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)

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..

 

 

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.. 

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..