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!

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..