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! 

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..