About This Blog

Nurul Islah @ Kak Cik

This blog is an attempt to record and share the life of Nurul Islah or Kak Cik from 14th June 2007, the day when she was diagnosed as having brain tumor.

With the blog we aim to;

1. update;

a. our family members & friends – of her current situation,

b. her doctors and health practitioners – of her condition and responses to the treatments/ medications,

2. share her experience as well as ours, the parent,

3. solicit more information about brain tumor and the ways to fight it,

4. acknowledge the various people/ institution that has lend their support to Kak Cik & us

As first time blogger we believe there are a lot of shortcomings on this blog. Thus, please bear with us and please feel free to leave your comment.

Sincerely with love,

Mohd Shah & Nor Hashimah

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12 Komen (+add yours?)

  1. Akhma
    Jul 10, 2007 @ 09:37:08

    Terlalu besar rasanya ujian yang menimpa keluarga ini. Tapi ingatlah janji Allah “Allah tidak akan membebani seseorang melainkan sesuai dengan kemampuannya. Dia mendapat pahala dari kebajikan yang dikerjakannya dan dia mendapat seksa dari kejahatan yang dibuatnya…” (Al-Baqarah:286)Kami sekeluarga akan mendoakan yang terbaik untuk Kak Cik dan ketabahan hati untuk seisi keluarga. This is a very special blog written from the bottom of a parent’s heart and i’m deeply touched by it.

    Balas

  2. Mohd Shah
    Jul 11, 2007 @ 17:43:14

    Terima kasih Akhma, memang berat ujian ini namun Insyaallah kami akan lalui dengan penuh tabah, one day at a time.

    Balas

  3. musyrif
    Jul 23, 2007 @ 17:20:03

    Assalamualaikum w.b.t…
    Saya memperkenalkan diri terlebih dahulu..saya musyrif..bekas pelajar As-Saidiyyah..MTAAS,Batch 2001-2005…kini melanjutkan pelajaran di Morocco…
    Saya agak tersentuh dengan dugaan yang menimpa keluarga Pak Cik…saya doakan supaya Kak Cik sentiasa tabah dan akan segera sembuh…dan kepada seluruh ahli keluarga..saya doakan supaya anda semua diberi kekuatan dan tabah menghadapi ujian Ilahi…..
    Semoga Allah merahmati dan mengangkat darjat keluarga Pak Cik disisinya…atas segala ujian yang dikurniakan olehnya…..
    Sekian…May Allah bless you’ll…………….

    Balas

  4. Mohd Shah
    Jul 24, 2007 @ 09:02:41

    W’salam Musyrif,
    terima kasih atas kesudian melawat blog ini dan atas doa/ ucap selamat tersebut. Sememangnya ini merupakan ujian yang amat berat namun bila difikirkan semula, ujian kesihatan/ kekayaan/ pangkat dan keselesaan rasanya lebih berat lagi sebab kita akan mudah terlalai.
    Kami mendoakan agar Musyrif dan kawan kawan lain dapat belajar bersungguh sungguh di sana dan kembali untuk bersama membina Islam di Malaysia.

    Balas

  5. Sumilah Marto
    Ogo 02, 2007 @ 18:40:45

    Askm wb.

    ‘Betapa berat mata memandang, berat lagi bahu yang memikul’….

    Tiada kata-kata yang mampu saya ucapkan setelah membaca catatan demi catatan dalam blog saudara…

    Hanya doa yang mampu saya sekeluarga ucapkan:
    Semuga saudara sekeluarga termasuk Kak Cik terus dikurniakan ketabahan yang tinggi dalam mengharungi ujian yang mendatang…Semuga Allah memberikan yang terbaik di sisiNya dan menyembuhkan segera derita yang dialami oleh Kak Cik…

    Benar seperti kata saudara, ujian kesenangan dan masa lapang seringkali melalaikan kita…

    Semuga ujian yang sedang saudara sekeluarga hadapi akan terus mendekatkan saudara sekeluarga di sisiNya dan dalam redhaNya selalu…Ameen!!

    Salam sayang dan titipan doa dari kejauhan untuk Kak Cik!!

    Sumilah Marto
    KW JIM Johor

    Balas

  6. Earlaiman Abdullah gale
    Dis 30, 2007 @ 17:06:40

    Originally written as a journal for informing friends on the internet, I forward this as another narrative of the “brain tumor” experience. The original has photos embedded, but I know not how to manage that here.

    The Story Of Awal Ambia
    By Earlaiman
    July 7, 2007
    Words: 2985

    Bismillah ir rachman ir rahim….

    First of all;

    As many of you already know, we have a small one in the family who has had a problem. About mid-May Awal Ambia, Rosmala’s niece Zeenat’s youngest son, seventeen months, began vomiting after his morning breast feeding. In a matter of two days, he began to lose coordination, equilibrium, his left eye developed a funny “cast” and, most tragically of all, he was losing his normal happy and cheerful, personality.

    This new behaviour was a far cry from the beautiful little boy who had become our Little Prince, the perfect, serious, curious little fellow who had never once in his life cried or complained, but only laughed and gazed at you in knowledgeable wonder from eyes as deep as the sea.

    Taken to see a Pediatrician at the Subang Jaya Medical Center (SJMC), Dr. Sofiah Ali, she immediately ordered MRI scans of the brain which disclosed a tumor, about 47 by 41 mm exactly in the center of his brain, behind his nose and between his ears

    It sat atop the brain stem and nearly filled the third ventricle, obstructing the drain canal, backing up fluid drainage, and resulting in severe pressure (hydrocephalus) in the surrounding brain tissue.

    A Neurosurgeon, Dr. Halili, was immediately consulted and the following morning, on the 16th of May, he took Awal into surgery where he installed a shunt (a subcutaneous tube leading from the ventricle down to his abdominal cavity) to drain off excess brain fluid and relieve the pressure.

    It worked and he began to recover his speech, eye motion, equilibrium and other faculties which had deteriorated somewhat. A biopsy was taken at the time which pathology determined was benign; a bit of good news after some tense and worrisome days. After a brief stay in hospital, he was sent home where his recovery continued.

    For the next five or six weeks he was recovering well and it looked as if he was going to be able to live a normal life with his “thing.” Apparently, in cases like this, where the tumor is benign and the shunt works, it is customary to defer the risk of more invasive brain surgery unless the tumor grows or begins to infringe on the patient’s lifestyle or becomes life-threatening. It seems that there are a number of young children with tumors like these which lie dormant and the children learn to live with them and mature normally.

    Such was not to be the case for him, unfortunately.

    Eventually, he had begun to manifest some of his old symptoms again, gradually losing equilibrium and walking unsteadily; he could not, or would not, sit up straight, and toppled over from time to time.. He vomited once or twice after morning feedings. When he tired his left eye wandered, and he was forgetting some of the “moves” his grand-uncle has taught him…, pulling down a strong and affirmative “Yes!” his “High Five” and “Bang Ten,” salaam, blowing kisses and vigorously waving ‘bye-bye.’ and how to mimic Aunty on the cellphone, with hand to ear and “Hello-o-o?” and, most tragically, losing his joyous, happy and excited personality.

    A new series of MRI and MRA imagery on the 27th of June, showed that the tumor had not stabilized as hoped and had, instead, nearly doubled in size in only six short weeks. It was now six centimeters in length, and nearly as wide. Benign, yes, but big!

    It occupied nearly the entire area of the third ventricle and was, itself, pressing on the brain stem and exerting pressure in the surrounding brain tissue.

    His Pediatrician, Dr. Sofiah and her consulting Neurosurgeon, Dr. Halili, described the situation as urgent.

    We consulted Dr. Jafri Malin Abdullah, the foremost Neurosurgeon in Malaysia, Head of Neurology at the National Institute of Medicine, and husband of Fatim, one of Mala’s classmates, who upon reviewing the MRIs and lab reports recommended immediate surgery; to the extent that we do not even consider delay even long enough to bring the child to his hospital, only a few hours flight time from here.

    The tumor must be urgently removed or reduced in size, or the consequences could rapidly prove fatal.

    In no time at all we found an impressive Neurosurgeon who would take on the job. Dr. Benedict Marius Selladurai, at SJMC who, after consulting with Drs. Sofiah and Halili, studying the MRIs thoroughly, and ordering a few more scans to his own specifications, described the methods, risks and possible outcomes involved in the surgery, and accepted Awal as his patient.

    Awal was admitted into SJMC ICU on Friday the 29th of May, 2007, placed under close observation, treated with drugs and steroids to inhibit further development of the tumor and carefully prepped for surgery over the weekend.

    On Monday morning, the 2nd of June, Dr. Benedict, with his surgical assistant, Dr. Kumar and his team took Awal into surgery with the hope of “…getting as much of it we can, without risking damage to the surrounding tissue or the patient…” Awal, by that time, was nearly comatose, eyes badly unfocused, almost bereft of coordination in his limbs, and beginning to exhibit petit-mal seizures.

    Four hours later they brought him out, and into ICU for recovery. He looked quite small and helpless; bleary eyed from anesthesia and weary from the trauma, face hidden in an O2 mask, tubes and wires stuck into, out of and onto almost all parts of his small body.

    But, the news was good!

    Dr. Benedict and his team had found, not a tumor at all, but a cyst. A 6 by 5 cm Dermoid type tumor; the kind usually found, as one surgeon described, in women’s wombs, but rarely, if ever, in the brains of small boys. Whatever it was, he was able to remove 90 percent of it by surgical procedure and burn the remainder, as much as possible, by laser. There is a high probability that it has been destroyed and will not return. About that, we shall have to wait and see.

    He went into ICU, wearing his O2 mask, lying limp and inert amidst a nest of tubes and wires.

    But, when he opened his eyes a short time later, they were clear, even, bright, and he spoke, or mumbled into his mask, a few of his special “learning words,” “ah,” “da,” “ma,” “uh!” and began pulling at the tubes and the wires attached to parts of his body.

    Nurses had to tape gauze wrapped “paddles” to his palms so that he could not grip them and tug them off.

    He remained in ICU for another week. Many of his faculties began to recover, and he began to respond slowly. His brain had suffered some pretty intense trauma, but his surgeons and his neurologist said that they saw no apparent physical or permanent damage, and he should recover fully.

    Following ICU, he spent another week in a private ward while his surgical wound, a three-inch flap and plug cut out of the top of his skull, healed.

    He has been home for two weeks now, sutures out and dressing off. He, his mother, father and six-year-old brother live across the courtyard from us. He is recovering slowly. In the morning, after his dad has gone to work and his big brother off to school, his mother brings him over to spend the day with Aunty and Uncle.

    He shares my breakfast, eating most of it, grabbing at my wrist when I am not fast enough to offer him the fork, and then we both lie down for our nap. Two tired specimens, at opposite ends of the mortal cycle, both nearly toothless and scant of hair, but he is still the only one in diapers! He sleeps a lot, but then, he has a lot of trauma to recover from and a lot farther to go than I.

    He lost a lot of muscle tone and had grown weak as a consequence of nearly a month essentially bedridden. But he has good equilibrium, sits straight, can stand, is slowly recovering muscular strength and coordination, and can walk, if not exactly very steady or confidently yet.

    He seems to have all of his memory and coordination back; although he is a bit “slow” in responding, as if he has to think about things and remember how to do them before he tries; he tires quite easily, and sleeps a lot. But, he has his smile and his personality back, and laughs at the antics of his bigger brother and his funny, bearded “orang putih” Uncle.

    In the past two weeks, he has remembered how to “salaam,” wave “bye-bye,” “blow a kiss,” and recovered the coordination necessary to raise a spoon or fork with a bit of food to his mouth without spilling or sticking it in his eye or ear. Eating however, for him, has never been a problem and those were moves he had no problem “remembering.”

    Just yesterday, he gained enough confidence, and leg-strength, to let go the steadying hand and walk from Aunty to Uncle with some degree of self-assurance and without too much wobble. He still prefers, if the furniture is placed right, to walk along with a steadying hand on a wall or furniture, whenever possible.

    He is the only small child the cat will allow to come within range of fang and claw and touch or pet him with impunity. In fact, when napping, the cat has a tendency to leap up on the bed and curl up behind his knees for comfort; a gesture heretofore reserved solely for his mistress.

    He has always had the big, brown, deep eyes of a bright, wise and curious, little boy; hence the name “Little Prince.” He has recovered this look, deep, intense, mysterious and wise; yet I see something else in there which I think we share; he has seen his snake, and knows him for who he is.

    December 30, 2007

    A much belated update:

    Following his return home, Awal continued to recover his faculties and develop the new ones expected of a normally developing one and a half year old infant.

    That is, the first week in August when he developed “tummy aches.” Cramps, a tender belly, and began vomiting everything which he ate. A fever ensued.

    Back in Doctor’s office, “gastritis” was diagnosed and he was treated for “tummy upset” for a few days, until it became apparent that the patient was not responding and the problem ran deeper than gastric upset and “normal” diarrhea..

    Ultimately, it was determined that he had an infected shunt. He was readmitted, with an infected shunt, on the 6th of August, and an anti-biotic series was started.

    Dr. Ben was called in and consulted. Four days later, on 10 August, with Awal’s coordination and responses rapidly deteriorating and his fever soaring, he took Awal into surgery and, he and his worthy colleague Dr. Kumar, pulled the shunt.

    It was found to be infected from end to end, and left the child with an infection, not only at both ends of his body, but all along the channel in which the tube had been run. He was not a happy camper, and he was in a critical state.

    Fortunately, a series of specimen and blood analyses quickly identified the virus and bacterial invaders and prescription for treatment was immediately introduced.

    A week later, he was discharged, infection-free, sans tumor and sans shunt, with a prayer that he had not become shunt dependant. Follow-up imagery would determine that.

    Three days later, new imagery disclosed that a subdural pocket of fluid was forming along the fore left-quarter of his brain just under the dura.

    Dr. Kumar took him into surgery on 24 August, and installed yet another shunt, subdural, in the fore left quadrant of the skull. The response was almost immediate! Awal’s instability and uncoordination began to clear in a matter of hours and, five days later, on the 29th, all signs normal, he was discharged with a 3 inch plaster on the side of his head and a new tube running down to his tummy.

    At home, he got back into his walking, talking, spoon and fork coordination program, and seemed to be progressing beautifully.

    Hardly a fortnight later, on 8 September, he again exhibited “tummy cramps,” vomiting, and the dreaded diarrhea. A very sick and tired little fellow, he was readmitted, once again, for treatment of an infected shunt.

    Consultation with Neurosurgeons Drs. Ben and Kumar persuaded us of the dangers, and the questionable wisdom, of replacing it with yet nother shunt (any shunt, particularly another “new” one still suffers the same degree of risk of an infection), and we decided on an intensive antibiotic regimen to identify and treat the infection(s).

    It was decided to keep him in hospital under a rather severe discipline of anti-biotics and semi-isolation, until we were assured that he was infection-free and that his infections had been identified, and treated well beyond the point of possible recurrence.

    Eleven days later, September 20th, he was discharged, alert, coordinated, confident and eager to get on his feet and walk, jabbering nonsense and the few new words he was mastering, eating and retaining, and discharging normal body waste!

    By that time, he was only too familiar, bored, and disgusted with hospital routine. He rebelled! He began begun to shun and lose his friendly smiling attitude toward the uniformed nurses who came into his room, only to hold him down and immobilize him in order to pole things into him, up him, and force stuff down his throat, painful indignities he wished to have no more of!

    Ununiformed doctors who came to call, probe, and discuss, he was became able to identify immediately as they came in the door and, properly attributing to them the source his trials, he scorned and refused to return their greetings, refusing to look at them or respond to their attentions. His typical response was to sit, head and eyes lowered, and pretend that they were not there, thy were not talking to him.

    I considered his rude and inhospitable attitude toward those who were doing so much to help him as good, and healthy, signs that he was maintaining the strength his personal dignity, freedom of person, and the ability to fight back and not submit to the bullying of medical staff in spite of the medical trauma he must have been experiencing as the consequence of his medical problems.

    Survival, in many cases, depends not only on the strength but also the will to fight back. He was a fighter! A small one, but fierce in his own way! I recall the many times he bit me, fiercely, while trying to pry his jaws open to administer oral anti-biotics. His new teeth were as sharp as blades.

    Note: At home, we found it no difficulty at all to smuggle anti-biotics into him in his glass or bottle of juice, water or milk. In hospital, staff do not seem to have the time or patience required for such time consuming efforts and concerns for the patient’s equanimity, peace of mind or comfort.

    For more than a month he recovered at home. A brief trip to have his stitches removed… the patch on his head came off, and his hair began to grow in to such an extent that the patchy scraggle growing irregularly from three major surgical events into his skull had to eventually be trimmed to uniform lengths.

    His recovery walking, climbing onto and down from furniture and beds was remarkable. An eager learner, he studied mouths to see how, exactly, new words were formed, and practiced the lip and mouth movements silently until he was sure he had it correct, then, “Up!” “Mak!” “Nak!” All in the imperative voice!

    He mastered “Twinkle, Twinkle Little Star,” if not all of the words, at least enough of them, and the tune and rhythm, that anyone who heard him sing had no problem identifying his song.

    He became a dancer, and loved to stand, hold onto Uncle’s hands, and jitterbug to my original “Boogie Woogie,” music old enough that many of you will not know it.

    He is becoming a chatter-box. New words, old words, some with and some without meaning except to himself. In other words, a normal infant, growing rapidly into a normal little boy!

    Recently, a week or so ago, during the Christmas holiday when doctors are not available, he began to stumble, at first shunning the helping hand, later reaching for it and, soon, looking and reaching up and, imperiously shouting, “up!” he would demand it. Thankfully, he does not beg! He is still fighting!

    He no longer walks unless held by both hands, and he stumbles badly, although he jumps and jiggles, laughs and tries to dance with me.

    An MRI taken on the 29th of December shows four excessively extended ventricles.

    We have consulted, again, and on Monday are going for second and third opinions. At the same time, we will be considering other medical teams and facilities.

    Awal is a special child, a true Little Prince, and he is in The Best Of Hands, we know. I have friends of all races, nationalities and Faiths, including No Faith agnostics and Athiests, praying for him, lighting candles, burning joss, casting stones into rivers or whatever it is that other people do. Allah may not require such help, but I am sure He hears them all and, in His Infinite Love and Mercy, He will respond in whatever way He deems best for our little one.

    We ask of you, your prayers for Awal Ambia. All else is in The Best Of Good Hands.

    Assalamualaikum,

    Earlaiman, Nek Rosmala, Mother and Father, Nazri and Zeenat, and of course, Awal Ambia and Abang Adam.

    Balas

  7. Earlaiman Abdullah gale
    Jan 01, 2008 @ 08:54:10

    Awal Ambia

    01 Jan 2008

    He is being admitted at HUKM this afternoon for a ventricular endoscopy tomorrow by Dr. Azizi. An attempt will be made to open a drain in the membrane below the upper ventricales. MRIs show no abnormalities other than the enlarged ventricles so, barring any unexpected complications, optimism prevails.

    Salaam,

    Earlaiman

    Balas

  8. Kate Lee
    Nov 18, 2009 @ 21:30:33

    I found your blog on Google. I’ve bookmarked it and will watch out for your next blog post.

    Balas

  9. Earlaiman
    Mac 30, 2010 @ 12:26:16

    March 30, 2010:

    Awal Ambia subsequently had a hole punched in the bottom of his ventricular chambers which opened a natural drain but it did not last long, and he later required another and new hunt.

    This one worked beautifully, but, he had hardly recovered his coordination, learned to walk, once more, and then infection set in again!

    By then, after consulting with second and third opinion doctors, we had moved him to the care of Dr. Azizi at HUKM.

    Yet another shunt was installed, but it lasted only a few months before it, too, infected and had to be removed.

    By now, Awal was becoming quite blase about hospitals, surgery theaters, and waking up with his head swathed in plasters and bandages.

    Upon removeal of this shunt, we consultedon the advisability of waiting a fdew days to determine whether a shunt was absolutely necessary anymore,

    After a few days of continuing recoveri y without a new shunt, and CAT scans showing no enlargement of the ventricles, we decided to let him go home withut a shunt, and we would wait ans see what happened.

    this was over a year ago.He is shunt free to this day, and continuing to d grow and develop.

    He still manifests some slow development, he is four and seldom talks, although he can sing, and carry on simple conversations when he “wants to.”

    He is a curious and fast learner, has memorized dow zens of songs, and n has rcovered abut 100%of hos cordinaton and balance. He plays foootball, and has developed a mighty kick.

    In Earl January 2010 he exhibited some minor facial tics or spasmaa, which impaired his speech and eye control. Dr. Azizi advised that this was not an unusual or unexpected consequenceof the trauma his brain had undergone, and residual scar damage. But,it is moo inor, and rthge spasmas have been controled by a mild dedication, something whichhe can liveiwht if he haqs tro , and something which a child of his age and general stron health has a good chance ot outpgrow and leave behind him.

    So, if nothing is broken, swe shall not try to fix it, for now.

    Awala continues to grow, to become more loveable, and loving, and speciala in the eyes of all of yus as he develops and matures. We will soon have tro start looking for a c school form him.

    Due to family circumstances, and other considerations, His Great-Aunt, Rosmala and I have adopted him now, and we are seeing to his care full time.

    Inshallah there will be nothing more to report, but i shall look in here from time to time and add any informaton which develops.

    Earlaiman

    Balas

  10. Earlaiman
    Dis 19, 2011 @ 11:17:48

    December 19, 2011

    An Awal update.

    In the summer of 2010, Awal, shunt free for many months, began to experience petit mal seizures, usually manifested as facial tics, twitches, and on occasion, convulsion of arms and or legs,.

    He was put on anti-seizure medication and placed under observation of Drs. Azizi and Juanita, and the Pediatric Department at HUKM.

    We found his treatment by the Doctors and staff at HUKM to be excellent, with excellent results in all respects.

    At the same time he began to exhibit tenderness and swelling in the area of his last shunt. Further MRI studies showed a small piece of tubing and a mass of inflamed tissue sub and extra dural in the area.

    Further surgery was performed to remove the tubing and the inflamed and affected tissue.

    Following an intensive and prolonged anti-biotic treatment involving six or eight weeks of daily infusions via a long tube IV he finally recovered from the inflammation, and over the following six months was weaned from the anti-seizure medication.

    At the same time, he was diagnosed as mildly autistic by his Child Guidance Councillor, Dr. Juanita, at HUKM.

    He has now been shunt, and infection free for sixteen months, and physically a strong, healthy and growing boy… with mild symptoms of Autism.

    His speech development has been evaluated as about two to three years in arrears, which coincides closely with the months lost fighting brain tumor, shunt and tissue infections.

    Currently he is attending half day, five days a week Child Guidance and Development training in a private environment, and progressing quite well.

    He is definitely autistic, and manifests speech and response difficulties. He has learned numbers, colors, the alphabet, shapes, mastered simple oral communications techniques, and is still developing rapidly, showing impressive development weekly.

    He loves music, and has memorized dozens of songs, in English, Bahasa and Arabic, as well as his prayers. He is studying numbers and the alphabet in Spanish on his bi-lingual children’s “learning laptop.”

    Physical strength, dexterity, motor skills, coordination and balance are excellent, and, he has mastered the functions of his cellphone, sans SIM Card, on which he plays a selection of his own music, computers, on which he can boot , load and seledc his “learning” and Disney Entertainment genre CDs and DVD, and the operation and management of the TV for his permitted Disney Junior programs.

    He loves books and can do simple spelling, which he has been observed practicing in private… not well enough to demonstrate yet. He displays none of his academic or vocal achievements until he has mastered them with confidence that he can do them correctly.

    For example, he will mouth new words for days, and then use them in a “small’ and tentative voice for a few days, until he sees that they are correct, before they become part of his “big voice” lexicon, and daily usage.

    He has also learned, by observation, the processes for finding and getting down the keys to the house, opening locked doors, “beeping” and opening the car, and was stopped only short of car theft by his Mommy who heard the car beep and found him out side, in the driver’s seat, attempting to insert the key into the ignition. Fortunately, we have an ignition lock on the car which requires a key he knows nothing about.

    He is, aside from his communications difficulties, a normal, active, curious precocious, healthy and loving little boy.

    The outlook that he will be able to attend and benefit from “normal” schooling in a couple of years at his rate of development is, so far, hopeful.

    He will be six years old in January 2012.

    Earlaiman

    Balas

    • Kamal
      Apr 07, 2014 @ 08:36:38

      May I know the name and contact number of the centre that you sent your child for therapy.Thanks in advance.

      Balas

  11. Carol
    Okt 05, 2012 @ 09:22:13

    Appreciate your sharing. Very informative. Wish him healthy and happy always

    My father in law, had an infected shunt, removed 29 oct 2012. Experience similar situation.

    Balas

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