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!

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..

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..

 

 

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!