The Truth 365

Cancer Facts

It is impossible to measure the impact that childhood cancer has on it’s victims and their families by using statistics but research funding decisions are often based on numbers. Here are some facts about childhood cancer for you to consider:

• Cancer is the leading cause of death by disease in children and adolescents in the United States. (Source: National Cancer Institute)

• Each year in the United States, approximately 13,500 children and adolescents 18 and under are diagnosed with cancer, that’s more than a classroom of kids a day. (Sources: Center for Disease Control and Children’s Oncology Group)

• One out of every 300 males and one out of every 333 females in America will develop cancer before their 20th birthday. (Source: American Society of Clinical Oncology)

•More than 40,000 children undergo treatment for cancer each year. (Source: CureSearch)

• Approximately 20 percent of all children with cancer will die for their disease, asecondary cancer,  or complications from treatment. (National Cancer Institute)

• The causes of most pediatric cancers remain a mystery and cannot be prevented. (American Cancer Society)

• Childhood cancer does not discriminate, sparing no ethnic group, socio-economic class or geographic region. (Source: Centers for Disease Control data)

• About one in 500 young adults is a childhood cancer survivor. Nearly 2/3  of the survivors later experience significant and chronic medical problems or develop secondary cancers as adults that result from the  treatment of their original cancer. (Source: UCSF Benioff Children’s Hospital)

•  Incidence of invasive pediatric cancers is up 29% in the past 20 years. (Source: National Cancer Institute)

• In the last 20 years, the U.S. Food and Drug Administration (FDA) has approved only two pediatric cancer drugs—Clolar (clofarabine) and Erwinaze (asparaginase Erwinia chrysanthemi)—that were initially studied in children. Other drugs for children’s cancers were first studied in or approved for adults with cancer. (American Association for Cancer Research)

• The average age of death for a child with cancer is 8, causing a childhood cancer victim to lose 69 years of expected life years; a significant loss of productivity to society. (Source: Kids V. Cancer)

•Childhood cancer survivors are at significant risk for secondary cancers later in life. (Source: National Cancer Institute)

•Cancer treatments can affect a child’s growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed. (Source: National Cancer Institute)

•Radiation to a child’s brain can significantly damage cognitive function, or if radiation is given at a very young age, limiting the ability to read, do basic math, tell time or even talk. (Source: National Cancer Institute)

•Physical and neurocognitive disabilities resulting from treatment may prevent childhood cancer survivors from fully participating in school, social activities and eventually work, which can cause depression and feelings of isolation. (Source: National Cancer Institute)

Dear readers, 

help us by spreading the awareness of childhood cancer.. Only 3.8% of research fund goes to childhood cancer research.. And we r not talking about Malaysia.. I dun think we even have a research group on childhood cancer here in Malaysia.. Are our children not worth fighting for? Do our babies not deserve the same chance to fight for their lives as the adults do? Dont these innocent eyes deserve to see tomorrow? Tell our government that we need to do sumthing about it.. People know about the pink ribbon.. But are u aware of the gold ribbon? I wear a gold ribbon pin on myself and u know what people ask me? "Hey, isnt cancer ribbon pink in colour?" U know how heartbreaking it is to see people dun know the existence of childhood cancer? It makes me feel like my child doesnt matter.. My son matters and so does the other children.. They matter.. So help us .. Spread the awareness.. If u have bought my car stickers, put it up proudly on ur car windows.. Coz even if u think it wont make any change.. It does and it will.. If it doesnt change significantly at least us, as parents, would feel the support knowing that our child's suffering is at least acknowledged if not cured..

Fund Raising & Donations for Aisy

Alhamdulillah... The car stickers that we planned to do for Aisy's fund raising has arrived and has already achieved sale of 400pcs.. And we will continue to sell more insyaallah... After permintaan ramai, i am putting up my bank account for donations.. For those who would like the car stickers, i can give by hand to those who live in subang jaya. And for others, i can post to u by snail mail lah, cuma memakan masa yang lama lah, so please understand lah hehe.. Sebab i takleh nak incur cost utk bayar pos laju huhu.. If order dalam quantity yang banyak contohnya 30pcs ke atas ke, mungkin kita boleh adjust lah insyaallah.. Tapi jangan bank in dulu sebelum confirm purchase tau, sebab takut kehabisan stock ke ape ke kan.. Please do inform me first via email :)

These are pictures of the sticker.. It is RM10 per sticker..

My account details are as below:

Bank Islam Acc 12065020193901 

Fazlina Ismawaty

Sorry i only have one bank account.. And please email me at fazlinaghouse@gmail.com if u have made any donations or would like to purchase the car sticker.. Or just to give ur moral support.. I'd truly appreciate it..

Anyway,

I guess this blog is no longer anonymous.. :) 

A million thanks goes to my wonderful n supportive hubby, family, especially my mom n sister who started the ball rolling, relatives, neighbours, frens, colleagues, anonymous donours, readers, frens of frens, frens' families, family's frens, relatives' frens, colleagues's frens, neighbours' frens and those who have supported this cause and still are.. 

Thank u for giving my son a fighting chance.. God bless.. :))

Decision Decision..

The day has come where we have to give our decision to the neurosurgeon. Unfortunately, I tak dapat pergi because of my sudden back pain yg membuatkan i takleh jalan, duduk sakit, berdiri pun sakit.. Haihh.. So hubby had to go by himself to see the neurosurgeon...

So the whole day, i waited for him to come home and tell me what the doctor said regarding our decision.. biaselah lelaki, they never tell a story in detail kan.. unlike most women where kita akan cite kat dia dari time kita sampai hospital, sampailah balik hehehehe.. betul tak? so this is how hubby sums it up lah..

Reach the hospital and got to see the doctor around 1.30pm..

Hubby: So doctor, after much deliberation and sembahyang istiqarah.. our decision is not to proceed with the surgery..

Surgeon: Oh i see.. but u are aware of the risks right?

Hubby: Yes, i’m aware..

Surgeon: Alright then, I respect your decision.. but Aisy has got to come here for regular check ups yeah.. perhaps every six weeks..just to see his progress..

Hubby: Sure, no problem. Thank you Doc.

Left the room at 1.45pm...

Logic tak conversation ni takes 15 minutes? hehehehe tak logic kan? im sure theres more to this.. tuh la tak suka bila miss important appointments mcm ni.. hahahaha

Anyway, on a serious note.. our decision is not to proceed with the surgery.. we are seeking and trying alternative treatment (no, not bomoh).. after praying and doa for guidance from God.. He has led us to this decision.. and Insyaallah we stand firm by it whatever the outcome is.. good or bad.. it is all His plans for us.. the only thing is.. whether we are ready to accept it or not..? I sure hope we are..

Well readers, please pray for my son’s well-being.. so that he can have a healthy and normal childhood..

Thank you..

 

Regular Oncology Appointment

Yesterday (13 February 2014) was Aisy’s appointment with the Oncologist.. As usual.. We did everything we usually do as i wrote in my previous post..

Sampai sana around 9am plus.. then do all the necessary things.. Alhamdulillah.. ultrasound results clear.. blood counts pun okay.. flushing pun okay.. yeay..

the doctor asked me if I have decided whether or not we wanna proceed with surgery.. I told her that i’m still waiting for Allah to answer my prayers to give my hubby and I guidance (although it seems that He has, but being human, nak kena confirm btul2) hehe but.. sape lagi yg boleh tolong? no one except for Him...

So I asked her a few questions about their plan for Aisy.. her explanation wasn’t really clear but I don’t blame her coz we as parents pun didn’t give her our consent to proceed with anything.. so the only thing thats coming up is the MIBG which could be in late March or April.. she also gave me the list of drugs that is in plan for Aisy’s chemo (if we want lah).. three different and stronger drugs than before...

Cyclophosphemide

Vincristine

Doxorubicin/adrimiacin

hmmm.. need to find out more on these drugs first before we even consider giving it to Aisy..

So that was all we talked about..she didn’t elaborate much on the MRI results coz I think she didn’t see the scan films..only the report.. so nevermind...

I was doing all the talking with the doctor.. Kesian hubby takleh join in coz Aisy is running here and there ..so kena main kejar2 around the clinic hehehe.. Before I left.. the doctor pat me on the back and said, “God only tests those that are strong and dear to Him”.. “Insyaallah it will all be alright”...

Hati seorang ibu... pilu.. sayu.. hopeful..punah ranah.. risau.. redha.. sedih.. bersyukur..

All I ask is for Him to bless me with sifat redha for all that He has planned for us..

MRI results :(

4th Feb 2014, hari penentuan huhu.. Dup dab dup dab jantung ni nak gi tengok MRI results Aisy.. We reached the hospital about 9am. Appointment is at 10.30am... Hubby bengang sebab kuar awal sangat hehehe yelaaa.. Susah kan nak dpt parking kat HKL tuh. So takpelah kalau sampai awal.. Takdelag tergesa2.. Xpelah men n women dont think alike hehehe .. Anyway, so bila dah sampai, dah dpt parking, we sat and played with Aisy in the car sampai kul 9.30am camtuh. Then kitaorg gerak to the Neurosurgery Clinic.. 

As usual..sampai kul 9.30am, appointment kul 10.30am, dapat jumpa doctor at 1.00pm.. Huhu Aisy pun dah puas main at the whole 5th floor sampai letih n ngantuk dah hehehe

Okay.. The neurosurgeon called us in.. Hati ni sangat mengharap positive results bcoz lepas dah buat rawatan Islam tuh, keyakinan utk Aisy sembuh bertambah.. 

However, Allah lebih mengetahui.. Lepas doctor dah check physical progress Aisy yang sihat tuh, he showed us the films pf the results.. Hmmm... 

"So okay.. U can see the tumour is from L2 to L5.. It has penetrated the spine an is pushing the saraf tunjang".. "Kita tak tau bila dia boleh paralyse or anything like that, so my suggestion is to do operation lah to take out the one yang compressing the saraf tunjang".. 

........ I asked, "what about the tumour thats surrounding the spine?"

"Oh itu i tak boleh pegang sebab byk saraf motor.. And plus utk yg lain tuh he needs multiple surgeries lah"... 

Hati ni rasa macam mane ek? Taktau nak describe how i felt when the doctor told all that dengan nada yang sgt tak prihatin.. Ok, feelings aside, "so what are his chances? And what are the chances that the tumour will masuk balik dlm apine canal?"..

"Well, i tak boleh bagi percentage tapi semua tak certain lah.. I cannot jamin if the surgery can be successful or not, i cant say if he will survive after the surgery, i cant say if he wont have a brain infection or infection to d spine.. Tumour tu pun i kena bukak and tengok dulu, baru tau boleh buang fully, we will try to scrape, sedut, bakar, semua lah yang boleh dibuat.." 

Doctor showed a video and images of how its gonna be done but all of those cases as he call it, are simple cases. Aisy punya is complicated. 

Hmm.. Mata dah berair dah.. Dada dah mula sakit.. 

 "We cant decide now", hubby said.

I added, "u know as parents, seeing him reach his milestones without any problems and hes running and active like a normal kid, then suddenly nak bagi dia lie on the bed dunno whether he'll recover or not"..

"Well, he is okay for now lah.. later u taktau.. Okay, i give u two weeks to decide, coz i need to know asap whether u want to proceed or not, tapi ingat, if u tak nak, then anything happens to ur son, paralyse ke ape, then baru u all nak datang suruh buat surgery, i cannot do it immediately lah hah? U all wait in line lah. Tunggu lama lah yer. Coz 15 million people come here to get treated eventho banyak lagi hospital cantik2 kat luar sana.. Why? Coz we have the expertise here..so u all decide lah.. Come back to me on the 18th feb..

Sakit hati pun ade bila dengar dia seolah2 mcm threaten us like that.. Haihhh.. Sabar lah yer doctor.. Kami kena mintak petunjuk dari Allah dulu.. Let Him guide our decision.. Bukan boleh senang2 nak decide.. If its us, out body, boleh la.. Ini nyawa anak kami.. His well-being.. Its not easy.. 

And so.. We went home with our hearts full of pain.. Minds full of worry.. Thoughts only for Allah.. Seeking His guidance.. And His mercy.. 

After going home and discussing with our parents and families.. We have decided to give him alternative supplements.. Herbal based supplements, with hopes it will help reduce, maintain or even cure his cancer.. Despite how skeptical people are about these kind of treatment, and how doctors are against it.. Korang takkan tau sampai benda ni jadi kat anak korang sendiri.. U will do anything and try everything to avoid him from going thru any pain and misery.. Eventho its more expensive than our treatment in HKL. Its worth trying.. 

For now, we still havent decide on whether or not to proceed with the surgery.. Tunggu jelah 18 february 2014.. Tengoklah Allah gerakkan hati ni nak kata ape.. 

Skang tengah nak buat merchandise untuk raise cancer awareness and also nak raise funds utk Aisy punya medical supplements since its quite xpensive.. Cuba lah cari cara ape2 pun nak collect funds huhu.. For now, tgh nak buat car sticker.. Huhuhu 

Doakan lah supaya kitaorg diberi petunjuk dan jalan yg benar dalam setiap urusan dan decision yg kitaorg buat.. 

Hati sayu jer.. Haihhh.. 

New year's first appointment

Hi.. Its been awhile since ive updated Aisy's story.. N hope its not too late to wish u readers happy new year! Huhu well, on 2nd January 2014 is Aisy regular checkup with the oncologist at the oncology clinic.. 

So, as usual we would do the same procedure every six weeks.. Doctor check his physical progress.. Do an ultrasound to see his abdomen if there is any irregularities.. Then kena flush chemoport and amik darah to see his blood counts.. 

Alhamdulillah doctor said his ultrasound result is fine.. Everything looks normal.. So lepas dah chit chat chit chat, not much to talk about coz we r still waiting for the MRI results, so not much to consult on pun coz Aisy pun sihat n cergas like a normal kid..

After consultation, pegi amik darah and flush chemoport, alhamdulillah blood counts pun cantik.. No problem.. So dah happy, kitaorg pun balik lerr.. Tunggu jelah entry for MRI results..