dear readers.. 

Please pray for Aisy.. He is having his MRI scan done this coming 1st december......n im having the scanxiety.. The paralyzing fear moms feel in a time period before MRIs and other scans. Time period fluctuates and depends on length of time from last scans and many other factors.

I find scanxiety hits when I am the most vulnerable. This is normally during the middle of the night like right now as im writing.. when sleep has yet to be found or I am suddenly jolted from sleep.. This is when I experience the panic attacks that cause my heart to stutter and a clammy sweat that no fan will cool. Scanxiety also hits us when our child is suddenly sick or something is out of the norm which i worry almost everyday about Aisy eventho it has never been made for public to see... Some call it Mom's Intuition, but for me it is much worse than that.

We suffer scanxiety because we have been on the other side of those scans when we never anticipated we would hear the words, "Your child has cancer." We know the reality that may not be this time, but it has been and it could be again.

Scanxiety is stronger than the faith of even the most devoted. It isn't because we don't have enough faith, but that Satan knows how to use our weaknesses and vulnerabilities to his advantage. He knows how to fill those cracks with doubts and fears.

I would love to say that now the MRIs and CT Scans are over n today I am past the scanxiety attack. But nope! Can't say that. Until I hear from the doctors the official all clear, the fear will remain! 

His results review will be on 15th december.. So i think i will journey thru half of this december with nail biting n sudden tears.. Not forgetting d panic attacks whilst driving.. But God is Great n God is Fair.. N hanya padaNya kita serahkan segalanya.. He knows best! But pls keep Aisy in ur prayers.. N hopefully the results would be that the tumour hasnt grown or by miracle, it has gotten smaller... Thank u n pls keep praying..

Luv,

Worried Mom

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. 

 

Latest update: Aisy turns 3

Salaam and hello dear readers... again my apologies for not being able to write for the past 8 months... there was some restructuring in the office, hence, workload just doubled and by the time i’m free.. dah penat nak write anything..

anyway.. my little fighter is doing well.. from February till now, aisy has had three neurosurgery appointments and three oncology appointments and a few ultrasound scans.. one of the ultrasounds mengatakan there has been some increase in size of his tumour.. tapi doctor takleh confirm coz masa tuh bukan specialist yang buat.. so we had to schedule another round of ultrasound dengan specialist... thankfully the specialist kata it was a false alarm.. howeverrrr... oncologist tak puas hati of course.. and our favourite Dr insisted to discuss with the head of onco and they have decided to have Aisy buat MRI this coming December... for the mean time, supplements yang i masih bagi pada aisy is the snake grass, 4Life transfer factor, habbatus sauda and apricot seed oil..

So far, physically Aisy has been nothing but active.. and sel-sel otak memang sgt2 bersambung.. things that he says make me laugh hari2... and semakin hari semakin manja dgn ibu.. hehehe..

This coming 3rd November Aisy ada oncology appointment and also another ultrasound scan.. and 3rd November is also Aisy’s 3rdbirthday insyaallah..

So pls pls doa that all his scans tidak menunjukkan apa2 increment pada tumour dia yer.. doakan semoga Aisy sihat sepenuhnya dan dipanjangkan umur.. thank u thank u dear readers.. may God bless u and ur family with happiness n health! amin..

meh ibu blanja gambar aisy yg latest yer..

  

AISY’S DRAMATIC MRI SESSION 2015

Hello dear readers, firstly I would like to apologise for being silent for almost 3 months.. it has been quite hectic for me at work and at home.

So here’s an update of what has been going on with Aisy... on 26thJanuary 2015 we got him admitted to HKL at the Neurosurgery Ward for his MRI.. if it were conducted under institute pediatrik tak payah overnight pun. Just come for the day jer but neurosurgery punya procedure lain, kena admitted and stay over a night for the following day punya MRI.. Aisy is now 2 years 3 months.. and u know la what they say about toddlers being two years of age right? So yeah Aisy doesn’t know how to sit still, not even for 5 minutes.. hubby and i are glad for he is active but worn out bila asyik nak kena kejar jer huhuhu...

So anyway... we didn’t have the admission form, we only had the letter they sent us few months back informing us of the MRI date. So kena lah pegi ward, amik admission form, then drive back to the emergency area to register... after almost one hour of waiting to register, and hubby kena pusing hkl tak tau brape round hehehe sian dia.. kitaorg decided to go for breakfast first because bukan nak rushing pun masuk ward since the MRI is the next day kan... so masa nak pergi breakfast, ade lah drama suami isteri... nangis2.. bla bla bla hahahhaa anyway... lepastuh we went to the ward..

So they put us in this one room with empty beds and kitaorg jer dalam tuh, so lega la sikit sebab takde org kan... well at first i thought la... N this is aisy mengenang nasib hehehe

then suddenly they moved us to the next room yg dah penuh coz there was one empty bed.. then tak sampai 5minutes. Moved us to another room... the old room where we used to stay the last time.. uuurrrghhhh... angkut lah brg2 lagi... i was quite pissed la tapi sabor jelah...

So we waited...... n waited.... n waited.... then i asked the nurse.. is there anything that we r supposed to do here? She said oh wait, let me check kul brape MRI dia esok... then she said oh ok, hari ni tak buat ape2 bcoz his MRI is at 1.00pm tomorrow. So nak check darah and masuk line semua buat esok pagi.... and i’m like ???!!!!!... so uall suruh kitaorg masuk pagi2 untuk TAK buat ape2 lah ek? When i told hubby, dia lagi bengang... so we asked when is the doctor coming coz kitaorg nak balik... like seriously, duduk tak buat ape dgn aisy duk ngamuk2 nak ke sana sini.. lari2 dlm ward..jerit2... while the other neuro ward patients terlantar atas katil with tubes coming out of the heads... kesian diaorg... 

So we waited n waited again... for the doctor... he’s in surgery, so kena lah tunggu... aisy and ayahnyer dah pegi tido kat kereta sebab aisy dah takleh nak duduk dlm ward dah...then i think around 5pm.. the doctor came... so i call hubby suh masuk balik ward... then after doctor asked me few questions.. i said to him, “i have a request.. can we go home..since theres nothing to do here today and we’ll come back first thing in the morning tomorrow around 7am..?” he called his boss and he said okay, we can go...dia ckp kalau awal2 dia tau kitaorg nak balik, he would have let us go earlier... hmmmmm anywayyyy a whole day is wasted doing nothing ... great...

Morning of 27 January 2015.... kul 7pagi dah terpacak kat ward... around 9am... nurse suruh bawak aisy to the bilik rawatan nak cucuk tangan... of course ayah dial ah bawak, anak ayah kan... menjerit2..teriak abisss... ingatkan skejap jer macam kat institute pediatrik... but it took them like 20minutes!! Gila lama nak pasang line... he was crying for full 20minutes! Mula la hati ni geram.. then finally after dah siap... tgk aisy dah mula la nangis tarik2... tengok tangan dia dah bengkak2.. belah kiri belah kanan... banyak bekas needle poke yerrr... eeeee marahnyerrr ...kalau diaorg apologise and ckp elok2 takpe.. ni kerek2 plak... hubby ckp, dah lah, lepas ni xnak masuk ward ni lagi...

Then the time came for us to go to the MRI place.. i think it was around 11am kot.. aisy kena duduk atas stretcher to transfer him there.. mmg x larat la if ibu or ayah nak angkat dia and Jalan sejauh2 alam tuh... letak dia atas stretcher dia dah meraung2... sedih..trauma semua cukup... alahai anak ibu...

After a long fast walk to the MRI centre, aisy pun tertido lepas dah nangis2.. nasib baik dia tido sampai lah turn dia untuk masuk scanning... 

they gave him sedation... sekali x cukup... dua kali pun x cukup... kena tukar sedation kuat skit.. i don’t remember the name of the drug, all i remember is it was white in colour... terus konk out....

After about 40minutes, Alhamdulillah selesai semuanya... then we went back to the ward.. tapi aisy tak naik stretcher coz they had to use it for someone else.. aisy kena duduk atas ibu dia and ibu dia duduk atas wheelchair hahahah...first time i naik wheelchair... mmg segan dengan attendant yang tolak wheelchair tuh sebab dia sgt kurus dan saya sgt bam bam hahahahah...kesian kat dia... but no choice... coz aisy tengah lalok, xleh nak jalan or carry... and so... aisy pun recovered from the drugs...minum, makan macam2..lapar kesian.. puasa since pagi lah katakan... 

then later that evening we got discharged.... tunggulah 12 February 2015 for the MRI results... urat2 leher mula lah tegang..

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

12 February 2015... 10a.m.... We went in to see the doctor... first he displayed the new films, then the old films to see the difference... 

“hmm.. it looks like there’s a change... it looks a bit bigger than the last one..” “duppp..!!” jantung sudah jatuh... then he took out a piece of paper that shows the lab results of the MRI.. the ACTUAL RESULTS!... dan dgn senang lenang doctor ckp, “oh but it says here, the tumour remains UNCHANGED...I’m sure they are right since they have the tools to measure it..” .....................like seriously??? Bagi jantung i jatuh tak pasal2, then say it’s unchanged? Haihhhh...xpe  xpe..syukur2...sabar2... then as usual la the doctors asked us about doing surgery on it n all that... then i told them our decision about not going into surgery remains UNCHANGED.

But of course.. the surgeon had to have his last words and said.. “Well alright then, but if the cancer spreads..it’s gonna spread fast”.............Well, thats only for God to know isn’t it?

Anyway.. despite the lil drama... hubby and i are truly thankful to God and to those who have prayed for Aisy’s well-being... We can never repay your kindness... THANK YOU!

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.. :)

Pemergian Wira-wira

Throwback.. masa bulan puasa harituh.. 19 July, hubby, Aisy and I pergi visit kawan2 seperjuangan kat ward cancer.. saje nak visit sebab dah lama tak jumpa diaorg.. and nak ceriakan budak2 tuh jugak la sebab dah nak raya ni.. mesti diaorg rasa down kalau kena raya kat ward kan.. dalam pale otak, nak happy2 dgn diaorg.. tapi bila sampai.. tengok kawan2 Aisy………. pilu sangat hati… yang baru keluar ICU, yang relapse.. yang tinggal skin and bone aje… sebak sangat… pastuh terjumpa dengan mak pada Qayyum.. kawan seperjuangan Aisy.. tetiba dia bagitau.. dah genap sebulan Qayyum pergi.. masa tuh air mata dah takleh tahan… tapi taknak nangis depan mak dia.. sebab taknak patahkan semangat dia.. so terus lari ke tempat lain… niatnya memang nak tanya dia macam2 tapi takleh nak control kesedihan and i taknak dia nampak i nangis macam tuh.. ingat lagi masa Qayyum mula2 masuk.. masa tuh kitaorg pun baru start treatment dalam sebulan lebih rasanya… masyaallah… punya la comel and bambam budaknya.. dengan rambut dia curly2.. and senyum aje dengan semua orang..tak pernah tgk dia tak senyum.. manja plak tuh.. memang jadi mangsa peluk la slalu..gerammm… tapi masa dia tak lama.. memang sampai balik rumah pun, wajah dia aje i nampak.. sangat terkesan dengan pemergian dia.. :(

Dan pagi ni pulak… rakan seperjuangan Aisy yang sentiasa ceria kat ward and lari sana sini and usik2 Aisy.. dah pergi mengadap Ilahi.. Baim.. sape tak kenal Baim? dia memang mesra dengan semua orang.. and always positive.. last jumpa Baim masa 19 July harituh, masa kitaorg pergi visit.. wajah dia memang i tak dapat nak kenal… lain sangat… dah tak dengar suara dia menyanyi.. dah tak macam dulu… mak dia kata dia relapse.. sayu je tengok dia macam tuh.. semoga mak n ayah dia diberi kekuatan, kesabaran dan keredhaan dalam mengharungi dugaan Allah dengan pemergian wira mereka..

Ya Allah… kau tabahkanlah hati2 kami untuk menerima segala ketentuanMu Ya Rabb.. Kau peliharalah dan lindungilah anak-anak kami di dunia dan di akhirat.. dan jadikanlah kami di kalangan hamba-hambaMu yang Kau kasihi.. :(

Innalillahwainnailayhirajiun

 

Update on Aisy

Salaam everyone.. its been awhile since my last post.. which is good coz maksudnya Aisy takde ape2 masalah in his health insyaallah.. but just for updates, Aisy’s latest check up was on 10th July masa bulan puasa harituh.. and syukur Alhamdulillah, his kidney dah tak bengkak and no progress on the tumour.. and since all is going well, the oncologist, first time jumpa doctor ni, slalu jumpa Dr. Z jer.. but this time jumpa this other doctor.. she said lepas ni tak payah buat ultrasound scan every month dah.. mulai skarang, cuma buat sekali dalam dua bulan jer.. happynyer dengar..

Tapi… haaa ade tapi… haihh.. tapi aisy kena buat chemo port flushing.. haaa?? tapi Aisy dah tak flush dah tiga bulan! sebab harituh Dr. Z cakap takyah flush dah sebab dah nak buang.. but this doctor insist kena flush jugak.. she said it is IMPORTANT to always do flushing.. haiyoo.. mula la i nak panic kan.. mestilah dah sumbat kan sebab dah 3 bulan tak flush?? what will happen to Aisy kalau dia tak buat flushing and benda tuh sumbat?? macam biaselah, me being tak puas hati.. pergi bilik sebelah and tanya Dr.Z, “camne nie? kata dah tak payah flush and now this doctor suruh flush? Aisy dah tiga bulan tak buat flushing..i thought u said tak payah dah?” huhuh Dr.Z diam jap and masuk bilik dia..

After few minutes, she came in and said, “Takpe, tak payah flush, i already called the doctor kat ward cancer tuh and we will get you the closest date untuk remove chemo port dia, we will call u and tell u the date.. it should be somewhere near Raya.. so maybe takleh balik kampong la..”

Hmmmm….okay.. that’s good if we can get the closest date la kan but we might have to cancel the Penang trip… huhu… takpelah as long as its out.. im happy.. and so dah selesai semua.. we went home..

……………………………………..

And now, we still haven’t got the date for his chemo port removal… kerisauan melampau.. and every week mesti call doctor kat ward to ask the status.. being the persistent mom that i am hehe.. but Dr.N has been really nice to entertain my calls and try to accommodate as much as he can.. we haven’t been given a date because memang waiting list sangat panjang and selalu ade emergency cases.. so memang susah nak dapat the Operation Theatre (OT) for this.. i understand but im just so worried sebab Dr kata, if tak buat flushing lama, can cause thrombosis.. which is blood clot yang boleh menyebabkan peredaran darah terganggu and menyebabkan tisu yang tak dapat supply darah and oksigen tuh mati.. haihhh.. naudzubillah.. i really hope this does not happen.. aisy dah sihat.. i taknak lah benda ni jadi ancaman to his health kan.. hopefully dapatlah date for next week.. hari2 pikir.. Plus we are still waiting for a date untuk buat MRI before year end..semoga dipermudahkan segalanya..

Pray for Aisy..

Aisy's monthly scan

Salaam n greetings readers, its been awhile but theres not much to update since Aisy is now only going for his regular check up every month with his oncoligist.. And another with the neurosurgeon.. 

Well last Thursday, we went to the paediatric institution, did his ultrasound scan and clinic check up..

Menangis la dia kat atas katil masa scan tuh, nangis mcm kena pukul.. Sampai sedu sedan.. Then trus crawl up kat ketiak ayah dia and fell asleep tertungging heheheh poor baby.. Tired of crying..

Alhamdulillah doctor said the tumour has no progression.. Means it didnt grow and nothing weird kat abdomen dia.. But unfortunately his kidney is still mildly swollen.. Still dunno what the cause is n still have to observe his urine n all that.. 

Otherwise he is doing very well n is indeed very active alhamdulillah.. We will be meeting the neurosurgeon on the 17th just to keep him updated of his condition.. 

Ohh and after his check up, Aisy visited his cancer mate at the main building kat ward mata coz kwn dia retinoblastoma, tak sempat nak bergambar coz they had to leave for surgery masa kitaorg sampai.. Diaorg sempat bagi buah tangan jer dari Kedah.. Time kasehhh!! 

So lets keep praying for Aisy to be cancer free for life and also for those children who are still fighting.. May God give us strength.. :)

Oh yea, n the cat kat depan main building tuh takut dgn Aisy coz Aisy asyik nak kiss dia jer hahaha.. Aisy loves meeooowww..

Update on Aisy

Salaam all.. well as you know, harituh Aisy buat MIBG scan.. masa first day tuh dia terbangun half way, so we had to repeat scan the next day..hehehe tapi kali ni doctor bagi stronger sedation supaya dia tido lama skit...

Alhamdulillah Aisy tido throughout the scan and the doctor told us that Friday tak payah repeat dahhh..coz aisy tak move langsung ...yeayyyyyy.. seronok sgt.. takyah lah masuk sedation lagi kan..

Ni muka dia yg masih high.. Cian anak ibu ni..

So itu cerita MIBG.. semalam pulak, aisy ada ultrasound appointment at 9.00am and also appointment with neurosurgeon at 9.30am..  

konon2 nyer the ultrasound will only take a while.. but unfortunately, the doctor discovered that his right kidney ada a bit of enlargement.. bengkak sikit.. so, diaorg korek balik all results dia from the last MRI scan bla bla bla and had some discussion among them.. so they said kena tunggu lagi 30-40minutes.. time was 11.00am dah masa tuh.. however, the doctor dah call the neurosurgeon clinic and told them that Aisy will be late for his appointment.. Nasib baik clinic okay.. kalau tak, nak kena postpone bagai..malas la nak kena amik cuti lagi..

So kitaorg pergi la rounding2 dalam kereta dulu.. sambil makan n minum.. dengan Aisy tak habis2 nak ngamuk jerr.. letih la tuh.. haihhh.. hati ni dah rasa macam2 dah bila diaorg kata buah pinggang bengkak sikit.. otak pun fikir bukan2.. hmm... then after 40minutes, kitaorg pegi balik kat tempat ultrasound tu.. so they requested to do another ultrasound just to make sure the images are clear.. diaorg scan spine dia and they said the tumour is still there.. hmm.. so we finished everything around 12.20pm. so rush pegi ke the new building to see the neurosurgeon..

Ni muka ngamuk sbb lama sangat dah menunggu huhuhu

dah sampai tuh, takyah register ape pun. nurse tuh terus tanya, “Aisy Ezkandar ke?”.. ohh rupanyaa doctor dah menunggu.. but not the neurosurgeon himself..another doctor yang tolong dia kat situ just to see patients yang follow up like Aisy.. but the neurosurgeon did pop up sekejap to see.. ayat dia memang takleh blah.. “So, anything? takde ape2 kan? haa oklah, banyak lagi patient i nak jumpa”.. and he left the room just like that.. hmm i guess that’s the treatment you get when you don’t follow their advise.. hihihih takpelah.. Allah kan ada..

So tomorrow is Aisy’s appointment with the Oncologist.. we’ll see how it goes.. debar jantung ni nak tau MIBG scan results dia.. hopefully all is well... insyaallah.. :)

Ok folks, will update you with the results soon.. cheerio my silent readers..!

Second MIBG scan

Salaam n hi all.. Im writing this while waiting for Aisy tgh buat MIBG scan.. If some of u r not sure what MIBG scan is.. U can read my post from last year. I dah pernah tulis coz this is aisy's second time buat this scan.. 

Two days ago we came here untuk aisy kena cucuk radioactive into his body system.. So as usual, not allowed to be near other kids, preggers and avoid contact with his poopoo n peepee heheh

Then kena tunggu dua hari, and today he has started the 1st day of scanning.. Kesian budak tuh kena bangun awal pagi.. Muka groggy but still in a good mood hehe

Usually this scan will take up 3-4days.. So most probably, aisy have to repeat d scan tomorrow n friday as well.. 

So hopefully when we get the results, it would be positive lah huhu.. But if its not, its okay. We will fight harder insyaallah.. Lots of prayers from u guys would really help a lot :) merci.. 

Decision Decision..

The day has come where we have to give our decision to the neurosurgeon. Unfortunately, I tak dapat pergi because of my sudden back pain yg membuatkan i takleh jalan, duduk sakit, berdiri pun sakit.. Haihh.. So hubby had to go by himself to see the neurosurgeon...

So the whole day, i waited for him to come home and tell me what the doctor said regarding our decision.. biaselah lelaki, they never tell a story in detail kan.. unlike most women where kita akan cite kat dia dari time kita sampai hospital, sampailah balik hehehehe.. betul tak? so this is how hubby sums it up lah..

Reach the hospital and got to see the doctor around 1.30pm..

Hubby: So doctor, after much deliberation and sembahyang istiqarah.. our decision is not to proceed with the surgery..

Surgeon: Oh i see.. but u are aware of the risks right?

Hubby: Yes, i’m aware..

Surgeon: Alright then, I respect your decision.. but Aisy has got to come here for regular check ups yeah.. perhaps every six weeks..just to see his progress..

Hubby: Sure, no problem. Thank you Doc.

Left the room at 1.45pm...

Logic tak conversation ni takes 15 minutes? hehehehe tak logic kan? im sure theres more to this.. tuh la tak suka bila miss important appointments mcm ni.. hahahaha

Anyway, on a serious note.. our decision is not to proceed with the surgery.. we are seeking and trying alternative treatment (no, not bomoh).. after praying and doa for guidance from God.. He has led us to this decision.. and Insyaallah we stand firm by it whatever the outcome is.. good or bad.. it is all His plans for us.. the only thing is.. whether we are ready to accept it or not..? I sure hope we are..

Well readers, please pray for my son’s well-being.. so that he can have a healthy and normal childhood..

Thank you..

 

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..