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..

Neurosurgery Clinic Appointment

Yesterday was Aisy’s appointment with the neurosurgeon.. the neurosurgery clinic was at a new building..cantik jugak lah.. we arrived around 8.45am.. appointment kul 9.00am.. carik parking at the kat dlm building.. Alhamdulillah adelah spot.. tapi illegal.. ade org warning kata jgn park sbb nnt kena clamp..tapi sbb dah penuh parking, nak buat camne? And ramai yg park illegally.. takpelah..tawakal jelah..

So we reached the neurosurgery clinic at level 5.. gave aisy’s name..pastuh tunggu.. we waited for almost four hours.. haihhh.. dengan aisy jalan sana jalan sini.. jatuh terlentang..terhantuk kepala..nangis jerit2.. taknak susu.. haihhh.. sabor jelah heheheh

Finally.. about 12.40pm, we were called in.. so doctor saw Aisy.. tengok kaki dia..tengok cara dia berjalan semua okay Alhamdulillah..

Doctor went thru his CT scan.. he said as what the oncologist said lah, ade penetration to the spinal cord.. so he wants to do another MRI next month because the last MRI buat masa 9 July 2013.. dah lama dah..before surgery.. he said if MRI shows its okay, then takyah lah surgery, but if MRI shows its still there, then most prolly they want to proceed with surgery.. he actually explained the surgery quite in details..and graphic as well.. he showed us pictures of surgeries yang pernah dibuat.. Allahhh.. dia kata spine tuh dia akan bukak and kaypak ke belakang untuk buat surgery pada the layer beneath.. rasa mcm nak pengsan je tengok benda2 mcm ni.. then imagining it done unto Aisy..trus rasa cam nak mati... Allahuakhbar..i don’t want to share the pictures here coz its too gruesome to see..and not advisable for viewing..

But the thing is he said.. if surgery.. its either it will be successful, or if dia tengok tumour tuh dah melekat pada spinal cord, he wont do anything and juz close it back.. boleh? Or..if the brain punya sambungan thingy (sorry tak ingat nama) leaking or bocor, it can lead to massive infection and brain damage.. or.. u know what lah.. wow... and we as parents are supposed to decide this kind of things la kan.. antara hidup and mati... Ya Allah please guide us..

So okay.. after about 40 minutes of consultation.. he said his clinic will call to confirm the MRI date.. and new procedure, nak MRI or do any scanning, kena admitted a day before.. haiyooo... bohsannyerr.. takpelah..Aisy punya pasal.. so ape2 pun.. we have to wait till the MRI results comes out lah..which i think maybe end of January or early February.. but we will be doing an ultrasound this coming 2nd January 2013..also meet up with the oncologist for further discussion.. wish us luck and please pray for Aisy’s well-being!.. Thank you..

 

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..

 

 

 

The Call

I was at the office.. it was late morning.. around 11am.. an sms came in.. Theres a missed call..looked at the number.. hmm.. its the hospital

..................................... called back.... didn’t know what to expect.. “Hello, this is Aisy’s mother, did anyone call me?” I asked.. “Yes this is Dr N here, i called just now.. Mommy are u free to come in after aidilfitri on 12th August 2013, Datuk would like to meet you”. Dup!! Jantung stop kejap.. is this good news or bad news??? “ohh..is Datuk considering him for surgery? Does this mean that his tumour has reduced after the two cycles of chemo?” I asked excitedly.. “Well.. yeah maybe.. but i think it’s better for Datuk to explain”. Dup!! Again my heart stopped.. okayyyy..this doesn’t sound so good.. hmm ... “Do u have a problem with the date mommy.. if you do we can try n change with another date..no problem..u can always confirm with ur husband and call me back later”.. The doctor sounds so pleasant.. “Sorry..i’m ok with the date but just lemme confirm with my husband n get back to u asap..thanks doc” I replied.. Called hubby immediately, informed him about my conversation with Dr.N.. hubby paused a little... then agreed on the date.. and so i called back the hospital.. confirmed the time and date with Dr.N..

Few days later was raya.. I celebrated with only half the heart..

His First Chemo Cycle

On 21st June 2013, the hospital called. Doctor said Aisy kena admit for chemo this coming Monday..huh??? biar betul.. katanya results BMA and biopsy excision tuh will only come in another two weeks.. nape tiba2 kena buat chemo ni? Ishhh.. perlu ke?? I memang sangat risau time tuh.. then i asked why tetiba nak kena buat chemo ni? U’ve never mention nak start chemo any time soon pun.. then the doctor said they studied Aisy punya ct scan results (ct scan yg buat kat Pjaya hosp awal bulan tuh) and diaorg tengok benda tuh agak entensive, agak besar..so kena start chemo asap.. lah pulak.. betul ke? Hati ni memang rasa tak senang..sebab macam out of a sudden sangat.. tak puas hati.. so i said i will call back soon sebab nak kena inform hubby la kan.. ok so then i call la hubby, dia pun terkejut nape tetiba nak kena start chemo.. pelik sangat.. sebab masa kitaorg kat hospital tuh, diaorg takde mention pasal chemo plak.. lagi2 bila specialist tuh mention aisy mungkin stage 4s kan.. stage 4s kan takyah chemo or surgery ape2 pun.. cuma observe jer..

So hubby said..why don’t i call my cousin who is a doctor in Ireland and ask her about it.. so Alhamdulillah we managed to call her through viber.. so we asked her one thousand and one questions lah.. since she is quite familiar with cancer and its treatments, she gave us the advice to go through with it.. because dia kata.. chemo tuh tak murah.. and lagi2 govt hospital takkan nak buat treatment sebarangan.. plus doctor takkan suruh buat kalau benda tuh tak penting.. since doctor tadi cakap benda tuh quite extensive, that’s why diaorg suruh start asap... haihhh.. lega sikit lah after consulted my dear cousin.. ok, since we already get the advice.. hati nih tenang la skit.. so combine kan dengan solat istiqarah.. we made the decision to go through with it.. so i call balik IP (institute Pediatrik), and told them kitaorg masuk rabu.. sebab isnin n selasa tuh nak masuk office and buat paperwork bagai untuk amik cuti.. and also to explain to our bosses lah..

So as days go by.. rabu pun datang.. 26 June 2013.. pagi amik darah, masuk line dekat chemoport.. then petang pukul 6pm, start pasang chemo.. chemo nih macam masuk air caranya.. set kan dekat line yang ke chemo port tuh, then tunggu lah sampai ubat chemo tuh abis.. aisy punya treatment is dua jenis drugs.. etoposide and carboplatin.. eto dalam 4 jam, then sambung carbo sejam.. so treatment dia sehari is 5-6 jam.. and dalam satu cycle.. aisy kena buat chemo tiga hari berturut2.. so, 1 cycle is 3 days in a row, 5-6hours per day..

Doctor explained that aisy will be doing two cycles and then buat scan untuk tengok progress.. then they will decide whether to do surgery or sambung lagi chemo.. and doctor told us aisy is actually stage 3 minimum.. for now..hmm.. ok.. stage 3.. wow.. kita ingat dapat discover awal2 mcm ni, dia maybe stage 1,2, or 4s.. rupa2nya dah stage 3 minimum.. ok takpe.. control sebak.. sebab macam2 nak tanya specialist nih.. sebab yang dtg jumpa kitaorg is the head of onco specialist kat situ.. so banyak lah soalan yg i dah sediakan and key in dalam phone untuk tanya..huhu.. we as parents mmg kena be fully aware of types of treatments, risk factors and all that.. we HAVE to do as much homework as possible about penyakit anak kita.. because we need to understand nape doctor buat itu ini..and we can also suggest to doctors pasal treatment n penjagaan anak kita melalui research kita..my advice to all parents, pls pls pls jgn just depend on hospitals and doctors untuk treat anak kita ikut kata diaorg jer.. we have a say and we must know what we are saying! Research research research.. tanya orang sana sini.. and we can also know what to avoid and what to get for supplements and all that.. jangan tunggu doctor or nurse bagitau sebab kadang2 diaorg tak ingat pun nak inform kita.. seriously.. it is our job to know as much as possible for the sake and betterment of our children.. wahh lecture plak.. ok2.. but im really serious about this.. parents KENA amik tahu!..

So anyway.. doctor said aisy stage 3 minimum for now (means tak confirm lagi, it could be worse), risk group intermediate-high risk.. okay.. saya makin cuak.. hmm okay.. then doctor said tumour aisy sangat besar and ianya dah infiltrate, dah masuk ke dalam spine canal dia.. Allahuakhbar.. muka rasa kebas sangat bila dengar doctor punya findings.. primary tumour is at the nerve tissue beside the spine and above the kidney.. possibility of surgery will be advised by the head of surgeon (Datuk) after the MRI scan.. so i tanya about side effects.. doctor said, usually below 1 yrs old, babies tak tunjuk sangat side effects except hair loss and burned skin.. dari segi long term.. possible chance utk cancer tuh datang balik untuk case neuroblastoma is only 1% tapi ini untuk patients yg kat hkl la.. secara worldwide, they don’t know lah..  haihhh... letih hati.. letih minda.. dengar semua benda2 ni about anak kita.. rasa macam nak lari je masa ni.. bawak aisy lari jauh2... but.. reality bites.. nak tak nak.. we have to go through it.. we have to save our baby..

Ok so on that day, kul 6ptg, start chemo until 12am.. pastuh sambung masuk air minimum 8 jam.. first day so far Alhamdulillah... second day pun sama.. syukur.. and second day ni doctor bgtau yang Bone marrow dia clear.. takde ape2..alhamdulillah.. tapi dia punya lump yang buat biopsy excision last week tuh turns out to be neuroblastoma.. alamak.. okay.. maksudnya cancer dia dah spread la kan.. terduduk kejap.. ok, xpelah sebab benda tuh pun dah buang kan.. hopefully takde kat tempat2 lain..

Then third day, tetiba bila family ramai datang visit.. tetiba aisy nangis2 tak henti2.. asyik rengek2 jer.. aduhhh knape plak ni... panas sangat ke? So since aisy pun dah tak selesa, kita advice sume visitors balik lah kan.. sebab nak aisy rest.. then suddenly badan panas gila..terus bukak baju dia semua.. then tuam dengan air.. 

alahai kenapa anak ibu ni... tiba2 jer demam.. then nurse check temperature.. panas.. dah 38degrees.. pastuh 39.. pastuh 39.5.. Ya Allah selamatkanlah anak aku... aisy dah tak bermaya.. tak nak minum..tak nak makan.. takkan dia demam sebab ramai visitors? memang ade org advice supaya jangan ramai2 visitor masa chemo, sebab immune system fragile..tapi usually immune system fragile bila seminggu dua lepas chemo.. ni baru tiga hari, takkan dah kacau immune system dia? Hadoiii.. tak tau nak fikir ape dah.. terus bgtau semua, jgn visit dah lah kecuali aisy punya grandparents jer..

So kena lah pindah ke bilik demam.. kat ward ni ade tiga bilik demam.. bilik 5,6 and 7..so masuk bilik 6.. ingatkan Sabtu dah boleh balik..kena la tunda.. ok xpe, doctor kata kalau takde infection kat darah, aisy boleh balik sebab demam biase jelah.. tp kalau ade bacteria dlm darah.. memang tambah seminggu lah percutian di situ.. huhuh.. so kita pun doa2 so that takde infection,.. tup tup doctor bgtau darah dia infected ... Allahuakhbar.. padanlah anak aku lesu semacam jer..

Bila specialist dtg, dia pelik kenape cepat sangat infected nih.. selalunya lepas seminggu dua.. so diaorg pun bagi la antibiotic course untuk seminggu.. so i whatsapp cousin i yg kat Ireland tuh..bgtau dia pasal aisy demam sume.. then dia suruh check chemoport aisy, takut ade infection.. eh ye ke? Boleh jadi ke sebab tuh? Ok ok takpe..nanti i bgtau kat doctor.. then i told this one doctor.. i nak tengok aisy punya chemoport sebab takut infection.. chemoport tuh ditampal dengan gauze bila letak line so takkan nampak ape2 yg jadi kat situ.. so then doctor kata tunggu rabu sebab diaorg slalu tukar dressing once a week.. i ckp oh no no.. i nak buat skarang jugak.. i btul2 insist.. biarlah doctor tuh tak suka i pun..huhuh..yg penting kesihatan anak i.. ok, doctor kata, esok pagi kita buat since ni pun dah malam kan.. kalau ape2, lagi senang bila spelcialist ade.. ok esok pagi.. fine.. i boleh tunggu..

so esoknya.. pagi2 i dah tanya bila nak bukak tgk.. ye, kita as parents ade hak yer.. like i said before, kita kena amik tau... aisy punya temperature time tuh dah sampai 40 degrees... Dgn muntahnya lagi..memang i berserah pada Tuhan jelah.. xleh nak buat ape.. cuma i boleh usahakan yg terbaik jer untuk aisy.. so pagi tuh, diaorg bukak, tgk macam merah skit tapi takde ape2.. tetiba i notice ade macam lendir kuning kat gauze tuh.. lendir tuh mcm dah keras lah.. but i tunjuk la doctor tuh.. then bila doctor tekan port dia.. memang terkeluar nanah.. haaaaaaaaa kan aku dah kata!! So doctor ape lagi, picit2 kasi semua keluar, memang melalak la anak i.. nanah yg dikeluarkan is about 10cc.. sangat banyak okayyyy.. rupa2nya sebab tuh lah dia demam..

so infection tuh salah siapa? Atau takleh nak salahkan sesiapa? Bcoz benda tuh subjective.. mungkin equipment tak bersih masa diaorg pasang line pada hari pertama tuh? Atau nurse and doctor yg tak bersih? Atau mungkin badan aisy sensitive untuk terima foreign objects? Or bacteria badan aisy reacted badly terhadap needle tuh? Macam2 lah possibility.. i malaslah nak fikir panjang2 pasal ni.. so i updated cousin i bgtau yg mmg chemoport dia infected. So she said kena immediately remove.. so i tanya la specialist kat situ, bila nak remove.. dia kata, oh, x semestinya kena remove.. kalau kita boleh save benda tuh, kita save la.. sebabtaknak banyak kali buat operation chemoport insertion tuh.. tapi kena tunggu surgeon dtg tgk dulu..hmm ok... i pun bgtau cousin i.. cousin i mmg dgn sungguh2 suruh remove benda tuh sebab kalau tak remove.. bacteria tuh maybe still akan ade kat situ.. and if aisy punya immune system tetiba low.. and the bacteria starts seeding.. it can be really2 bad for aisy.. Ya Allah macam mana boleh jadi macam ni... kesiannyer aisy..

panjang cerita entry nih..nak buat camne.. his first chemo.. 11 hari kita kat hospital.. so Panjang lah ceritanya.. sabar yer.. hehehe.. so anyway, esoknya Datuk dtg tgk aisy.. he said, memang kena remove lah bcoz dah infected.. Alhamdulillah.. nasib baik Datuk ni on the same page as us.. so aisy is scheduled untuk chemoport removal surgery on Thursday.. lega hati rasa.. nanti bila nak buat next cycle, baru surgeon akan masukkan chemoport baru untuk aisy.. which is in two weeks time.. so lepas removal tuh, Alhamdulillah aisy dah boleh senyum.. boleh pusingkan badan.. boleh merangkak sikit2.. (gambar bawah is lepas kuar dari dewan bedah) syukur Alhamdulillah.. thanks to my dear cousin and the smart Datuk doctor..so hari Sabtu (6th july), barulah dapatdischarge.. but aisy still kena complete dia punya antiobiotic kat rumah for another five days.. selesailah satu chapter.. hadoii...dugaan2.. harap2 takdelah jadi macam nie untuk next chemo cycle..

so next appointment, Aisy will be doing a bone scan on 8th july, MRI on 9th july (ni utk dijadikan mcm base line utk compare dengan MRI lepas 2nd cycle).. then masuk balik hkl untuk chemoport insertion and 2nd cycle of chemo on 17th july.. so our lives are spent more in the hospital than at home.. need to get used to it lah.. takpelah.. anak punya pasal.. yg penting..dia sihat.. ok, c u guys in the next entry.. 

 

First Admission to the Oncology Ward (Cancer Ward)

19 June 2013.. first time masuk ward oncology..these past few weeks, i thought my son was having the worst disease, neuroblastoma.. lemme share with u the description and stages for further understanding..

Cancer begins when normal cells change and grow uncontrollably, forming a mass called a tumour. A tumour can be benign (noncancerous) or malignant (cancerous, meaning it can spread to other parts of the body). Neuroblastoma is a solid cancerous tumour that begins in the nerve cells of infants and young children. It can start in the nerve tissue near the spine in the neck, chest, abdomen, or pelvis, but it most often begins in the adrenal glands. The adrenal glands are located on top of both kidneys and make hormones that help control body functions, such as heart rate and blood pressure.

Neuroblasts are immature nerve cells found in unborn babies. Normal neuroblasts mature into nerve cells or adrenal medulla cells (cells found in the center of the adrenal gland). A neuroblast that does not mature properly can continue to grow, leading to neuroblastoma. However, babies are sometimes born with small clusters of neuroblasts that eventually mature into nerve cells and do not become cancer.

Neuroblastoma develops most often in infants and children younger than five. It can form before the baby is born and can sometimes be found during a prenatal (before birth) ultrasound. Most often, however, neuroblastoma is found after the cancer has spread to other parts of the body, such as the lymph nodes (tiny, bean-shaped organs that help fight infection), liver, lungs, bones, and bone marrow (the spongy, red tissue in the inner part of large bones).

The following is a brief summary of each INSS stage:

Stage 1: The tumor can be removed completely during surgery. Lymph nodes removed during surgery may or may not contain cancer, but other lymph nodes near the tumor do not.

Stage 2A: The tumor is located only in the area it started and cannot be completely removed during surgery. Nearby lymph nodes do not contain cancer.

Stage 2B: The tumor is located only in the area where it started and may or may not be completely removed during surgery. Nearby lymph nodes contain cancer.

Stage 3: The tumor cannot be removed with surgery. It has spread to regional lymph nodes (lymph nodes near the tumor) or other areas near the tumor, but not to other parts of the body.

Stage 4S: The original tumor is located only where it started (as in stage 1, 2A, or 2B), and it has spread only to the skin, liver, and/or bone marrow (in infants younger than one). The spread to the bone marrow is minimal (usually less than 10% of cells examined show cancer).

Stage 4: The original tumor has spread to distant lymph nodes (lymph nodes in other parts of the body), bones, bone marrow, liver, skin, and/or other organs (except for those listed in stage 4S,above).

Ini some of the information that i could share..u boleh do ur own research if u like.. dia macam ni.. kalau stage 1,2 or 4s.. memang selamat lah.. means the cancer is in save stage.. stage 3 tuh is worrying lah.. stage 4, of course u all know la kan... stage 4s tuh is actually yang paling selamat in my understanding sebab tak perlu treatment or surgery.. cuma observe dan buat check up every other month jer.. so hubby and i memang harap aisy cuma stage 4s..

So on our first day of admission kat onco ward tuh, memang rasa terkejut sangat sebab tengok all the children there yang serba botak.. kurus.. lesu.. walaupun ade yang ceria jugak tapi this is a whole new thing to us.. memang in my entire life.. this image is like a new picture that i have never seen and never even thought about.. hubby tengok i..i tengok dia.. Ya Allah.. sangat menyayat hati..

Ok..dah dapat bilik and katil.. ward onco lain dari ward surgical.. ward onco ade bilik untuk 4 katil and semua ber-aircond.. i guess maybe sebab budak2 ni buat chemo.. so mestilah kena sejuk kan since chemo tuh sangat panas..

Jadi kitaorg pun tunggu doctor datang.. who came around 11am kot.. shes one of the specialist kat situ.. she checked on Aisy and said that Aisy could be a stage 4s since he doesn’t show any bad signs and he is cheerful (hubby n i dah tersangat happy with this possibility!!). So they’re gonna do the BMA untuk tengok staging.. ok dia macam ni.. untuk buat staging takes a lot of tests and scan sebenarnya... BMA, MIBG scan, CT scan, MRI, bone scan dan macam2 lagi.. masa time ni kitaorg tak tahu pun.. kitaorg ingat lepas buat BMA tuh.. terus dah boleh tau exactly staging nyer mcm mane.. biaselah.. first timer..

Then bila petang skit.. ada skin biopsy experts datang jumpa kitaorg sebab doctor onco informed them of dia punya nodule yang kat left chest tuh.. remember i told u guys bout this? If u’re not sure, u can check my entry entitled “when we first felt it”. So they also wanted to do a biopsy on that lump jugak but when they checked, apparently benda tuh is not skin deep.. it is deeper than that.. so instead doctors decided to do a biopsy excision..bermaksud they take out the whole thing instead of amik sample jer.. and study the lump.. so we said okay since kitaorg pun nak tau ape kat dada dia tuh.. and its better to just take out the whole thing kann..buatpe nak tinggal2.. since benda tuh pun benda foreign..

So the next day arrived.. aisy macam biase lah..kena puasa from 3am.. then kul 9am pegi dewan bedah.. this time ayah aisy pulak yg teman aisy masuk dalam.. he was again given the general anaesthetic (GA) for the procedure.. kali ni kurang risau sebab dah tau yg dia tak allergic pada GA kan.. but still worried of course.. anak masuk OT.. sape yg tak risau.. so tunggu ayah dia keluar dari OT room.. tetiba i saw him coming out bursting in tears.. alahai.. i immediately hugged him.. and he cried n cried.. of course i pun nangis lah.. sebab boleh dapat rasa kesedihan yg sama.. Especially when i see my strong hubby nangis.. and dia plak bukan jenis yg nangis.. lagi la i sedih tengok.. then after a while, dia pun calm down.. then we chatted and prayed aisy okay kat dalam tuh.. hati tenang sikit daripada the first time but still... dup dap dup dap jantung.. nervous.. risau.. then i think about 12pm dah settle semuanya.. wahh cepatnya.. aisy pun stable.. Alhamdulillah.. thank you Ya Allah.. so bawak la dia balik ke ward.. bagi dia susu n then dia tido sebab masih high kena GA tuh.. then bila dia dah bangun.. segar je.. terus merangkak rangkak.. hehehe 

then about 3pm, doctor came.. tgk semua okay.. then dia kata boleh balik...huh?????? boleh balik??? Biar betul doctor nih.. baru je habis procedure kot?? But doctor dgn nonchalantly, cakap.. yea, why not? Since aisy okay jer.. hmm .. ape lagi.. terus packing n blah lerr hehehe.. as usual, we had to wait for the call next week to see what is in store for us..