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.. 

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.. 

First Admission to the Oncology Ward (Cancer Ward)

19 June 2013.. first time masuk ward oncology..these past few weeks, i thought my son was having the worst disease, neuroblastoma.. lemme share with u the description and stages for further understanding..

Cancer begins when normal cells change and grow uncontrollably, forming a mass called a tumour. A tumour can be benign (noncancerous) or malignant (cancerous, meaning it can spread to other parts of the body). Neuroblastoma is a solid cancerous tumour that begins in the nerve cells of infants and young children. It can start in the nerve tissue near the spine in the neck, chest, abdomen, or pelvis, but it most often begins in the adrenal glands. The adrenal glands are located on top of both kidneys and make hormones that help control body functions, such as heart rate and blood pressure.

Neuroblasts are immature nerve cells found in unborn babies. Normal neuroblasts mature into nerve cells or adrenal medulla cells (cells found in the center of the adrenal gland). A neuroblast that does not mature properly can continue to grow, leading to neuroblastoma. However, babies are sometimes born with small clusters of neuroblasts that eventually mature into nerve cells and do not become cancer.

Neuroblastoma develops most often in infants and children younger than five. It can form before the baby is born and can sometimes be found during a prenatal (before birth) ultrasound. Most often, however, neuroblastoma is found after the cancer has spread to other parts of the body, such as the lymph nodes (tiny, bean-shaped organs that help fight infection), liver, lungs, bones, and bone marrow (the spongy, red tissue in the inner part of large bones).

The following is a brief summary of each INSS stage:

Stage 1: The tumor can be removed completely during surgery. Lymph nodes removed during surgery may or may not contain cancer, but other lymph nodes near the tumor do not.

Stage 2A: The tumor is located only in the area it started and cannot be completely removed during surgery. Nearby lymph nodes do not contain cancer.

Stage 2B: The tumor is located only in the area where it started and may or may not be completely removed during surgery. Nearby lymph nodes contain cancer.

Stage 3: The tumor cannot be removed with surgery. It has spread to regional lymph nodes (lymph nodes near the tumor) or other areas near the tumor, but not to other parts of the body.

Stage 4S: The original tumor is located only where it started (as in stage 1, 2A, or 2B), and it has spread only to the skin, liver, and/or bone marrow (in infants younger than one). The spread to the bone marrow is minimal (usually less than 10% of cells examined show cancer).

Stage 4: The original tumor has spread to distant lymph nodes (lymph nodes in other parts of the body), bones, bone marrow, liver, skin, and/or other organs (except for those listed in stage 4S,above).

Ini some of the information that i could share..u boleh do ur own research if u like.. dia macam ni.. kalau stage 1,2 or 4s.. memang selamat lah.. means the cancer is in save stage.. stage 3 tuh is worrying lah.. stage 4, of course u all know la kan... stage 4s tuh is actually yang paling selamat in my understanding sebab tak perlu treatment or surgery.. cuma observe dan buat check up every other month jer.. so hubby and i memang harap aisy cuma stage 4s..

So on our first day of admission kat onco ward tuh, memang rasa terkejut sangat sebab tengok all the children there yang serba botak.. kurus.. lesu.. walaupun ade yang ceria jugak tapi this is a whole new thing to us.. memang in my entire life.. this image is like a new picture that i have never seen and never even thought about.. hubby tengok i..i tengok dia.. Ya Allah.. sangat menyayat hati..

Ok..dah dapat bilik and katil.. ward onco lain dari ward surgical.. ward onco ade bilik untuk 4 katil and semua ber-aircond.. i guess maybe sebab budak2 ni buat chemo.. so mestilah kena sejuk kan since chemo tuh sangat panas..

Jadi kitaorg pun tunggu doctor datang.. who came around 11am kot.. shes one of the specialist kat situ.. she checked on Aisy and said that Aisy could be a stage 4s since he doesn’t show any bad signs and he is cheerful (hubby n i dah tersangat happy with this possibility!!). So they’re gonna do the BMA untuk tengok staging.. ok dia macam ni.. untuk buat staging takes a lot of tests and scan sebenarnya... BMA, MIBG scan, CT scan, MRI, bone scan dan macam2 lagi.. masa time ni kitaorg tak tahu pun.. kitaorg ingat lepas buat BMA tuh.. terus dah boleh tau exactly staging nyer mcm mane.. biaselah.. first timer..

Then bila petang skit.. ada skin biopsy experts datang jumpa kitaorg sebab doctor onco informed them of dia punya nodule yang kat left chest tuh.. remember i told u guys bout this? If u’re not sure, u can check my entry entitled “when we first felt it”. So they also wanted to do a biopsy on that lump jugak but when they checked, apparently benda tuh is not skin deep.. it is deeper than that.. so instead doctors decided to do a biopsy excision..bermaksud they take out the whole thing instead of amik sample jer.. and study the lump.. so we said okay since kitaorg pun nak tau ape kat dada dia tuh.. and its better to just take out the whole thing kann..buatpe nak tinggal2.. since benda tuh pun benda foreign..

So the next day arrived.. aisy macam biase lah..kena puasa from 3am.. then kul 9am pegi dewan bedah.. this time ayah aisy pulak yg teman aisy masuk dalam.. he was again given the general anaesthetic (GA) for the procedure.. kali ni kurang risau sebab dah tau yg dia tak allergic pada GA kan.. but still worried of course.. anak masuk OT.. sape yg tak risau.. so tunggu ayah dia keluar dari OT room.. tetiba i saw him coming out bursting in tears.. alahai.. i immediately hugged him.. and he cried n cried.. of course i pun nangis lah.. sebab boleh dapat rasa kesedihan yg sama.. Especially when i see my strong hubby nangis.. and dia plak bukan jenis yg nangis.. lagi la i sedih tengok.. then after a while, dia pun calm down.. then we chatted and prayed aisy okay kat dalam tuh.. hati tenang sikit daripada the first time but still... dup dap dup dap jantung.. nervous.. risau.. then i think about 12pm dah settle semuanya.. wahh cepatnya.. aisy pun stable.. Alhamdulillah.. thank you Ya Allah.. so bawak la dia balik ke ward.. bagi dia susu n then dia tido sebab masih high kena GA tuh.. then bila dia dah bangun.. segar je.. terus merangkak rangkak.. hehehe 

then about 3pm, doctor came.. tgk semua okay.. then dia kata boleh balik...huh?????? boleh balik??? Biar betul doctor nih.. baru je habis procedure kot?? But doctor dgn nonchalantly, cakap.. yea, why not? Since aisy okay jer.. hmm .. ape lagi.. terus packing n blah lerr hehehe.. as usual, we had to wait for the call next week to see what is in store for us..

The Detection

So you see.. the detection was by chance.. we were lucky enough to have followed our instincts.. kalau nak tunggu symptoms, memang takde lah sebab aisy tak tunjuk ape2 symptoms.. yang demam tuh biaselah baby demam, nak membesar kan? .. so we were blessed with the early detection.. or so we thought..

Monday morning, 10th June 2013, dah tercangak depan Institut Pediatrik, HKL.. we were referred to the surgical ward.. for those yg dah biasa dgn IP ni..mesti dah tau ward mane kan.. so pergi la register n whatnot.. ingatkan jumpa doctor jer..rupanya kena admitted terus..hmm ok, xpe.. nasib baik barang2 semua dah siap dlm kete.. so we were given a room at the back sebab kat depan semua dah penuh.. it is an open ward with no air conditioning, only ceiling fans.. but they provided extra standing fans for each bed, so it was not so bad.. so as we walked through the ward, memang sgt sedih sebab seeing small babies with all the wires around their bodies.. balut sana balut sini.. maklumlah, surgical ward kan.. so semua yg ade kt situ mmg akan atau sudah pun melalui surgery.. so we thought..oh, aisy will be going through surgery lah kot anytime soon..to get rid of the tumour..

Ok, dah sampai the room where we were given, hmm.. bilik berdua, aircond ade, memang comfy.. Alhamdulillah..rezeki untuk beginners hehehe.. yelah, for me, i mmg tak biase staying at govt hospital.. this is actually my first time.. itu pun not for me, but for my son.. hmm okay.. my hubby expert dah bab2 hosp govt nie.. so dia explain la kat i and taught me how to prepare myself with the service and procedure n whatnot... ok ok.. i boleh handle.. so i pun tekan la button kat dinding tuh, konon2 nak panggil missy.. rupa2nya benda tuh tak berzaman tak berfungsi.. kena panggil missy secara manual yer.. tapi kitaorg bilik paling hujung skali.. jauh dari counter missy.. hmm.. takpelah, tunggu jelah bila2 missy datang..

So we waited for the surgeon to come and check on us, also to review the ct scan films that we brought with us from Pjaya hosp. Lama jugak la nak tunggu, i think afternoon kot baru surgeon dtg.. then he came.. i saw his tag.. he was the head of surgeon..hes a Datuk..hmm ok.. nervous skejap.. then he reviewed the films and asked us about the findings in Pjaya hosp.. so i told him lah what the docs told us.. i also asked if it is possible for the mass to be just his tahi keras je?? He said a simple “no”..then he said.. “They could have done a better job with the scan.. hmm.. in my experience, i’m guessing it is neuroblastoma (cancer saraf)and not Wilm’s tumour but we will do a biopsy to actually know what it is..”..”but before that, we will do an ultrasound just to be sure of the size and location.” In my heart, i was actually hoping for it to be Wilm’s tumour because after Pjaya said it could be either or, i did my searching on the net and i think Wilm’s tumour is less complicated. But when he said it looks like neuroblastoma.. my heart shrank a lil bit.. 

Next day.. we did an ultrasound... it was quite long because the sonographers macam tak percaya jer bila tengok ultrasound tumour dia.. coz the tumour is like all over the place.. from one end to the other.. guess what? I was still hoping that it’s just his stool yang keras yg dia tak berry hahahah.. denial..i know.. but any mothers would have still hoped for the same..so i tanya the sonographer.. u rasa boleh jadi tak benda ni tahi keras dia je? Hahahahah he chuckled and said.. most likely tak.. ok fine.. i kena terima la kan..

After ultrasound sume dah selesai.. petang tuh, a doctor came and told us that they will be doing a biopsy and chemoport insertion for aisy the next day.. biopsy tuh oklah.. but chemoport insertion??? What on earth is that.. i know it’s got something to do with chemo tapi ape benda tuh? Then she explained that it is a port where they will tanam under patient punya skin.. so that bila buat chemotherapy, cucuk line kat situ sebab chemo takleh guna peripheral line (line kat tangan or kaki).. ohhhh i see.. but why nak letak cepat sangat? Kita tak tau pun aisy perlukan chemo ke tidak.. abihtuh, kalau dah buat biopsy nanti, tetiba aisy takyah buat chemo.. nak buang balik ke benda tuh? Bukannya benda kecik sebab it needs surgery to do it kan.. so i still tak puas hati kenape nak kena letak chemoport tuh cepat sangat.. nape taknak tunggu results dulu? Then doctor said.. because Datuk thinks its neuroblastoma.. so most probably it needs chemo.. i macam.. hebat sangat ke Datuk ni sampai boleh diagnose tanpa biopsy? Hmm.. tapi doctor tuh mmg mcm convinced la dgn sangkaan Datuk..ok.. so hubby n i pun terpaksa terima la dgn hati yg open..petang skit, anaesthesiologist pun datang.. dia explain pasal allergy terhadap general anaesthetic (GA) n all that.. sign release form etc..

So Wednesday is here.. sudah tiba masa untuk biopsy and chemoport insertion procedure.. i risau more on the GA reaction sebab it’s the first time for Aisy kan.. macam2 boleh jadi kalau ade bad allergic towards GA tau.. so mmg teramat risau..then about 9am.. we were called to the dewan bedah.. nervous.. cuak.. debor.. gigil.. first time kottt... so bila dah sampai, Medical Officer (MO) tuh tanya sape yg nak masuk.. so hubby and i looked at each other and we decided i yang masuk.. so pakai all the necessary things.. and bawak my baby masuk ke Operation Theatre (OT).. i kissed him nonstop while walking ke OT.. Then MO and anaes suruh i letak aisy on the warm thingy atas meja operation tuh.. so i did.. then they inserted the GA through his line kat tangan, then mata aisy terus naik ke atas.. Ya Allah.. detik yang sangat menakutkan dan merisaukan aku.. pastuh MO suruh i kiss him and leave the OT.. so i kissed him and told him that ibu and ayah will be waiting for him outside.. as i left.. i couldn’t hold my tears.. memang hancur hati bila keluar dari tempat tuh.. i masih lagi boleh rasa kepiluan yang genggam hati i at that moment.. i ran straight to hubby and he hugged me, cuba tenangkan hati i.. i nangis dalam nak dekat sejam kot.. pastuh bila dah reda.. try to doa dlm diam.. sambil sembang2 kosong with hubby just to get our minds off the anxiousness.

It is now 11.30am.. hmm lamanya.. .......12.30pm........ susah ke nak letak chemoport tuh?.........1.30pm... aihh, biar betul.. lamanya... 2.00pm.... “Aisy Ezkandar!”... nurse panggil from the Dewan Bedah.. berlari lintang pukang ibu n ayah ni heheheh.. then i pakai balik benda2 tuh sume and went in.. alahai..sedihnya tengok my baby boy tergelepek kat atas katil kat tempat recovery tuh.. merengek2 sebab lapar.. yelah.. puasa since 3am.. skang dah 2pm.. baby.. mestilah nangis.. so i held him..takut2 sangat sebab takut terpegang tempat yg diaorg buat surgery tuh.. i held him.. calm him down.. kissed him puas2.. Alhamdulillah.. anak ibu okay.. after about 15mins holding him, i switched places with my hubby.. to let him have the chance to see his son.. i know he doesn’t show that he is worried tahap gaban but deep inside.. i tau dia risau.. so i waited outside.. then about another 15mins after that, Aisy was brought back to the ward.. doctor said bagi air je dulu.. bagi sikit.. to see if he muntah or not.. i just terus gave him milk about 3oz.. then tengok dia okay jer.. i gave him another 3oz.. syukur sangat takde ape allergy or side effects after the minor surgery..the day ended well with our family visiting Aisy.. he was happy..

Thursday.. Datuk came.. and told us we could go home!!.. yiippeee.. bestnyer.. he will inform us of the results next week.. and tengoklah macam mane nanti.. ok.. so ape lagi.. packing2 ..vrroooommmm...pulanggg...