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. 

 

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

 

 

Chemo Port Removal Surgery

Alhamdulillah… after almost a year dah tak buat chemo.. akhirnya dapat jugak tarikh nak remove chemo port.. 22 August 2014.. so we r supposed to check in the day before because the surgery is at 9.00am.. i rasa takyah la cerita the whole process kot coz im sure u know the drill… ni gambar cik abg tgh usha doctor buatpe hahaha

but on 22nd August 2014… at 8.30am we were called by the OT to bring Aisy because they need him to be on standby because the patients before him dah almost done.. so we went.. i dunno why eventhough Aisy dah went through a lot of procedures..a lot of surgeries.. my heart still fills my throat when we are walking towards the operation theatre… i know it’s a simple surgery.. it’s a minor surgery.. but.. ntahlah…

So, we got dressed to go inside and waited at the waiting area.. Aisy was being Aisy la kan… slumber dia jer masuk ke OT Hall tuh.. and within seconds he was surrounded by most of the nurses, doctors n staff there.. i just looked at him from far… admiring him actually… if i were in a movie… the camera would make a slow motion effect.. first focusing on my face.. Smiling while i looked at him.. and then camera focuses on him and the people surrounding him who are laughing away looking at his little gestures and listening to his funny words.. at this moment.. my heart said “you’re really something kiddo”… i never get a lot of that kinda moment.. that’s why i can remember exactly how i felt at that time..

Anyway.. a while after that, doctor panggil suruh masuk OT… so i went to him and carried him.. he was smiling and kept on saying “bye..bye…bye..” to everyone.. and all of them were laughing and bid him goodbye.. he thought he was going jalan2.. but right when we reached the OT.. ive never seen a child’s face change like that… honestly.. ive never seen a child have that kind of expression.. he was smiling and laughing and happy and suddenly his face literally drops and i saw fear in him… i totally broke down inside… i know it sounds dramatic but i don’t lie.. this was how it was.. he looked at me like he couldn’t believe what he is seeing… he saw the operation bed.. and oh how my heart breaks.. i had to put him down so that they could gas him..and put him out… i told myself earlier that i wasn’t going to cry.. coz its just a simple surgery…! but when i saw his face and his last look before he was put under… my heart cried so hard and my tears trickled down profusely… my lil baby… my only baby…. how could i not..right?

well.. almost an hour passed and they called us… it was done.. he is now free… syukur Alhamdulillah… guess what.. being the strong boy that he is… eventhough he was still high from the anesthetic, he wanted to walk.. doesn’t want to go to sleep… haihhh.. anyway ..so that’s that.. i hope this would be a closing chapter of his cancer story.. :)

Update on Aisy

Salaam everyone.. its been awhile since my last post.. which is good coz maksudnya Aisy takde ape2 masalah in his health insyaallah.. but just for updates, Aisy’s latest check up was on 10th July masa bulan puasa harituh.. and syukur Alhamdulillah, his kidney dah tak bengkak and no progress on the tumour.. and since all is going well, the oncologist, first time jumpa doctor ni, slalu jumpa Dr. Z jer.. but this time jumpa this other doctor.. she said lepas ni tak payah buat ultrasound scan every month dah.. mulai skarang, cuma buat sekali dalam dua bulan jer.. happynyer dengar..

Tapi… haaa ade tapi… haihh.. tapi aisy kena buat chemo port flushing.. haaa?? tapi Aisy dah tak flush dah tiga bulan! sebab harituh Dr. Z cakap takyah flush dah sebab dah nak buang.. but this doctor insist kena flush jugak.. she said it is IMPORTANT to always do flushing.. haiyoo.. mula la i nak panic kan.. mestilah dah sumbat kan sebab dah 3 bulan tak flush?? what will happen to Aisy kalau dia tak buat flushing and benda tuh sumbat?? macam biaselah, me being tak puas hati.. pergi bilik sebelah and tanya Dr.Z, “camne nie? kata dah tak payah flush and now this doctor suruh flush? Aisy dah tiga bulan tak buat flushing..i thought u said tak payah dah?” huhuh Dr.Z diam jap and masuk bilik dia..

After few minutes, she came in and said, “Takpe, tak payah flush, i already called the doctor kat ward cancer tuh and we will get you the closest date untuk remove chemo port dia, we will call u and tell u the date.. it should be somewhere near Raya.. so maybe takleh balik kampong la..”

Hmmmm….okay.. that’s good if we can get the closest date la kan but we might have to cancel the Penang trip… huhu… takpelah as long as its out.. im happy.. and so dah selesai semua.. we went home..

……………………………………..

And now, we still haven’t got the date for his chemo port removal… kerisauan melampau.. and every week mesti call doctor kat ward to ask the status.. being the persistent mom that i am hehe.. but Dr.N has been really nice to entertain my calls and try to accommodate as much as he can.. we haven’t been given a date because memang waiting list sangat panjang and selalu ade emergency cases.. so memang susah nak dapat the Operation Theatre (OT) for this.. i understand but im just so worried sebab Dr kata, if tak buat flushing lama, can cause thrombosis.. which is blood clot yang boleh menyebabkan peredaran darah terganggu and menyebabkan tisu yang tak dapat supply darah and oksigen tuh mati.. haihhh.. naudzubillah.. i really hope this does not happen.. aisy dah sihat.. i taknak lah benda ni jadi ancaman to his health kan.. hopefully dapatlah date for next week.. hari2 pikir.. Plus we are still waiting for a date untuk buat MRI before year end..semoga dipermudahkan segalanya..

Pray for Aisy..

Aisy's monthly scan

Salaam n greetings readers, its been awhile but theres not much to update since Aisy is now only going for his regular check up every month with his oncoligist.. And another with the neurosurgeon.. 

Well last Thursday, we went to the paediatric institution, did his ultrasound scan and clinic check up..

Menangis la dia kat atas katil masa scan tuh, nangis mcm kena pukul.. Sampai sedu sedan.. Then trus crawl up kat ketiak ayah dia and fell asleep tertungging heheheh poor baby.. Tired of crying..

Alhamdulillah doctor said the tumour has no progression.. Means it didnt grow and nothing weird kat abdomen dia.. But unfortunately his kidney is still mildly swollen.. Still dunno what the cause is n still have to observe his urine n all that.. 

Otherwise he is doing very well n is indeed very active alhamdulillah.. We will be meeting the neurosurgeon on the 17th just to keep him updated of his condition.. 

Ohh and after his check up, Aisy visited his cancer mate at the main building kat ward mata coz kwn dia retinoblastoma, tak sempat nak bergambar coz they had to leave for surgery masa kitaorg sampai.. Diaorg sempat bagi buah tangan jer dari Kedah.. Time kasehhh!! 

So lets keep praying for Aisy to be cancer free for life and also for those children who are still fighting.. May God give us strength.. :)

Oh yea, n the cat kat depan main building tuh takut dgn Aisy coz Aisy asyik nak kiss dia jer hahaha.. Aisy loves meeooowww..

NO ACTIVE CANCER CELLS DETECTED

First and foremost, my ultimate gratitude for Allah s.w.t for the mercy he has showed us... Alhamdulillah..

Yesterday, as some of you might know, we went to the institute pediatrik for Aisy’s regular check up with his oncologist and also to get his MIBG scan results..

First lemme explain that the MIBG scan is a scan that uses radioactive that will pick up on active cancer cells.. the radioactive substance will give a reaction if there are any cancer cells in the body... yesterday.. the Oncologist told us that the scan did not pick up anything.. it didn’t detect anything... my jaw dropped... mata dah berair.. jantung stop kejap... rasa terharu dengan pemberian Allah ni.. tapi kejap2.. betul ke? like seriously???

Doctor said, “Well but we still have to make sure he goes for check up as usual because for MIBG scan, it’s only 90% accurate.. so there is still that 10% doubt and the tumour is still there, cuma it might be benign (not active).. but whatever it is, it’s good news”... ALHAMDULILLAH...

Honestly at that time, perasaan macam2 sgt.. rasa happy.. rasa risau pun ade.. takut harapan palsu.. betul ke results aisy ni? bukan tersalah results ke? rasa nak jerit kuat2 pun ade.. Ya Allah, jika betul keputusan ini.. aku bersyukur padaMu atas pemberian rezeki kesihatan anakku.. dan janganlah Engkau kembalikan penyakitnya itu...

I tengah tulis ni pun, pale otak masih blum boleh register yang Aisy is actually getting better.. rasa macam mimpi jerr.. All praises to Allah..

But my heart is still sad to see and hear about Aisy’s fellow fighters yang masih di ward cancer tuh.. So i have to share everything that we did for Aisy to battle his cancer.. the food.. the supplement..the pantang.. and religious practice insyaallah.. here goes.. let’s start with food..

Food that we AVOID giving to Aisy:

1) Bread/Roti (it has yeast which is some sort of fungus)

2) Cultured drinks/Minuman kultur (e.g. Vitagen, Yakult etc)

3) Yogurt

4) Nuts/Kacang

5) Mushrooms/Cendawan

6) Chicken/Ayam (except for ayam kampong – the ones yang tak inject)

7) Daging

 

So far itu je yang i rasa kitaorg tak bagi Aisy makan.. Aisy selalunya makan ikan la... and sayur2 and buah2...if i ingat ape lagi yang kitaorg pantang, nanti i update this post..

So next, supplement anti-cancer yang kitaorg bagi pada Aisy.. dia consume hari2.. so far baru sebulan setengah dia makan supplement2 ni semua..sebab kitaorg stop treatment dia.. so kena lah berubat cara lain kan.. tapi kitaorg mmg dah STOP CHEMO tau, so untuk mereka yang anak masih chemo, saya tak tau ape reaction kalau dia amik supplement2 ni.. so jaga2 yer..  we gave him all theANTI-CANCER SUPPLEMENTS yang kitaorg rasa okay.. this is the list..

1) 4Life Transfer Factor Plus (capsule tapi kitaorg bukak capsule and letak dlm susu dia)

2) Riovida Multi-Berry Juice (campuran macam2 berries, letak dlm susu dia jugak)

3) Sabah Snake Grass Plus (beli online dari company U-turn, dia mcm pati, so letak dlm susu)

4) Habatussauda Oil (makanan sunnah yg dijanjikan merawat semua penyakit kecuali mati.. dlm bentuk    oil, senang letak dlm susu)

5) Apricot Kernel Oil (minyak biji apricot, letak dlm susu gak)

6) Dried Apricot (Buah Apricot kering)

7) Kurma Ajwa (makanan sunnah jugak yg dikenali utk merawat penyakit)

8) Air zam-zam (yang dijampi SENDIRI – lebih afdhal jika ibu bapa sendiri yang membaca ayat2 suci Al-Quran dan doa pada air minum dan makanan anak, insyaallah)

Okayy.. so itulah semua supplement yang anti-cancer.. kitaorg try nak bagi soursop tapi banyak sgt fiber tuh, susah Aisy nak makan, asyik sangkut kat tekak jer..maybe bila dah besar skit kot.. okay so here comes the crucial part.. part ni memang sangat penting.. untuk seorang Muslim.. kita harus berserah kepada Allah 100%.. apa saje yang kita dapat.. apa saje yang kita tak dapat.. atau apa saje yang kita dapat dan diambil kembali.. semua kena berserah pada Dia... theres no other way.. setiap keputusan yang kita buat, kita minta Allah berikan yang terbaik.. bagi kita nampak akan kebenaran dalam setiap langkah, setiap keputusan dan setiap urusan kita.. lepastuh, bila dah buat keputusan, yakin 120% dengan Allah.. baik atau tidak kesudahannya untuk kita... kita kena terima yang keputusan itulah yang terbaik sebab kita dah mintak petunjuk Allah.. jangan sesekali sangsi akan petunjuk Allah.. tidak ada seusatu yang terjadi dalam dunia ini tanpa izinNya.. bear that in mind..

Sebelum ni, sejak December tak silap saya, kita bawak Aisy untuk rawatan Islam (ilmu tapak tangan syahadah- 99 nama Allah).. kita bawak dia di Kajang.. hubby dapat tau sebab kat tempat kerja ni, salah sorang anak murid Tuan Haji tuh keje kat situ.. so hubby berkenalan dgn sahabat ni and dpt tahu pasal rawatan Islam tuh..mula2 i sangat skeptikal dengan rawatan2 yang macam ni.. sebab tak caya kat orang, takut orangnya tak jujur atau guna benda2 halus kan.. cuak jugak mula2 tuh.. tapi hubby nampak confident jerrr.. so i pun agree lah.. jadi kita bawak Aisy untuk setiap minggu lah.. then lepas tiga kali tak silap saya.. rawatan dia pun dah habis.. then masuk tahun ni.. kitaorg dah tak payah pegi kajang dah sebab rakan sekerja hubby ni kira dah graduate lah dengan Tuan Haji insyaallah.. so bawak ke damansara jer..tak pun dia datang rumah.. Alhamdulillah selain daripada buat rawatan pada Aisy, banyak ilmu agama yang dapat saya n hubby pelajari.. saya rasa bersyukur ditemukan dengan Tuan Haji dan sahabat sorang ni sebab melalui mereka, Allah telah memanggil saya n hubby untuk membuka mata hati dan melihat Islam secara lebih jelas Alhamdulillah.. Jadi, sampai sekarang, kita buat jugak sekali sekala dengan sahabat ni untuk rawatan Aisy.. kita usahakan, insyaallah, kita akan dapat yang terbaik dari Allah s.w.t.

Okay... so yang mana supplement atau air minum or air zamzamyang boleh, saya akan baca surah2 Al-Quran yang dinasihatkan oleh orang ramai.. seperti di bawah ini... selain itu, bacaan surah yassin dan doa pada setiap supplement, air zam-zam, minuman, makanan yang mana yang mampu saya buat.. sorry tapi saya kurang yakin dengan produk2 air jampi yang dijual di pasaran, bukan sebab tak percaya pada orang yang membaca tuh, cuma kadang2 ada pihak yang mengambil kesempatan kaut keuntungan dan menjual air biase je tapi dia cakap konon2 dah dibaca 30 juzuk dan sebagainya..

Jadi, saya buat sendiri.. lagipun kan dah dikatakan doa ibu bapa pada anaknya insyaallah akan termakbul.. jadi, baiklah kita buat sendiri mane yang mampu insyaallah..

Selain itu, solat-solat sunat jugak amat digalakkan.. solat taubat, solat tahajjud, solat hajat haruslah diamalkan sebanyak yang mampu... saya pun tak dapat nak buat hari2.. insyaallah buat bila boleh.. dan usahakan sedikit untuk bolehkan buat insyaallah.. dan bila nak kena buat keputusan bila doctor nak suruh tambah chemo ke buat operation ke.. solat istiqarah lahh banyak2.. kalau tak sempat solat..doa istiqarah.. banyak2 mintak petunjuk.. dan yakin dengan keputusan yang dibuat selepas itu..

Sapukan air zam-zam pada badan anak.. selawat dan zikir banyak2 pada Allah.. tinggalkan segala yang dilarang sebab kadang2.. apa yang Allah bagi ini adalah sebab dosa2 kita.. anak2 kita masih suci.. ahli syurga.. belum ada dosa.. jadi kita kenalah bersihkan diri dari semua yang terlarang..

Ini adalah sebahagian daripada ayat 44, Surah Al-Fussilat:

...“Katakanlah, Al-Quran itu, menjadi (cahaya) petunjuk serta penawar bagi orang-orang yang beriman”...

Satu lagi amalan yg sgt2 penting yg harus dibuat.. Sadaqah.. Banyakkan sedekah kpd mereka yg memerlukan.. Ahli keluarga yg kesempitan wang.. Rakan2 yg x cukup duit.. Blanja diaorg makan.. Beli la pisang ke kuih muih utk bg kwn2 office makan ke.. Bagi pada security guard mane2 ke.. Macam2 cara n macam2 org kita boleh tolong.. Senyum pun dah jadi sedekah.. Rasa duit tak cukup utk buat sedekah? Jgn risau, kerana yakinkan Allah, insyaallah rezeki yang masuk akan sama dgn rezeki yg keluar.. Malah mungkin akan berlioat kali ganda lagi.. Kita sedekah ikut kemampuan lah.. Kalau ade rm100, bagi lah rm30 utk sedekah.. Kan ade lagi rm70, haa itu buat susu anak ke.. Kalau ade rm20? Bagi lah rm5 ke.. Kalau tidak memudaratkan.. Ringankan tangan memberi bantuan.. Sedekah ilmu, sedekah masa pun boleh.. Dlm hati, kerana Allah taala.. Bila nak buat sedekah tuh, bagi pihak anak kita yg cancer ni pun elok.. Yg penting, kena ingat, duit dlm purse atau wallet tuh, bukan kita punya pun.. Kita pinjam sekejap jer.. Ia akan pergi pada yang berhak.. Jadi, banyakkanlah sedekah.. Insyaallah.. Itu antara rawatan penyakit yg berkesan.. 

Insyaallah dengan berkat usaha, doa dan tawakal kepada Allah, He will only give the best to us.. Yakin 100%.. Percaya 100%.. Redha 100%.. memang senang lah untuk saya cakap kan? sebab anak saya dah semakin pulih insyaallah.. tapi saya pun tak tahu kesudahannya.. siapa yang tau kesudahan seseorang itu? cuma kita kena doa supaya kita redha dengan setiap pemberianNya dan setiap apa yang diambil semula..

Insyaallah i will still continue to fight for childhood cancer awareness.. we will still try our best to get more for our little fighters..

I will update on Aisy’s progress from time to time insyaallah.. Thank you all for your support and donation that gave Aisy a chance to consume all these supplements and get better.. May God bless you and your family good health and wealth and happiness together..

Side effects of chemotherapy/radiotherapy on our children which doctors might not have explained

Hi all, this post is just to share with all of you about some of the many side effects of chemotherapy (chemo) and radiotherapy (RT) on our children. Banyak side effects kat sini yang doctor tak pernah explain to me or my hubby masa kitaorg buat chemo for Aisy... ni semua atas dasar usaha research sendiri dan bantuan daripada org2 yg tak dikenali yang share fakta2 ni.. sorry tapi mostly memang in English.. susah nak cari in bahasa..

Selalunya doctor or hospital selalu ceritakan side effects yang immediate, yang kita akan nampak semasa anak2 kita tengah buat chemo or RT.. macam rambut gugur, kulit jadi gelap, muntah2, ulcer, loya, darah merah turun, immune system turun dan mcm2 lagi.. itu yang selalunya akan jadi masa chemo or RT course dijalankan.. tapi ramai yang taktau atau tak diberitahu pasal long term effect pada anak kita.. saya cuma nak share sebab ilmu Allah ni luas dan saya rasa bertanggungjawab untuk berkongsi apa ilmu dan fakta yang saya dah come across.. ni semua saya copy from various websites.. you can do your own research.. ape yang saya kumpulkan ni is actually my own reference untuk aisy.. i try to highlight mana yang important to know if it is too long for u to read.. so please have a read to know more..demi anak kita..

1) Long-term outcomes

During and after cancer treatment, the main concerns for most families are the short- and long-term effects of the cancer and its treatment, and concerns about the cancer still being present or coming back.

It is certainly normal for families to want to put the cancer and its treatment behind them and to get back to a life that doesn’t revolve around the cancer. But it’s important to realise that close follow-up care is a central part of this process that offers children the best chance for recovery and long-term survival.

For many years after treatment, it is very important that children have regular follow-up exams with the cancer care team. As time goes by, the risk of the cancer coming back goes down, and doctor visits might be needed less often. But they are still important because SOME SIDE EFFECTS OF TREATMENT MIGHT NOT SHOW UP UNTIL YEARS LATER.

Because of major advances in treatment, more children treated for cancer are now surviving into adulthood. DOCTORS HAVE LEARNED THAT THE TREATMENT MAY AFFECT CHILDREN’S HEALTH LATER IN LIFE, so watching for health effects as they get older has become more of a concern in recent years.

Treating childhood cancer requires a much specialised approach, and so does the care and follow-up after treatment. The earlier any problems can be recognised, the more likely it is they can be treated effectively.

Childhood cancer survivors are at risk, to some degree, for several possible late effects of their cancer treatment. It’s important to discuss what these possible effects might be with your child’s medical team. The risks depend on a number of factors, such as the type of cancer, the specific cancer treatments used, doses of cancer treatment, and the child’s age at the time of treatment. Some of the MORE COMMON LATE EFFECTS OF CANCER TREATMENT INCLUDE:

- HEART OR LUNG PROBLEMS (due to certain chemotherapy drugs or radiation therapy)

- SLOWED OR DELAYED GROWTH AND DEVELOPMENT (in the bones or overall)

- CHANGES IN SEXUAL DEVELOPMENT AND ABILITY TO HAVE CHILDREN

- LEARNING PROBLEMS

- INCREASED RISK OF OTHER CANCERS LATER IN LIFE

2) What causes late effects?

Late effects are CAUSED BY THE DAMAGE THAT CANCER TREATMENT DOES TO HEALTHY CELLS IN THE BODY. Most late effects are CAUSED BY CHEMOTHERAPY OR RADIATION. Major surgery can also lead to late effects.

Cancer treatments like radiation therapy or chemotherapy kill cells that grow quickly, such as cancer cells. But in a child, many healthy cells in organs throughout the body are growing fast, too. Treatment can damage these cells and keep them from growing and developing the way they should. Sometimes the damage from treatment isn’t serious enough to cause problems that are noticed right away, but they may show up over time.

Survival by Children’s Oncology Group risk group

Low-risk group: Children in the low-risk group have a 5-year survival rate that is higher than 95%.

Intermediate-risk group: In children in the intermediate-risk group, the 5-year survival rate is around 90% to 95%.

High-risk group: The 5-year survival rate in children in the high-risk group is around 40% to 50%. (We were told Aisy was in this group)

The overall 5 year survival rate for childhood cancer is 80%.  That is awesome.  But SURVIVAL COMES WITH A COST.  OVER 2/3 OF THOSE SURVIVORS HAVE AT LEAST ONE SERIOUS CHRONIC HEALTH CONDITION.  1/4 of those survivors face a late-effect from treatment that is CLASSIFIED AS SEVERE OR LIFE-THREATENING.

 

3) Incidence Childhood Cancer (globally)

)

 

160,000 new cases/year < 15 years of age. 

90,000 deaths/year < 15 years of age

 

(Ferlay J, IARC Cancer Base N°5, 2004)

 

4)

Although chemotherapy can be very effective, the success rate varies and in certain cancers can be as low as one per cent!

"A survey of 128 US cancer doctors found that if they contracted cancer, more than 80 per cent would NOT have chemotherapy"  

A survey of 128 US cancer doctors found that if they contracted cancer, more than 80 per cent would not have chemotherapy as the "risks and side effects far outweighed the likely benefits". 

You have to work out what´s best for you and your type and grade of cancer.

4) A review of chemotherapy on 5-year survival rates in Australia garnered almost identical results, with a 2.3 PERCENT SUCCESS RATE, compared to the U.S. 2.1 PERCENT RATE OF SUCCESS. 2% only?

(NaturalNews) Chemotherapy is one of three main treatment protocols of conventional medicine, one which millions of people worldwide have been put through. In fact, virtually all of us know someone who suffered and finally passed on after a futile course of chemotherapy prescribed by his or her doctor. 'Nothing more could be done anyway', we are often told. Lately, a recent study in Britain has raised serious questions about chemotherapy, in particular the role it plays in hastening and even causing the death of late-stage cancer sufferers.

Details and Findings of Study

The study had been carried out by the National Confidential Enquiry into Patient Outcome and Deaths in Britain, whose members are mostly taken from British medical royal colleges. It had looked at the cases of 600 cancer sufferers in the country who had passed on within 30 days of treatment. The majority of the said patients had already been declared "incurable" by doctors, and had been put on chemotherapy for palliative purposes.

And the study found that ABOUT 1 IN EVERY 4 OF SUCH DEATHS HAD EITHER BEEN SPED UP OR EVEN CAUSEDBY CHEMOTHERAPY. The study's findings also included the discovery that 2 OUT OF EVERY 5 OF THE PATIENTS HAD SUFFERED SIGNIFICANT POISONING FROM THE TREATMENT.

Learn more:http://www.naturalnews.com/025499_cancer_chemotherapy_treatment.html#ixzz2xuR0sR4g

 

I’m sure some of the doctors who comes across this post of mine would flip.. but these facts are done with research on them.. there are some things they try to avoid telling patients because they do not want patients to worry more than they already have.. but we as parents of the patients, need to know the whole truth before we decide something or some kind of treatment for our children.. we deserve to know more.. it is our right to know from A-Z what the treatment can and will do to a person.. life is a precious thing and no one deserves to live more than another..