Wednesday 25 December 2013

Second MRI

Haluu.. Well apparently aisy punya MRI came sooner than we thought.. I tot it was going to be done in january 2014, but suddenly the hospital called me last friday.. And asked us to admit Aisy on the next Monday which was two days ago.. Coz they wanna do an MRI on 24th December 2013. Hmm ok lahh fine.. Tp yg lecehh nyer is kena admitted one day before.. Sebelum ni masuk unit rawatan harian jerr. But now new procedure, hv to stay there d day before... Oklah i tot to myself, maye its not so bad lah.. Coz they asked us to admit an the neuro building instead of tempat biase which is institut pediatrik.. Hmm ok.. So since hubby keje, i asked a favour from my mom to drop me n aisy off at HKL.. Nasib baik dia ade..

So came Monday, kitaorg pun gerak to HKL about 12.30pm.. Smp around 1.30pm, mama dropped me at the emergency untuk i buat pendaftaran.. Pastuh dah siap, i tunggu mama pusing one more round n pick me up.. So cari2 la neuro building.. Tanya sana sini.. 


Finally we found it.. Ok, so i amik brg2 n check in to the ward.. Since takleh tunggu, mama had to do another round sbb kena tunggu i amik aisy pulak from the car.. Sian tok mama, pusing2.. Huhu 

So bila dah masuk.. Hmm.. Xde aircon.. kipas jauh... Errrmmm.. I plak jenis berpeluh sakan punyerr.. Adelah bawak fan kecik letak atas table.. Tp still doesnt help.. Takpelah, Sabar jer since its only one nite.. 


This is how the ward looks like. Agak small la compared to IP.. Masa admitted, Aisy demam.. Actually dia dah demam dua hari before but temperature up n down, up n down, so i gave him paracetamol (PCM), dia kejap ok kejap panas.. I told d nurse pasal fever dia, she said she wud consult d doctor.. 

So then anaes pun dtg, this is bcoz aisy kena sedation utk buat MRI..so kalau sedation biase takleh tidokan dia.. They will give GA which i mmg nak avoid lah kan.. Too much GA for him pun no good.. Baru x sampai dua bulan lepas kena GA dua hari brturut2 kan..  So anaes tanya n explain mcm2 but of course after so many experience of aisy masuk operation theatre, loghat nyer pun dah mcm expert la kan.. Siap doctor tuh tanya i, "r u in the medical line?" Hahahahah gelak besar i.. "Having a son in this condition would somehow make u an expert" i said.. She understood lah.. So i signed the papers and she went off.. Quite a sweet lady..

Then bila dah almost mlm, fever dia getting higher n higher.. No thanks to the warm environment..nurse kata "ohh,doctor suruh tuam je dulu".. Wth?? Hes been having temperature the whole day pun xnak bagi pcm jugak? Haihhh ok fine..Dah malam, aisy pun tido, with cool fever tepek sana sini.. And i keep on tuam kepala n badan dia.. Dia tido tp skit2 merengek..tau la kan budak kalau demam camne..sian dia x cukup rest..


Ketiak kena tepek dgn cool fever.. Huhu

Kat sini they dont provide katil untuk us mommies.. Kitaorg disuruh utk tido sekatil dgn anak.. Sbb space nyer x cukup katanyer.. Tp ade gak parents yg nak bagi space kat anak dia, x selesa tido berhimpit..kesian i tgk.. Dah la letih pale otak.. Letih badan plak..


Mlm tuh mmg sgt x selesa, biaselah bila tido sekatil, kita try not to move sbb takut ganggu dia tido.. Lagi2 bila dia tgh demam.. So dapatlah tdo dalam dua jam.. In my own sweat.. Rambut dah lencun.. Haihh.. Sabar2.. Xpe2.. 

And the morning comes.. They said aisy first case.. So aisy bangun nangis2 coz lapar.. Dia kena puasa from 2am.. They took him into bilik rawatan utk masukkan line kat tangan.. Mmg i dgr jeritan batinku dia lah the whole time..

After that diaorg pass kat i chloral hydrate utk bagi kat aisy orally.. So that he sleeps by the time smp sana.. So i ingat kita tunggu ambulance to bring to the MRI centre.. Rupa2nya kena jalan sampai sana ikut lorong2 staff.. Gituuu kauuu.. Jauhhh kott..i pun trkejar2 la staff nurse yang tolak aisy.. Laju gila diaorg jalan.. Huff huff huff... Nasib baik x sompuit.. Heehe akhirnya sampai.. So bla bla bla.. Semuanya selesai..



Alhamdulillah.. Tapi diaorg kena add onn mida punya sedation.. Sbb dia dah trbgn masa baru nak start MRI.. And so everything went well.. Hubby dtg aroud noon.. So tunggu aisy bangun from sedation and menyusu tanpa muntah..


And about 3pm, we were released from the hospital..yeayy finally!! Balik rumah.. I yg lagi relief sebenarnya huahuahua.. Ok, see u in next post people! 



Wednesday 18 December 2013

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..


 

Wednesday 27 November 2013

Rendang Tak Berbuah..

Pernah dengar tak lagu Hattan, Rendang tak berbuah?

Lirik dia macam kat bawah ni..

 

Sunyi dan gelap

Terlantar dalam telanjang

Di pintu rindu

Hidup dan matiku disisiku

 

Sakit yang datang

Menguji kasih dan sayang

Antara merenda semalam

Mungkin takkan berbuah

 

Hanya memenuhkan

Namun tidak mengenyangkan

Musafir lalu nan dahaga

Di jalan panas membara

 

Begitulah hakikatnya

Di mahligai kesakitan

Yang mengundang sahabat

Saudara jauh dekat

Menghembus nafas pilu

 

Ibu mengertilah

Aku sengsara

Lemas berendam airmata

Rendang kasihmu

Dalam gelora

Jadi rebutan selamanya

 

Berikanlah pengertian

Waktuku di hujung jalan

Berbicara bahasa tuhan

Yang penuh penyesalan

 

Manapun aku berlabuh

Pastinya untuk desamu

Biarpun tak bersubur

Biarlah tak tertangguh

Di telapak kakimu

Sakit kurasakan

Jadi peneman

Masa semalam yang silam..

 

Wanna know why I’m sharing this song? Lagu ni dari apa yang i tau, pasal orang yang sakit..tapi dia takleh nak meluahkan..lagi2 pada ibu dia.. dia nak bagitau derita dia.. tapi dia tak dapat...

Sebab tuh tiap2 kali Aisy buat chemotherapy or kena buat surgery.. watching him struggle through to survive.. mesti i teringat lagu ni.. sebab Aisy takleh cakap dia rasa sakit.. pedih.. pening .. he is still a baby.. my small little baby.. yang tak sepatutnya go through semua benda macam nie pun.. tapi Allah dah tentukan dia macam ni.. tapi i sebagai ibu dia..sedih.. sebab tak dapat nak share derita dia..apa yang dia rasa.. itu yang buat i terkilan..bila tengok dia mengamuk..menangis.. merengek.. i cuma boleh tanya, kenapa ni sayang..? tapi i tau i takkan dapat jawapan.. so bila terdengar lagu ni.. is aisy trying to tell me dia sakit? Dia derita? Dia sengsara ke?Ya Allah.. berikanlah aku kekuatan.. berikanlah anak aku kesihatan... berikanlah kami kebahgiaan bersama..



Susu Issue


Off from the usual topic.. just to share about Aisy’s susu issue.. The first 1 month and a half aisy minum breast milk.. but somehow dah takde rezeki, susu makin lama makin takde, and being a baby boy, demand kuat la kan..so have to top up with formula milk..


at first we gave him the snow brand.. susu tuh hospital gave us few tins for free before we discharged masa beranak dia dulu.. at first dia mcm okay minum susu tuh but apparently he always muak (vomit a bit) after susu..


so we changed to lactogen.. Alhamdulillah he likes it and he was okay with it until he reached 3 months old, this is when poopoo dia turn green colour.. hmm okay..i read that its not so good la for babies to have green poop kan.. maybe too much vegetables content dlm lactogen kot..


so try tukar ke dutchbaby... at first cam okay..tapi lepas lima hari camtu...dia naik rashes satu badan..alahai kesian..


so tukarlah to novalac step 1.. actually kitaorg pernah bagi dia minum novalac awal2 dulu.. masa dpt free from clinic..dia mcm ok je dgn susu tuh.. so tuh yang decided to change to novalac.. Alhamdulillah..aisy mmg sgt sesuai with novalac step 1..sampailahh dia reach one year old baru2 ni.. coz kitaorg kenalah beli novalac step 2 kan.. for 1-5 yrs old.. apparently after seminggu minum novalac step 2 ni.. poopoo dia keras..dah macam tahi kambing dah.. alahai keshian.. tapi he doesn’t cry when he poops.. Cuma kita tau la if tahi keras sure sakit gak kan.. so since kita dah beli dua tin 800gm novalac step 2 tuh, we just finish it up lah... so fikir fikir..nak tukar susu ape pulak ek.. hmm.. anmum ke? Enfagrow ke? Mamil ke? Pediasure? I pun x sure..hehehe


After looking around..we decided to go with enfagrow A+ step 3(original).. at first we campur novalac n enfagrow just to make the transition to smooth la, coz takut aisy taknak terima pulak enfagrow if so sudden kan.. plus kita nak tgk dia allergic ke tidak to enfagrow..takut jadi mcm masa tukar dutchbaby tuh..so masa seminggu campur tuh, poopoo dia masih mcm tahi kambing, bulat2.. so i stopped and sambung enfagrow sahaja.. so far Alhamdulillah his poop mcm clay tapi taklah bulat2 keras.. but we still have to monitor lah.. if okay..then we just continue lah..

But if u ask my opinion.. lain baby lain penerimaan susu tau..so orang boleh nasihat kita bagai nak rak tapi kalau anak kita tak sesuai.. what can we say kan?? It might be okay for one person but not okay for another.. tuh jer...sama la macam growth.. lain anak, lain la skill dia develop.. ada yg jalan dulu..ada yg ckp dulu.. lain2.. so jgn pressure.. as long as anak healthy and happy.. tuh yg penting..

(Aisy so happy when his grandma present him his favourite cartoon character)

Tuesday 26 November 2013

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..



 

 

Monday 25 November 2013

Aisy got to celebrate his 1st birthday!

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

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


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


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








Wednesday 20 November 2013

Chemoport removal and re-insertion

Salaam all.. sorry ive been quite busy handling life as it comes.. okay, so to continue the last entry.. Alhamdulillah the next day (29 October 2013) aisy recovered fully from the general anaesthetic (GA)..

Datuk came to visit and said that aisy is to do an ultrasound today because they want to see his jugular veins at his neck for chemoport re-insertion.. it turns out diaorg nak remove chemoport yang dah rosak ni and insert a new one..hmm... nape nak kena insert new one since kita tak tau pun result ct scan dia lagi.. what if he doesn’t need anymore chemo after this? I tanya Datuk, but he gave an answer yang tak clear tapi indicate that mcm dia dah tgk the ct scan result, so looks like aisy needs more chemo lah.. but Datuk tak discuss lebih dgn i because itu kena tunggu oncology yang explain.. hmm okay.. if he says so, takpelah.. sebab i pun taknak aisy asyik keluar masuk surgery jer. So sekali jalan jelah.. buang chemo port lama n pasang baru at the same time..

Tapi ape2 pun kena buat ultrasound dulu sebab nak tengok saluran darah dia okay ke tidak.. diaorg nak tau nak pasang port baru tuh kat mana..kiri or kanan..

Tunggu punya tunggu.. dah tengah hari..hmmm..bila nak buat ultrasound ni? 

Tunggu...tungguu... tunggu... dah kul 3pm.. hadoii.. nie dah kali ke berapa i tanya nurse and doctor bila diaorg nak panggil aisy to do ultrasound.. so they checked with the people kat tempat tuh, they said they have received the request, Cuma kena turn jer since ramai yang nak scan harituh.. oklahh.. my only concern is that tempat scan tuh tutup kul 5pm..and its already 430pm.. malas la nak tunda benda tuh and do nothing the whole day... 445pm barulahh diaorg panggil.. fuhh..nasib baik.. so we went.. aisy mcm biasa lah..meronta2 nangis bila kena restrain.. nangis sampai tertido..sian dia.. so diaorg tengok, it looks like the right side mcm tak brape elok sebab damaged by the previous chemoport kat situ dulu.. so they said maybe letak port baru kat tempat sama (which is on the left chest) tapi tube maybe masuk melalui area kat pelvis dia.. hahh??? Melalui pelvis?? Biar betul?? Messed up betul saluran darah anak aku? Ya Allah..permudahkanlah...

So the ultrasound was done..tunggu ajelah esok untuk surgery.. aisy surgery pukul 3pm.. wahh tak pernah2 dia surgery petang..selama ni dia mesti first case or second case..pagi2 dah buat.. but now that dia dah older.. jadi la case kelima atau keenam..shian dia..so kena puasa start pukul 9am.. oh and he had fever so his surgery might be cancelled.. aduhaii i really hope not.. so i mandikan dia n all that to bring his temperature down..Datuk kata if by afternoon dia still fever, then we cancel the surgery.. no no no.. jgnlah tunda2..tuam lah pale dia..ketiak dia..blakang dia.. and left him naked biar sejuk skit.. then bila tgh hari, nurse check temperature.. Alhamdulillah.. 37.2.. yeayy.. lega sangat aisy dah tak demam n can proceed with surgery..


Hmm bila tgh hari dah mula lapar.. nangis nangis nangis...sampai tertidur.. tak larat dah.. alahai anak ibu..

Then around 1pm.. nurse suruh packing2 n siap2 untuk pegi operation theatre.. now the OT kat paediatric is under renovation, so kena guna OT kat main building.. kenalah naik ambulance to go there.. then about 145pm..kitaorg sampai the main building.. suka aisy naik ambulance heheh.. then i had to wear all the surgery clothing n what not.. pastuh tunggu at the waiting area.. aisy ngamuk2..nak tido.. nak susu.. alahai..finally berjaya to calm him down and bagi dia tido.. after sejam tunggu.. around 245pm baru diaorg panggil masuk.. okay.. masa sudah time.. they put him down..i kissed him goodbye and left the OT.. Ya Allah selamatkanlah anak aku.. permudahkanlah segala urusan..

4.40pm.. Mama aisy??? Eh..dah siap ke? Alhamdulillah.. i tunggu sampai tertidur kat waiting area.. so i rushed to go and see him.. Alhamdulillah anak ibu okay.. and thank God..they managed to insert port n tube baru kat tempat yg sama (kiri) and takyah nak masuk tube kat pelvic and all that.. syukur Ya Allah..

So i carried him in my arms and waited for the ambulance to come.. his tok mama tengah tunggu kat ward.. around 5pm plus ambulance datang..

Sampai ward, jumpa my mom.. and aisy main kejap dgn tok mama dia n went to sleep...still drowsy from the GA..

Doctor came n said if everything is okay..esok boleh balik but have to see the oncology doctor first before getting discharged..

Oh yeah..this time around ayah aisy cannot take turn to jaga aisy at hospital coz he has got a new job.. so tak boleh la nak cuti2 lagi.. so i took charge lah hehe.. then suddenly i demam pulak.. badan seram sejuk.. so mintak tolong my sis in law to stay over jaga aisy for that nite.

The next morning, i went to the hospital..then my sis in law left for her class.. Alhamdulillah aisy okay..but his fever datang balik.. kesian dia..so since takleh mandi coz baru surgery.. asyik lap badan jelah.. then around 5pm.. agak lambat lah.. oncology doctor pun dtg..and my mom pun dah datang..he said just come for aisy punya appointment with onco clinic lah seperti yang dah plan tuh.. his appointment is on 20th November 2013.. so oklah.. since demam aisy pun dah surut, boleh balik dulu.... pastuh tunggu punya tunggu.. dah kul 7pm nih.. nape nurse tak bagi lagi discharge note semua? Then tanya diaorg..katanya diaorg tak dpt instruction pun pasal nak discharge kan kitaorg.. aikkk.. bukan datuk dah kata ke? Alahaiii.. medical officer tak habaq lah tuh.. and now kena tunggu doctor yg on call untuk dtg and discharge us..


 tunggu punya tunggu.. Maid i pun dah bohsan tahap gaban tunggu heheheh.. doctor came around 9pm plus.. mak aihh lambatnya.. so we left almost 10pm..balik umah..where ayah aisy is waiting..so aisy dapatlah lepas rindu to his ayah.. eventho ayahnyer datang everynite after work, tak sempat nak play pun sebab aisy is usually knocked out cold.. and so.. all is well insyaallah..tunggulah 20th November 2013..


By the way, 3rd november ni is aisy's first bday.. So kitaorg dah plan dah celebrate on the 2nd nov dah lama dah but suddenly when this happened, kena put on hold dulu.. So since on 31st oct aisy dah discharge, boleh la continue with d plan , alhamdulillah.. 

Monday 28 October 2013

Chemoport Catheter Removal

Today aisy just underwent the procedure to remove the catheter of his chemoport yg tercabut tuh.. 


The specialist says it usually takes 30mins to 1 hour but aisy went in at 2.30pm and came out from the room at 4.45pm.. The specialist apologised to me n hubby and showed us the whole process of the procedure taken from xray images.. Dia tunjuk that dia cucuk sana cucuk sini cucuk sana n cucuk sini baru dapat the catheter tube.. So aisy ade some minor internal bleeding bcoz of that.. Im juz glad its over and that the tube didnt reach his heart.. And the doctor was so nice.. He said, "im so happy that i could help ur child today".. Aww.. How sweet.. N he thanked us instead of kitaorg yg berterima kasih pada dia.. 


So then aisy was brought back to the ward by an ambulance.. Surprisingly he was still high after 4hours procedure tuh finish.. Usually lepas 30mins nap dia dah ok dah.. But this time, he vomitted his milk and he slept for so long.. I am quite worried.. Is is his age factor or sbb terlebih dose of general anaesthetic?? Hmm actually as im writing this, he is still sleeping.. He woke up at 8pm juz now for milk and finished 6oz of milk n didnt vomit.. Thank God.. Hopefully he will fully recover tomorrow.. Surgeon has some plans for him tomorrow.. Still dunno what it is.. So, till we meet again.. 

Sunday 27 October 2013

Emergency

Hmm.. Ape la nasib anakku.. Ayah aisy dapat rasa sesuatu menyucuk keluar dari dada dia, near his chemoport.. hmm suspect mcm sumthing wrong je ni.. thats why masa hari ct scan tuh, doctor xleh nak flush chemoport dia.. so check chemoport dia semlm kat onco ward.. Doctor suruh buat xray.. Skejap je xray.. Then tgk results, hmm mmg ramalanku benar belaka.. Tube yg sambung kat chemoport tuh dah putus.. Team surgical datang tgk, they said tube tu dah masuk dlm saluran darah.. 

So here we r today, admitted at the surgical ward.. Tgh tunggu turn to do immediate surgery.. Surgeon kata kena buat before the tube goes to his heart an into his lungs..Ya Allah.. U constantly remind me... 

However, surgeon takleh buat sbb tube tuh dah masuk dalam sangat. Hence, intervention radiologist will take over and do the procedure.. 

Its 12.50pm now.. Aisy last susu at 6.00am..nangis sampai tertido.. Lapar.. Haihhh.. Kesian anak ibu.. 


Thats all for now.. Will update once he has finished surgery.. Please pray for him.. Thank u..

Tuesday 22 October 2013

Aisy's Assessment

21st October 2013... kitaorg bawak Aisy untuk ct scan... as mentioned in my previous entry.. ini adalah untuk assess progress cancer cells dia.. tapi hari ni scan jer.. results cuma boleh tahu 20th November 2013.. lambat nawww.. bila dah tau results..then only kita tau whether aisy dah cancer-free or kena continue treatment.. readers, tolong lah kami and doakan supaya Aisy cancer-free and no more treatments for the rest of his life... tak sanggup dah nak tengok Aisy membesar kat hospital..


After the procedure... Shian dia penat sangat.. Coz we also flush his chemoport but there was some problem with it.. So kena cucuk brulang ulang kali.. Nangis sampai tarik.. Sian anak ibu.. 


This coming sunday have to bring him back to HKL to check his chemoport.. Haihhh.. Hopefully all is well.. 

Wednesday 16 October 2013

Aisy's Raya Aidiladha

Someone was really happy n excited to have many relatives visiting during aidiladha.. He was so excited that he forgot to sleep hahahaha... So far alhamdulillah aisy is doing well n great.. Despite having d flu and cough a week after discharge harituh.. But now after dah makan antibiotic for about a week.. Hes much better... So next week on 21st october would be his ct scan appointment.. Hopefully all goes well.. I pray everyday for him to be cancer-free for d rest of his life.. No more chemo.. No more treatments..may God show him mercy.. 

So anyway.. Here are some pics during aidiladha.. 



Wednesday 2 October 2013

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..

Tuesday 1 October 2013

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!