Tuesday 24 September 2013

MIBG Scan

Ape tuh MIBG scan?? Mula2 i pun taktau..but of course.. google la kan..

MIBG stands for meta-iodobenzylguanidine. Neuroblastoma cells take up (absorb) this protein, and when it is linked to a small amount of radioactive iodine, it can be used to find neuroblastoma in the bone, bone marrow, and other parts of the body. Because the child’s thyroid gland will also absorb radioactive iodine, regular iodine is taken by mouth for several days before the scan to protect the thyroid.

Apa itu I-131 MIBG?

Metaiodobenzylguanidine (MIBG) adalah suatu zat yang dapat berakumulasi di tumor neuroblastoma. Apabila MIBG ditempelkan dengan ubat radioaktif (I-131) maka akan dapat memberikan efek terapi dari energi radiasi beta yang dimiliki oleh I-131. I-131 MIBG ini berbentuk cairan jernih seperti air.

Say what?? Heheheh.. doctor suruh aisy buat mibg scan which is usually used to scan Neuroblastoma.. so on 26 August 2013, kitaorg bawak aisy ke HKL balik.. biaselah..masuk URH.. cucuk line, then drove to the radioterapi building.. kat sana.. diaorg inject isotope which is the radioactive substance yang akan masuk throughout his body for one week.. and during this time aisy tak boleh dekat dengan any children or pregnant ladies... quarantine lah seminggu...oh yeah, tiga hari sebelum kena injection ni, aisy diwajibkan minum lugol iodine untuk protect thyroid dia or something like that.. tiga hari sekali tiap2 hari kena minum..tak boleh miss tau.. then after dah cucuk the isotope on that day.. kita pun balik.. three days berturut2 lepas kena injection kena sambung minum lugol iodine tuh which kitaorg campur dalam susu aisy.. because tak sanggup bagi dia orally guna syringe sebab the smell and taste is so bad.. even pharmacist pun suruh letak dalam susu dia...

The hospital asked us to return to do the scan on wednesday..coz the radioactive substance tuh kena serap betul2 dalam badan dia...so we went on wednesday, he was sedated with chloral hydrate sebelum nak buat scan.. so bila dia dah knocked out..doctor pun buat la scan.. tiba2... another 20minutes left.. aisy dah bangun.. pusing and merangkak atas machine tuh.. astaghfirullah.. macam mane ni.. hmm looks like we have to come back tomorrow lah to do another scan..


Next day we came back.. this time ade doctor and nurse from URH ikut kitaorg ke tempat scan tuh.. coz doctor tuh nak sedate him with something stronger called mida.. sama macam masa MRI dia harituh..so Alhamdulillah he was knocked out throughout the whole scanning procedure.. after 1 hour plus.. dah abis scan.. the doctor in charge of the scanning suruh dtg lagi the next day... hadoiiii..whyyyy?? coz she said ade some parts nak tengok progress bla bla bla.. haiyaakk bohsannyer dgr sebab kesian aisy kena bangun kul 6am everyday.. takpelah.. esok last..gagahkan jua lah..


Next day..which is a friday..last day of the scanning.. as usual..sedated with mida.. after one hour plus.. settle!! Yeayyy... boleh balik..results?? as usual..tunggu diaorg call lah..then only we would know whether to continue chemo ke tidak..

 

Monday 23 September 2013

Recovery Period

Day 1 – So far he looks okay... dia kena puasa..means no milk for him at all..he is on morphine for the pain.. but i noticed that his urine bag is empty.. sampai malam dia tak kencing? I was really worried.. because the drip is going in tapi tak kencing.. takut air masuk lungs or kidney... alahai kenapa anak ibu ni... my guts is telling me that the catheter is blocked tapi doctor and nurse taknak percaya.. sampailah malam... when aisy dah makin kembang...kaki dah kembang and shining.. testicles aisy mmg dah bengkak macam nak meletup jer i tengok..then came the anaesthesiologist and told the nurse to flush the catheter to see whether benda tuh blocked ke tidak.. then bila nurse flush mmg aisy takleh lalu pun.. see!!! Ishhh.. sakitnya hati masa tuh... so this nice doctor came and replaced aisy’s catheter.. bila bukak jer catheter lama tuh..terpancut2 air kencing dia.. Ya Allah... kesiannyer aisy...mesti sakit sebab kencing tak dapat keluar kan...then bila dah tukar catheter baru.. he starts peeing...nampak dah urine bag dia ade kencing.. lega hati.. but still not enough according to the nurse’s calculation.. hadoiii... kenape ni aisy... i wish i knew what is going on with u... Tuhan jelah tau betapa runsing nyer kepala otak i masa tuh.. doctor said it takes time.. ok fine.. i kena sabar jelah..


Day 2 – He looks even worse.. still puasa..now muka pun dah start bengkak... kenape nie doctor?? Why is he getting worse?? Don’t you think you should reduce the drip that goes in..? after a few examination.. a doctor came and reduced his drip a bit.. ape diaorg ni... nak tunggu parents bersuara baru nak buat ke cam mane??? I know its saturday..semua nak cuti kan?? Tuh yang doctor pun tak nampak batang hidung.. dah nak petang baru nampak... Masa ni mmg teramat2 stress... i think if one notch up, my veins kat kepala boleh pecah kot.... last2 i went to the nurse station and asked them about the situation.. then they gave me a nice talk.. which made me feel so much better... diaorg kata usually after major surgery.. mmg the first two recovering days is the worst.. patients usually gets better after 4-5 days... ohh ye ke.. hmm.. lega la skit dgr.. so now just doa that he recovers fast n well.. malam tuh bila tgh tido.. tetiba i tersedar.. i looked at aisy..Ya Allah!!! Dia dah cabut tube yg masuk ke perut dia tuh.. aduhai anak.. kenapelah cabut..nanti nurse kena masukkan balik tube baru..nanti luka lagi laluan tuh.. of course lah, bila nurse memang masukkan new tube, menjerit sakan kesakitan lah dia.. haihh.. Ya Allah.. Kau permudahkanlah..


Day 3 – Alhamdulillah.. his urine counts is getting better and the urine is getting clearer.. happy sangat... and they have reduced the morphine lagi.. dia still kena puasa.. kesian sgt..all i can do is wet his lips sikit supaya tak kering n basahkan pacifier bagi dia isap, at least ade la sikit air masuk mulut.....so aisy is awake but still not moving much.. he must be in pain.. coz i know my son.. dia mmg takleh duduk diam if he is himself...hehe.. i miss running after him..


Day 4 – Morphine is off! Dia ade merengek2 sikit..still sakit i guess.. and also lapar..and dia still rimas dgn tube kat hidung dia tuh..tube perut dia tuh.. but he looks better.. dia dah start pusing sana pusing sini.. Alhamdulillah.. but still puasa..kesian anak ibu..sampailah tgh hari.. Datuk came and see him.. Datuk took out the tube that goes in his stomach and told us dia dah boleh minum... yeayyyyyy... syukur nyer tak terkata... so ape lagi..tunggu lagi?? Bagi dia 3oz air.. for your info, he hates plain water.. tapi kali ni..air 3oz habisss hehehehe.. kesian sgt tgk dia.. hubby n i teramat happy..


Day 5 – most of the wires are off except for the wires kat neck dia.. i insisted for them to cabut the wire kat neck tuh coz i saw like ade nanah nak develop kat situ.. dah tgh hari baru diaorg bukak.. my god.. i thought it was just a simple line at the neck vein..rupa2nya diaorg masukkan line ke main vein kat neck tuh..and then jahit kan line tuh dekat skin aisy so that benda tuh tak boleh tercabut.. ade empat Bahagian dia jahit kat skin aisy.. OMG!! No wonder la aisy menjerit2 bila nak cabut... aduhaii.. lepas dah cabut.. i brought him to the onco ward to flush his chemo port.. sebab chemo port ni kena flush once a month.. so it has been a month since his last chemo, so kena la flush..masa on the way.. i saw an Indian family.. mula2 dengar suara perempuan nangis.. then i saw a man keluar dari ICU.. family dia semua pegang dia..then suddenly he burst out crying for his son... Ya Allah... anak dia meninggal.. masa tuh.. i peluk aisy kuat2 n tak tahan sgt, trus nangis.. sedih sbb teringat that few days ago, i almost lost aisy... Malam, aisy fever sikit but not too high.. So just tuam jelah.. Lama2 temp dia pun turun.. Haihh nasib baik..


Day 6 – 21st august 2013.. Datuk came, saw aisy.. aisy punya testicles still bengkak but Datuk said it takes time to recover.. plus dia cirit birit which Datuk said will take at least one month to recover from that..hadoiii.. kesian aisy.. bontot dah terkeluar kulit dah.. so Datuk said aisy boleh discharge dah! Yeayy.. seronoknya dpt balik rumah.. aisy pun dah boleh berdiri n merangkak.. so senang hati la nak balik.. so we bid farewell to all the parents and patients kat ward tuh..and drove home..


Syukur padaMu Ya Allah...

 

Oh yea.. I forgot..

I forgot to inform u guys.. On 12 August 2013 during the event in my entry "the moment of truth".. We were informed that Aisy actually has Neuroblastoma stage 4... Mmg terkejut bila doctor announce dia sebenarnya stage 4.. Gigil bila terfikir kalau kitaorg tak bawak dia jumpa paediatrician masa dia tujuh bulan hari tuh, cam mane? Haihh... It could have been too late.. 

Menanti Hari Itu..

The day before the admission, my father came down from Penang, he wanted to see and spend time with aisy before he goes into surgery. As tough as it is for my father being a handicap, he made it to KL to see his grandson. Also to give me emotional support and assurance that Allah knows best..

So.. the day has come..Dengan hati yang konon2 cekal.. jiwa yang cuba ditabahkan.. kitaorg sampai di HKL about 10am.. aisy got admitted at the surgical ward on 14 August 2013.. hopefully semuanya okay sebab we are not used to the nurses at the surgical ward, so we don’t really know what it is going to be like.. kalau kat onco ward tuh dah biase and senang lah.. nak mintak tolong ape2 ke kan..

As we settled down.. my dad and sis came to visit and play with aisy.. also the surgeon came.. he explained again to us about the procedure.. the risk.. n the possible outcome.. he told us that they will have to reserve an ICU bed for aisy, then only they can proceed with surgery coz sometimes ICU penuh, if penuh means they have to postpone the surgery... coz usually after surgery, most children end up at the ICU...so oklah, i understand..he also showed us the ct scan results.. we saw that it was memang besar and nampak major blood vessels dia is in between the tumour.. Allahuakhbar.. his tumour is so big that it has pushed both kidneys to the side.. i saw my dad trying to withhold his tears tapi sebak dia tak tahan and i saw his tears rolling.. and so Datuk told us that the anaes will be coming later and then he left..

My sis n dad stayed sampai kenal halau hehe sebab dah lebih 2 jam dari allowed visiting hours.. heheh then about 4.30pm, they came again.. my dad’s flight back was that night, so dia nak spend time puas2 dgn cucu dia.. that was the time the anaes came.. she told us about the risk again.. and asked us to sign the release form untuk blood transfusion.. dia ckp.. “aisy punya operation ni memang akan perlu blood transfusion sebab major surgery kan.. tapi kena faham ye.. kita akan try untuk ganti darah dia sebanyak dan secepat mungkin tapi kalau kita tak boleh nak catch up dengan kehilangan darah dia, dia mungkin akan kena cardiac arrest (jantung berhenti)..and dia .. hmm.. he can die because of that..” anaes tuh ckp dengan rasa yg amat serba salah.. ..........hati i dah kebas dah rasanya.. i just gave her a nod..and signed the paper..


Then when the night came.. after my inlaws, my mom and hubby dah balik.. i just looked at aisy sleeping.. belai dia.. pegang dia.. cium dia.. bisik kat telinga dia..

“Aisy sayang.. ibu tahu anak ibu ni kuat.. ibu tahu Aisy boleh lawan cancer Aisy ni.. Ibu and ayah sayang sgt dekat aisy..ibu and ayah nak aisy membesar dengan sihat dan sempurna supaya aisy dapat jadi anak yg soleh dan bimbing ibu n ayah masuk ke jannah sayang..tapi Aisy.. kalau Aisy rasa terlalu berat untuk Aisy harungi..Aisy jangan tahan demi ibu n ayah ye sayang.. ibu n ayah faham kalau aisy terpaksa tinggalkan kami..ibu faham.. ibu tau yg aisy dah tak tertanggung lagi.. tapi aisy tunggu ibu n ayah kat syurga ye sayang.. aisy doakan ibu n ayah dari sana ye.. ibu cuma nak aisy tau yg ibu n ayah akan sentiasa berada di sisi aisy walau dlm apa jua keadaan sekali pun... we love u so much...”

..................................................................................................malam tuh, aku belajar macam mana nak sembahyangkan jenazah kanak-kanak lelaki... demi anak aku.. walaupun air mata tak berhenti, aku tegaskan jua jiwa ini untuk mempelajari ilmu itu..kerana jika Allah inginkan anakku di sisiNya, at least aku dapat memberi anak aku hadiah yang terakhir...


Inilah doaku dalam tiap2 hari...”Ya Allah Ya Tuhanku, Kau Maha Mengasihani, maka kasihanilah anak aku, sesungguhnya dia tidak berdosa Ya Allah.. Kau Maha Kuasa, maka tunjukkanlah KekuasaanMu dengan memberi belas kasihan kepada aku dan suamiku.. Ya Allah.. selamatkanlah anak aku.. hilangkanlah segala penyakit dan kesakitan yang ada pada dirinya.. Kau panjangkanlah umurnya supaya dia dapat membesar menjadi anak yang soleh yang sentiasa beribadat kepadaMu dan dapat membimbing hamba2Mu ke Jalan yg benar.. Tetapi Ya Allah, hanya Kau yang tahu apa yang terbaik untuk kami dan keluarga kami.. Jadi berikanlah kami sifat keredhaan dan kesabaran bagi mengharungi dugaanMu ini Ya Allah.. tanamlah keimanan dan ketaqwaan dalam jiwa ini supaya dapat terus beribadat kepadaMu dan berjumpa dengan anak kami di syrugaMu Ya Allah..”Amin........

15 August 2013.. hari penentuan..they told us that ICU bed tuh is available for aisy.. this means... they will proceed with the surgery...Ya Allah..permudahkanlah segalanya di dalam operation theatre itu Ya Allah...

Kul 7.30am Aisy dah bangun.. Hubby pun dah sampai dari rumah.. around 8.00am we gave aisy his bath.. tiga2 dalam toilet buat kecoh hehehe.. tau jelah.. equipment nak mandikan baby tak lengkap kat hospital tuh.. takde baby bath tub.. so kena la improvise..hahaha aisy memang loves his bath.. hmm..so dah abis mandi.. wangi2..pakai baju cantik2....8.30am....nurse datang... “Jom..OT dah panggil”...................................................................sambil nak angkat aisy and kemas2 skit barang kat katil tuh.. sambil menitis air mata yang tak mungkin dapat berhenti.. ade salah seorang ibu kepada patient kat situ dtg approach.. dia ckp.. sabar.. insyaallah takde ape2.. i just kept quiet.. and continued rearranging stuff kat atas katil tuh.. sebenarnya taktau ape yg dikemaskan pun.. just to delay time untuk ke OT je kot... then hubby pujuk and ajak pegi ke OT.. so i held aisy and hugged him tight and kissed him... then pass to hubby... dah sampai OT... i teman aisy masuk ke dalam... his ayah gave his last kiss...then i bawak dia masuk... theres a waiting area kat dlm dewan bedah tuh.. before we enter the OT.. so masa duduk kat situ.. aisy looked at me.. and smiled.. then suddenly he kissed my cheek... Ya Allah.... Jika itulah hakikatnya..ambillah aku..bagilah anak aku peluang untuk hidup Ya Allah... I hugged aisy and said..”Aisy... Aisy kena kuat tau.. Ibu tau aisy kuat... ibu and ayah tunggu aisy kat luar tau..aisy jangan pergi lagi ye sayang..ibu n ayah tunggu aisy..”. while i was talking, medical officer datang suruh masuk dlm OT.. before masuk, ramai doctors and nurses yang kerumun aisy..they all know aisy.. semua nak pegang dia.. nak cium dia.. maklumlah..ni kali yang kelima dia masuk OT..so mmg famous dah lah kat situ.. while semua tgh main2 dgn dia, one of the doctors in charge for his operation asked them to disperse as aisy needs to be taken to the OT..so semua pun wave bye-bye kat aisy... in the OT, as usual, i put aisy on the warm bed.. they gassed him down.. then i gave him the last kiss.. and i ckp..”ibu n ayah tunggu aisy kat luar yer sayang..be strong..assalamualaikum sayang”....


..............................................................................................rebah...i keluar dari dewan bedah and terus rebah... on my knees... and cried..... nyawa ni rasa macam nak tercabut.... lepas dah boleh berdiri.. i walked towards hubby.. dia tak nampak sebab dia duduk kat corner.. dia terus hug i... and i meraung....semua orang pandang...biarlah org pandang.. nyawa aku ade kat dalam OT tuh akan bertarung untuk hidup... istighfar... istighfar... tenangkan diri... baca surah yasin.. dan surah2 lain sementara tunggu....

About 10am... my aunty came.. dia pun duduk baca quran... doakan yg terbaik utk aisy.. about 11am..hubby’s aunty and grandma came.. pastuh my colleagues came to give emotional support.. at that time i felt a lil bit better.. ramai yg bagi support and kata2 semangat... in the afternoon.. my mom,sis and inlaws came.. after that hubby’s uncle came.. memang ramai berkampung kat depan dewan bedah tuh... it was about 2pm when i saw a doctor from the surgical ward lari ke dewan bedah bringing more blood for aisy... oh my god... whats going on?? Kenape ni?? Kenape dia lari2? Kenapa darah tak cukup?? Ya Allah..anak aku...

“Doctor!!” i stopped her kat depan dewan bedah tuh.. “Blood ni semua utk aisy ke? Knape bawak lagi? Yang tadi tak cukup ke? Kenape?” Then doctor tuh mcm taktau nak jwb mcm mane.. she said “oh tak.. ni untuk standby jer..dont worry”.. ohhh okay... lega skit tapi...btul ke? Is there something they are not telling me?

About 2.30pm hubby tried to find out something from the doctors kat OT coz it’s been 5 hours... then hubby came and told us that the tumour is still not out yet.. Ya Allah.. kenape susah sangat? Is it so complicated? Kepala otak ni mula la fikir yg bukan2.... tawakal..tawakal.. pastuh hubby and i keluar amik angin kejap.. then about 3.30pm we came back..baru nak minum air, suddenly Datuk (operating surgeon) came out and called us in.. ape lagi.. berlarilah hubby and i.. menggigil satu badan...

Semua family members berkumpul depan pintu dewan bedah, waiting for the result...

“Hmm..the surgery went well than i expected.. we managed to remove almost 100% of the tumour... no major blood vessels were damaged.. but hmm... “

Ya Allah...knape?? but what??

“His blood vessels to his testicles had to be sacrificed.. it was too stretched out because of the tumour..so we couldn’t save it.. he will have a problem bila dah kahwin nanti lah.. don’t worry..manhood dia still ade cuma sperm counts might be less..”

Ya Allah.... thank you Ya Allah... Thank you for saving my baby...

“This means he is doing okay Datuk?”

“Yes..he can go back to the ward.. he doesn’t need to go to ICU”..

Ya Allahhhhhhh.... aku sujud syukur padaMu atas pemberianMu ini Ya Allah... You answered my prayers...

Hubby shakes Datuk’s hands and thanked him for everything..”Oh yea Datuk, can we have a look at the tumour?”

“Yea sure”, Datuk replied.

Hubby and I hugged each other... and cried...

There it is.....



We showed to our family members who were standing outside... they were all shocked on how big it was... mmg sangat besar untuk baby umur 9 bulan.. We told them that Aisy is gonna be alright... semua nangis and hugged each other...

Sesungguhnya Engkau Maha Penyayang lagi Maha Mengasihani....

Later... After 6 long hours of surgery.. Aisy was brought back to the ward... looking at him in that condition just breaks my heart and soul into pieces... if only it was me...and not him... besar dugaan Kau pada kami Ya Allah..

 



Thursday 19 September 2013

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..


 

 

 

Wednesday 18 September 2013

Aisy Ezkandar’s First Raya Celebration

~Selamat hari raya~.. kepada saudara serta saudari...~~ wahh first time beraya bertiga.. huhuh.. eventho half hearted but happy to be with my family..happy beraya bertiga.. excited for aisy.. he doesn’t know it.. tapi ibu n ayah dia yg seronok tgk dia dapat duit raya banyak.. since my family is aware of his condition, memang melimpah ruah lah duit raya diaorg bagi.. Alhamdulillah rezeki.. it was a good celebration.. Aisy was really happy, excited n tired as well.. come sunday.. i had to pack everything for admission the next day.. taktau nak expect ape..so i just packed everything as how i always pack bila admit to hospital.. so our raya was only 4 days jelah.. lepastuh dah tak rasa dah.. huhu below are aisy’s pics during raya..



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..

Aisy's CT Scan

Early morning dah kena kejut Aisy bangun.. cian dia.. nangis bila kena kejut.. yelah..nak kena lap sikit, tukar baju and siap2 nak gi hospital.. usually i don’t bathe him sebab its too early in the morning.. kesian sejuk..

So dah siap2.. gerak pegi hospital.. macam biasa.. masuk URH.. n then naik shuttle pegi jabatan pengimejan diagnostic for ct scan.. sampai sana, hmm agak ramai orang but they prioritise babies because babies puasa..org dewasa takyah puasa coz they don’t have to be sedated..

Before we left to the scanning place, nurse ade bagi contrast fluid that aisy is suppose to drink.. dia campur skit dengan sugar water to make it drinkable.. its yellow fluorescent in colour.. dia letak dlm botol susu aisy for him to drink.. i remembered it was about 7oz.. banyak tuh.. but i thought since aisy puasa..mesti dia dahaga..so maybe boleh la minum benda tuh.. rupa2nya dia baru jer minum dua teguk, terus tolak..takmao.. sanggup dahaga n berlapar ni.. tak sedap la kot? Tapi nurse kata benda tuh rasa manis jer.. hmm.. maybe not up to his standard la kot hehehehe..so bila dah sampai kat tempat scanning tuh, sambung lah bagi dia minum lagi benda tuh.. sungguh2 takmao.. hmm.. how la? Nak tak nak, dia kena jugak minum benda tuh coz they need the contrast to be in him for the scan.. so minta syringe dgn nurse.. masukkan air tuh dlm syringe, n paksa masuk mulut aisy.. semua patient tengok aje aisy yg sedang terpekik terlolong takmao minum ubat tuh.. dah la kena buat banyak round sebab doctor kata dia kena minum benda tuh at least setengah botol.. hadoiii.. mmg kesian tgk aisy meronta2.. tapi demi kebaikan dia.. we still had to do it whether he likes it or not la kan.. so after dah settle.. we gave him chloral hydrate for sedation.. lama gak la nak knock out.. after 30mins of mengamuk baru dia tertido.. then ayah dia bwk masuk to the scanning room.. skejap je maybe around 20mins tak sampai kot.. habis.. dah selesai.. so balik la ke URH..settle everything.. n chao!! Oh before we paid the bills n all that, terjumpa actress Anzalna.. amboi aisy bukan main lagi..gatai.. dia tepuk2 nyer muka anzalna tuh coz he was excited hahahaha.. poor anzalna.. so oklah, made his day and maybe his ayah’s day? Hurrmmmm..hehehe..


So now.. we just wait for the suspenseful call from the doctor regarding his ct scan report............

Aisy’s 2nd cycle of chemo & chemoport re-insertion

17 July 2013..it was a wednesday.. masa tuh dah start bulan Ramadhan.. so kena la puasa kat hospital.. we got ourselves to IP in the afternoon.. registered and checked in to the onco ward as usual.. so pasang line..amik darah.. then the whole day takde procedure except for the anaesthesiologist datang and asked us to sign the release forms etc.. so aisy is set for tomorrow morning at 9am for chemoport re-insertion..harituh chemoport dia on the right.. tomorrow they will insert belah kiri pulak.. near his heart.. insyaallah hopefully everything will be fine..


So keesokan harinya, as usual, aisy kena puasa.. and we brought him to the dewan bedah.. about 3 hours later.. all is done.. Alhamdulillah all went well.. he was brought to the ward for recovery.. dah sedar.. dah boleh minum susu.. dah boleh main2.. they will start his chemo at 6pm on that day itself.. haihh risau sangat kalau dia demam ke ape .. tapi kali ni confident sikit sebab line yang diaorg pasang kat chemoport tuh diaorg buat dalam operation theatre (OT).. so OT memang bersih n sterile kan.. so i rasa confident skit lah.. cuma taktau aisy punya reaction towards chemo kali ni macam mane pulak.. chemo ni..mmg u xleh expect what’s gonna happen.. we just try our best to overcome jer.. maybe boleh prevent jugak kalau dah buat research..

So 1st day chemo..alhamdulillah okay.. 2nd day chemo badan panas skit tapi bila tuam2 skit.. dia okay.. 3rd day pun Alhamdulillah syukur sgt2 dia active and ceria!! Hubby n i sangat2 happy sebab Aisy sihat and takyah prolong stay kat hospital sebab tak larat nak berpuasa kat hospital..sayu pun ade gak..sahur nasi bungkus ade penderma yg bagi tiap2 hari.. berbuka dgn makanan hospital share dua orang dgn hubby huhu.. By the way, on the day before we got discharged, ade visitors dtg bearing gifts and balloons.. aisy was so excited with the balloons.. heheh seronok tgk dia engross main dgn balloons tuh.. hehehe... so hari ahad we got discharged!! Yiippeee..!! but before balik.. we were given a date for Aisy to do his ct scan on 29 July 2013.. hmm.. this scan will be the evaluation of his progress of reaction towards the chemo.. hmm sangat debar.. memang doa supaya benda tuh hilang dengan miracle nyer.. huhu.. cuak cuak cuak...



Tuesday 17 September 2013

Hair Loss..

Two weeks after the first chemo.. i dah start nampak rambut aisy gugur.. eventhough dari awal lagi dah tau benda ni akan terjadi.. still bila jadi betul2.. hancur hati rasanya.. walaupun its just hair.. and mmg akan tumbuh balik bila dah stop chemo.. but still.. hati seorg ibu.. tau jela kan.. mula2 skit jer.. pastuh makin lama makin banyak yg gugur.. memang kerjanya mengutip jelah kan..



Then few days after that, bila aisy bangun pagi, i tengok banyak gila rambut dalam mulut dia!!! I cepat2 korek keluar semua rambut.. rupanya atas katil dah penuh gila.. pastuh termasuk kat mulut sebab dia duk golek2, gesel2 kat bantal kan.. Ya Allah.. hmm ini xleh jadi ni.. nak taknak kena botakkan terus secepat mungkin.. takut dia tercekik ke ape ke kan.. so.. tgh hari tuh.. terus bawak gi barber..”mamak! kasi botak ini budak..”... “wokayy”.. hubby pegang aisy sambil mamak tuh shave it all off.. tapi tinggal tajam skit2 la.. still hari2 berikut2 nya.. yg rambut tajam2 tuh pun gugur.. until there was nothing left.. hmm.. xpelah.. nak sedapkan hati.. belikan aisy topi chomel2.. heheh




Evaluation Procedures- Bone Scan & MRI

On 8th July 2013, Aisy ade appointment to do a bone scan to see if the cancer has spread to his bones.. hati ni punya risau takyah cite la kan.. memang risau jer memanjang walaupun org tgk muka i relax jer.. mcm xde perasaan je kan.. but deep down inside only Allah and i know.. so if family or org lain nak kata i ni macam x kisah jer anak sakit.. or tak jaga anak betul2.. biarlah.. manusia mmg camtuh.. orang lain tak pernah betul di mata mereka.. yg penting pandangan Allah terhadap kita.. so anyway.. kitaorg register la for unit rawatan harian (URH).. so this is just to share with u guys about the procedures of bone scan and MRI kat IP HKL la.. so today bone scan, register..then masuk URH.. cucuk line kat tangan aisy.. pastuh nurse suruh naik shuttle van pergi ke jabatan radioterapi & onkologi.. okay.. so kami pun tunggu utk shuttle yg slalunya penuh la.. tapi takpelah..first time nak buat procedure yg kena keluar dari IP.. ok so xpe.. dah sampai sana.. bagi form.. tunggu diaorg panggil nama.. then bila dah panggil nama, pergi ke tempat menunggu kat area scan tuh.. okay.. so we waited until aisy’s name was called.. then the medical assistant kat situ inject aisy with a contrast.. pastuh dia kata kena tunggu 3 jam utk contrast tuh serap ke bones dia.. lahhh ye ke?? Lamanyer.. dah la aisy puasa.. confirm jap lagi ngamuk.. hadoi.. oklah 3 jam.. takkan nak tunggu je kat waiting area tuh kan? So we left and went jalan2 around that area.. after 3 hours, we came back.. aisy was given a sedative called chloral hydrate sbb taknak dia gerak during procedure.. so kena kasi tido la.. if children yg dah besar skit n boleh duduk diam, takyah lah sedative.. then the scanning takes about 20minutes.. parents boleh tunggu dlm bilik scan tuh.. then after that abis.. pulang ke URH.. cabut line.. and pulang!!



Then next day, 9th July 2013, aisy kena buat MRI plak.. so process is the same.. register.. tapi tak pegi URH..we went to our onco ward instead..sbb URH takleh buat petang or sumthing like dat la..i pun xtau nape.. cucuk line..then we travel to the jabatan pengimejan diagnostic or sumthing like that followed by two nurses and one doctor....then as usual..aisy has to puasa.. they gave him the same sedative tapi tak Jalan..so kena bagi sumthing stronger called midazolam i think.. then ayah dia bawak dia masuk to the MRI scanning room.. everything had to be taken out like watch, wallet, syiling and everything yg sewaktu dengannya.. i waited outside about 45minutes ke? I pun tak ingat.. byk sgt procedure sampai tak ingat yg mane, brape lama bagai.. so then dah abis.. as usual.. took a trip back to the ward.. cabut line.. and balik!! So this is our experience la doing all the procedures stated above.. so for the rest of the week, aisy boleh la rest at home before masuk balik hospital next week.. 😊

Just some thoughts of mine..

This month (July 2013) Aisy is 8 months.. wow dah sebulan berlalu..sekejap sangat rasa.. it felt like we missed seeing him grow up since banyak sangat treatment and procedures nak kena buat kat hospital..nak kena concentrate on him beating his cancer instead of helping him grow up.. eventhough dia mmg learn things at a different level.. far more advanced level which normal kids don’t have the chance to learn... i consider him to be lucky and special in his own way.. he gets to feel real compassion.. he gets to feel real pain which makes him stronger and more mature i think.. of course no parents would want their children to feel any pain or go thru any hardship tapi since hubby and i memang takde choice, we take in the positives jelah kan.. so kita nampak anak kita membesar dgn cara yg lain.. he would appreciate his playtime more bila dia ade kesempatan nak main sebelum masuk balik hospital.. he would behave better maybe.. tapi yg mmg obvious, he seems more matured than babies his own age.. mmg i tgk kat ward cancer tuh..budak2 kat situ mmg sgt lain drp budak2 biasa.. diaorg lagi pandai nak communicate.. lagi matured.. mmg lebih mcm org dewasa.. maybe because diaorg terpaksa cepat membesar disebabkan untuk memahami dan mengharungi penyakit yg diaorg ade.. takde time nak mengada2, nak demand toys ke..like any other kids.. it sounds sad but there’s a positive aspect in it.. for them.. they’re happy just to be alive.. 

Being at the oncology ward, mmg rasa sgt terkejut sebab kita tgk ramai lagi anak2 kecil yg lebih teruk dari anak kita.. masa mula2 dpt tau aisy ade cancer.. rasa macam masalah kita yg paling besar..paling teruk.. kira paling top lah.. tapi bila masuk sana.. Allah.. besar lagi dugaan Kau pada mereka yg lain ni.. tapi masih lagi terukir senyuman di wajah2 mak n ayah mereka.. anak2 itu pun masih lagi boleh ketawa.. apelah sangat utk aku bandingkan dugaan yg aku dapat.. itu yg membuat kita rasa bersyukur.. ade yg dah setahun masuk keluar ward tuh untuk treatment.. ade yg cuma tinggal skin and bones aje.. ade yg tiap2 hari buat treatment.. ade yg datang dari jauh.. Johor, Pahang, Sarawak, sabah, kedah... semua berusaha untuk berjuang.. berjuang untuk hidup.. bila teringat balik anak2 yg pernah hubby and i jumpa and sembang.. skarang dah pergi menghadap Ilahi.. sayu sgt rasa.. berlinangan air mata.. tapi banyak mana pun kita sayang anak kita.. kita tau Allah lagi sayang kat dia.. dan anak2 yang dah pergi, kita tau mereka dah dijanjikan syurga.. tapi hati tetap sayu melihat mak ayah mereka yang ditinggalkan..

Masa mula2 masuk ward tuh.. hati dah tak senang tgk keadaan sekeliling.. lebih2 lagi bila sampai waktu malam, ade seorang anak yg meninggal dunia setelah sekian lama suffer dengan cancer.. masa tuh.. jiwa ni dah tak boleh tahan.. sebab taktau nasib anak i macam mane.. mmg menangis tak sudah malam tuh.. hubby suruh i balik...biar dia yg jaga aisy malam tuh.. dari hospital sampai balik..sampai dah nak tidur kat umah pun..masih menangis.. sebab if anything were to happen to aisy, i belum ready untuk lepaskan dia..


Monday 16 September 2013

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..