Hey there.. It’s me.. Cancer..

15 December 2015... Worst day for the year 2015... Tuhan je yang tahu betapa hancur nya hati ni... this was the day kitaorg pergi amik results MRI Aisy.. I never thought I would hear it again... Doctor said the cancer is back and active.. and it has spread and showing signs of spreading further.. but he said it is not so aggressive because it took one year from the last MRI for it to spread... he said the lymph nodes near the spine is swollen and melekat to each other.. and the tumour is blocking his right kidney punya output, so kidney sebelah kanan dah mula membengkak sebab ade halangan...

Doctor suggest buat immediate operation... tapi as we already know.. the operation is high risk... so the kind doctor gave us time untuk decide.. sebab Aisy tak symptomatic pun... xde tunjuk apa2 kesakitan or symptom pun.. so macam mana nak decide? Operation tuh can make him paralyse, brain damage, severe blood loss, major complications that could cause him to.... u know...

However, if tak buat operation, slowly mungkin dia punya kidney boleh damage lagi teruk, boleh develop symptom2 lain, cancer tuh boleh spread lagi ke tempat lain and worst case scenario, doctor kata, dia boleh paralyse.. sebab main tumour yang ade tuh dekat spine L2-L5 yang mengganggu pinggang ke bawah.

Sejak hari tuh... theres not a day that goes by yang I tak nangis... last week doctor N call tanya if we have decided anything.. i told him we need to sit down with the head surgeon first before deciding anything coz nak go thru all the details of the surgery IF we ever decided to go along with it..

So far Aisy is doing well.. masih main, makan, lompat2 like a normal kid.. pergi tadika macam biasa... life is good for him now...

I don’t know what to say.. I don’t know what to think.. I don’t know what i feel..

Hari2 tenung wajah dia.. tengok jer dia bila dia bermain... wondering apa nasib dia lepas ni... anakku.. yang sikit pun tak berdosa.. yang sikit pun tak bersalah... yang sikit pun taktau apa yang sedang berlaku pada dia...

Aku pasrah... Aku berserah... apa pun keputusan yang dibuat lepas ni bukanlah dari kami kerana itu semua ketentuan Ilahi.. semuanya daripada Dia.. kerana aku milik Dia.. anakku juga milik Dia... aku cuma mintak keredhaan, keteguhan iman dan ketabahan untuk menghadapi segala ketentuan, dugaan n ujian yang diberi...

Readers, please doakan untuk Aisy Ezkandar... semoga dia kembali sihat tanpa perlu mengharungi apa2 kesakitan dan kesengsaraan dan keluarga kami juga mendapat keberkatan dan kebaikan daripada dugaan ini...

Ibu berserah sayang... Although deep down, ibu sangat berharap Aisy dipinjamkan lama sikit kepada ibu... sebab ibu belum tahu macam mana nak hidup tanpa Aisy...

Aisy's MRI Scanxiety

Salaam n Heylo dear readers.. 

Please pray for Aisy.. He is having his MRI scan done this coming 1st december......n im having the scanxiety.. The paralyzing fear moms feel in a time period before MRIs and other scans. Time period fluctuates and depends on length of time from last scans and many other factors.

I find scanxiety hits when I am the most vulnerable. This is normally during the middle of the night like right now as im writing.. when sleep has yet to be found or I am suddenly jolted from sleep.. This is when I experience the panic attacks that cause my heart to stutter and a clammy sweat that no fan will cool. Scanxiety also hits us when our child is suddenly sick or something is out of the norm which i worry almost everyday about Aisy eventho it has never been made for public to see... Some call it Mom's Intuition, but for me it is much worse than that.

We suffer scanxiety because we have been on the other side of those scans when we never anticipated we would hear the words, "Your child has cancer." We know the reality that may not be this time, but it has been and it could be again.

Scanxiety is stronger than the faith of even the most devoted. It isn't because we don't have enough faith, but that Satan knows how to use our weaknesses and vulnerabilities to his advantage. He knows how to fill those cracks with doubts and fears.

I would love to say that now the MRIs and CT Scans are over n today I am past the scanxiety attack. But nope! Can't say that. Until I hear from the doctors the official all clear, the fear will remain! 

His results review will be on 15th december.. So i think i will journey thru half of this december with nail biting n sudden tears.. Not forgetting d panic attacks whilst driving.. But God is Great n God is Fair.. N hanya padaNya kita serahkan segalanya.. He knows best! But pls keep Aisy in ur prayers.. N hopefully the results would be that the tumour hasnt grown or by miracle, it has gotten smaller... Thank u n pls keep praying..

Luv,

Worried Mom

Birthday boy's oncology check up & ultrasound

Salaam n hello ualls... Guess what?? It's Aisy's birthday today!! Hihihi im sure im more excited than he is hahah we had a small intimate birthday party last weekend for him.. But today, is his appointment with the oncologist n also ultrasound scan.. However cheerful we are today.. Dr said the ultrasound showed an increase in the size of the tumour (again)... So i dunno whether to rely on it or not.. Sbb harituh pun camtu gak kan.. So Dr pun ckp, tunggu jelah MRI next month mcm mane.. Since 1st december is appointment MRI dia. So we'll see how..lets pray n hope this birthday boy gets to celebrate many2 more birthdays insyaallah .. 

He is a happy boy today singing birthday songs all day long hahahha .. Nak bgtau org hari ni birthday dia la tewww hahahah

And on his 3rd birthday, thought i'd share this poem i made for him..

Aisy sayang.. This is for u..

To my Little Fighter on his 3rd Birthday

 

3rd November 2012, was the day u were born,

1001 feelings juggled inside me,

To keep you safe, to myself I had sworn,

No harm would come to you, I’d guarantee.

 

But God had His own better plan,

I was shattered to pieces when they told me,

Hoping that they were wrong scan after scan,

And finally I accepted of what was meant to be.

 

You are my one & only, my baby,

They poked, cut and poisoned you,

And I watched as you grow weary,

All I could do was wipe my tears & your vomit on my shoe.

 

I’m glad those heartbreaking days are over,

Although I still worry everyday if “it” were to come back,

But for now, I’m enjoying my days with my lil survivor,

And I thank God everyday for cutting me some slack.

 

They said 5 years.

And now you’re 3.

Can’t afford to hold back the tears.

Knowing that you’re still with me.

 

- Written by Nina Ghouse, for my son, Aisy Ezkandar, Neuroblastoma Cancer Stage Four survivor. 

 

Latest update: Aisy turns 3

Salaam and hello dear readers... again my apologies for not being able to write for the past 8 months... there was some restructuring in the office, hence, workload just doubled and by the time i’m free.. dah penat nak write anything..

anyway.. my little fighter is doing well.. from February till now, aisy has had three neurosurgery appointments and three oncology appointments and a few ultrasound scans.. one of the ultrasounds mengatakan there has been some increase in size of his tumour.. tapi doctor takleh confirm coz masa tuh bukan specialist yang buat.. so we had to schedule another round of ultrasound dengan specialist... thankfully the specialist kata it was a false alarm.. howeverrrr... oncologist tak puas hati of course.. and our favourite Dr insisted to discuss with the head of onco and they have decided to have Aisy buat MRI this coming December... for the mean time, supplements yang i masih bagi pada aisy is the snake grass, 4Life transfer factor, habbatus sauda and apricot seed oil..

So far, physically Aisy has been nothing but active.. and sel-sel otak memang sgt2 bersambung.. things that he says make me laugh hari2... and semakin hari semakin manja dgn ibu.. hehehe..

This coming 3rd November Aisy ada oncology appointment and also another ultrasound scan.. and 3rd November is also Aisy’s 3rdbirthday insyaallah..

So pls pls doa that all his scans tidak menunjukkan apa2 increment pada tumour dia yer.. doakan semoga Aisy sihat sepenuhnya dan dipanjangkan umur.. thank u thank u dear readers.. may God bless u and ur family with happiness n health! amin..

meh ibu blanja gambar aisy yg latest yer..

  

AISY’S DRAMATIC MRI SESSION 2015

Hello dear readers, firstly I would like to apologise for being silent for almost 3 months.. it has been quite hectic for me at work and at home.

So here’s an update of what has been going on with Aisy... on 26thJanuary 2015 we got him admitted to HKL at the Neurosurgery Ward for his MRI.. if it were conducted under institute pediatrik tak payah overnight pun. Just come for the day jer but neurosurgery punya procedure lain, kena admitted and stay over a night for the following day punya MRI.. Aisy is now 2 years 3 months.. and u know la what they say about toddlers being two years of age right? So yeah Aisy doesn’t know how to sit still, not even for 5 minutes.. hubby and i are glad for he is active but worn out bila asyik nak kena kejar jer huhuhu...

So anyway... we didn’t have the admission form, we only had the letter they sent us few months back informing us of the MRI date. So kena lah pegi ward, amik admission form, then drive back to the emergency area to register... after almost one hour of waiting to register, and hubby kena pusing hkl tak tau brape round hehehe sian dia.. kitaorg decided to go for breakfast first because bukan nak rushing pun masuk ward since the MRI is the next day kan... so masa nak pergi breakfast, ade lah drama suami isteri... nangis2.. bla bla bla hahahhaa anyway... lepastuh we went to the ward..

So they put us in this one room with empty beds and kitaorg jer dalam tuh, so lega la sikit sebab takde org kan... well at first i thought la... N this is aisy mengenang nasib hehehe

then suddenly they moved us to the next room yg dah penuh coz there was one empty bed.. then tak sampai 5minutes. Moved us to another room... the old room where we used to stay the last time.. uuurrrghhhh... angkut lah brg2 lagi... i was quite pissed la tapi sabor jelah...

So we waited...... n waited.... n waited.... then i asked the nurse.. is there anything that we r supposed to do here? She said oh wait, let me check kul brape MRI dia esok... then she said oh ok, hari ni tak buat ape2 bcoz his MRI is at 1.00pm tomorrow. So nak check darah and masuk line semua buat esok pagi.... and i’m like ???!!!!!... so uall suruh kitaorg masuk pagi2 untuk TAK buat ape2 lah ek? When i told hubby, dia lagi bengang... so we asked when is the doctor coming coz kitaorg nak balik... like seriously, duduk tak buat ape dgn aisy duk ngamuk2 nak ke sana sini.. lari2 dlm ward..jerit2... while the other neuro ward patients terlantar atas katil with tubes coming out of the heads... kesian diaorg... 

So we waited n waited again... for the doctor... he’s in surgery, so kena lah tunggu... aisy and ayahnyer dah pegi tido kat kereta sebab aisy dah takleh nak duduk dlm ward dah...then i think around 5pm.. the doctor came... so i call hubby suh masuk balik ward... then after doctor asked me few questions.. i said to him, “i have a request.. can we go home..since theres nothing to do here today and we’ll come back first thing in the morning tomorrow around 7am..?” he called his boss and he said okay, we can go...dia ckp kalau awal2 dia tau kitaorg nak balik, he would have let us go earlier... hmmmmm anywayyyy a whole day is wasted doing nothing ... great...

Morning of 27 January 2015.... kul 7pagi dah terpacak kat ward... around 9am... nurse suruh bawak aisy to the bilik rawatan nak cucuk tangan... of course ayah dial ah bawak, anak ayah kan... menjerit2..teriak abisss... ingatkan skejap jer macam kat institute pediatrik... but it took them like 20minutes!! Gila lama nak pasang line... he was crying for full 20minutes! Mula la hati ni geram.. then finally after dah siap... tgk aisy dah mula la nangis tarik2... tengok tangan dia dah bengkak2.. belah kiri belah kanan... banyak bekas needle poke yerrr... eeeee marahnyerrr ...kalau diaorg apologise and ckp elok2 takpe.. ni kerek2 plak... hubby ckp, dah lah, lepas ni xnak masuk ward ni lagi...

Then the time came for us to go to the MRI place.. i think it was around 11am kot.. aisy kena duduk atas stretcher to transfer him there.. mmg x larat la if ibu or ayah nak angkat dia and Jalan sejauh2 alam tuh... letak dia atas stretcher dia dah meraung2... sedih..trauma semua cukup... alahai anak ibu...

After a long fast walk to the MRI centre, aisy pun tertido lepas dah nangis2.. nasib baik dia tido sampai lah turn dia untuk masuk scanning... 

they gave him sedation... sekali x cukup... dua kali pun x cukup... kena tukar sedation kuat skit.. i don’t remember the name of the drug, all i remember is it was white in colour... terus konk out....

After about 40minutes, Alhamdulillah selesai semuanya... then we went back to the ward.. tapi aisy tak naik stretcher coz they had to use it for someone else.. aisy kena duduk atas ibu dia and ibu dia duduk atas wheelchair hahahah...first time i naik wheelchair... mmg segan dengan attendant yang tolak wheelchair tuh sebab dia sgt kurus dan saya sgt bam bam hahahahah...kesian kat dia... but no choice... coz aisy tengah lalok, xleh nak jalan or carry... and so... aisy pun recovered from the drugs...minum, makan macam2..lapar kesian.. puasa since pagi lah katakan... 

then later that evening we got discharged.... tunggulah 12 February 2015 for the MRI results... urat2 leher mula lah tegang..

.....................................

12 February 2015... 10a.m.... We went in to see the doctor... first he displayed the new films, then the old films to see the difference... 

“hmm.. it looks like there’s a change... it looks a bit bigger than the last one..” “duppp..!!” jantung sudah jatuh... then he took out a piece of paper that shows the lab results of the MRI.. the ACTUAL RESULTS!... dan dgn senang lenang doctor ckp, “oh but it says here, the tumour remains UNCHANGED...I’m sure they are right since they have the tools to measure it..” .....................like seriously??? Bagi jantung i jatuh tak pasal2, then say it’s unchanged? Haihhhh...xpe  xpe..syukur2...sabar2... then as usual la the doctors asked us about doing surgery on it n all that... then i told them our decision about not going into surgery remains UNCHANGED.

But of course.. the surgeon had to have his last words and said.. “Well alright then, but if the cancer spreads..it’s gonna spread fast”.............Well, thats only for God to know isn’t it?

Anyway.. despite the lil drama... hubby and i are truly thankful to God and to those who have prayed for Aisy’s well-being... We can never repay your kindness... THANK YOU!

For the children..

“It's the action, not the fruit of the action, that's important. You have to do the right thing. It may not be in your power, may not be in your time, that there'll be any fruit. But that doesn't mean you stop doing the right thing. You may never know what results come from your action. But if you do nothing, there will be no result.” 
― Mahatma Gandhi

 

Hey guys.. as u all know.. September was Childhood Cancer Awareness month… so hubby and I did some awareness campaign of our own.. I want to thank my friends & family who have helped and supported me in this campaign.. to my dearest hubby for believing in me and putting up with all these activities.. and also a million thanks for those out there who showed that our effort is not in vain by putting on the Gold Ribbon…  Jutaan terima kasih!!

These are pictures taken at The School, Jaya One on 21st September 2014 where we handed out the flyers n gold ribbon pins.. The management was very helpful, supportive n kind.. Tq guys!! 

These are pictures taken at Ruang @ Subang where we did the distribution on 28 Sept 2014. Million thanks to my good old fren, Adriana Thani for allowing us to conduct the campaign there.. Xoxo

And last but not least, my sweet sweet man took the streets and gave out the leaflets from house to house in the middle of the night.. While i wait in the car.. Admiring him from a distance heheh u can't really see him in this pic.. It was dark..

But the journey does not end there.. A lot more work needs to be done.. A lot more people to network with.. 

Many people say..

“Why are you doing this?”

“Do u think these small gestures gonna make any difference?”

“Do you think anyone would care?”

“This is Malaysia laa.. Malaysians don’t care what happens to others unless it happens to them”

Well, these statements did let me down but i keep telling myself..  “Lyn, u’ll never know when that one small step forward will make a big difference, so why not just take that step?”

 

"When the lives and the rights of children are at stake, there must be no silent witnesses." - Anonymous

Do you care?

WELCOME SEPTEMBER!

September is here and it is time to lock and load to spread the awareness times 10..! hehe many are still not aware about the very existence of CHILDHOOD CANCER. so this month, being Childhood Cancer Awareness month, we have decided to do our very own campaign.. since i asked the cancer association about them doing anything for this childhood cancer month..and they said theyre not doing anything.. not even one lousy campaign or at least announce it ke ape ke.. very disappointing.. so, i had to take matters into my own hand but at a small scale that is…it’s not much.. buat setakat mampu jer.. huhu.. so here it is, our leaflet!..

 

my dearest fren, Khidayah, helped out by designing the leaflet.. i just kumpul2 information from many sources… this is just to create awareness.. so our mission is to distribute the leaflets to public.. at malls or by the road or something… my fren also came up with the idea to give out gold ribbons.. so i decided to buat the gold ribbons and letak dekat leaflets tuh, so that distribute sekali harung.. hehe..so my fren and i memang cramp2 kaki la mengadap ribbons tuh.. hihihihi.. i beli the supplies at Nilai 3..  and here it is! All 300pcs of it.. the sakit pinggang was worth it lah hheheheh

 

 

Although sometimes i do feel like my fight and my effort is going nowhere.. Nobody seems to care.. No one bothers.. Why can’t we get the same funding from the government that the breast cancer patients get?? Is it a double standard or because if the public don’t care about it, why should the government care right??? So in the end, there isn’t going to be anyone trying to find a cure for it.. but hey, everyone has their own problem right?Isn’t that the answer for everything now? Well.. it is all up to you..Because it’s YOU who can make the change in this world.. it all starts with YOU.. and I have decided and trying my best to be the YOU in this cause… so please help us.. help our children..

 

AWARENESS = FUNDING = CURES!

 

Aku bukanlah seorang perwira,
Gagah menghunus senjata,
Namun hati rela berjuang ,
Walau dengan cara sendiri,
Demi cinta ini.

-Sudirman

 

 

Radio interview bersama Urban Youth FM

Alhamdulillah, dua hari lepas my hubby and I attended an interview at a streaming radio station called Urban Youth FM. Intention kitaorg accept the invitation is firstly untuk spread the childhood cancer awareness and secondly is to get some help from anyone listening like NGOs or government ke kan.. Our session was with DJ An in the Lets Borak session from 9.00p.m. sampailah 10.45p.m.. ingatkan lama, rupanya tak cukup rasanya nak cerita everything hehehe.. Hopefully usaha ni dapat memanfaatkan ramai orang dari segi knowledge and amal jariah.. and hopefully kitaorg dapat attract any parties yang nak menolong dari segi kewangan or research for all the childhood cancer patients.

I really have to thank Urban Youth FM especially DJ An & wife sebab provide kami platform untuk raise childhood cancer awareness. Harap2 GOLD ribbon ni boleh lah at least orang kenal walaupun tak famous macam PINK ribbon :)

Mungkin ini stepping stone untuk kami terus berkempen demi anak kami dan anak-anak cancer yang lain insyaallah.. Thank you for all the support! ;))