Al Fatihah

Lebih kurang pukul 5 pagi semalam, Jumaat (17 Okt 2008), berakhirlah perjuangan adik Danial dan kembalilah dia ke Rahmatullah dengan penuh ketenangan. Beliau berumur 9 tahun. Mula dikesan mengidap Non-Hodgkin Lymphoma pada umur 2 tahun setengah, beliau telah berjuang dengan penuh bersemangat menjalani pelbagai rawatan yang disediakan di wad Pediatric Oncology PPUKM. Namun begitu ALlah SWT lebih menyayanginya dan kini beliau berada ditempat istimewa yang tersedia untuknya.

Saya mendapat tahu tentang pemergiannya semasa berada di Johor Bahru semalam melalui SMS ringkas dari sdr Amri, ayah Allahyarham. Petang tadi saya, isteri serta adik saya Salbiah & suaminya Mohd Amin sempat menziarahi keluarga istimewa ini di Kg. Sg. Layang, Rembau, NSDK.

Al-Fatihah

BLOG DAPAT NAFAS BARU

Setelah menyepi selama 10 bulan+, maka kami kuatkan hati untuk meneruskan blog ini. Sememangnya rasa rugi besar betul bila perjalanan hidup Nurul Islah @ Kak Cik selama 10 bulan ni tak tercatat……walaupun kebanyakannya masih terpahat dalam memori.

OK lah, biar kami perturunkan peristiwa peristiwa penting yang dialami oleh Kak Cik selama tempoh ‘hibernasi’ blog ini;

Radiotheraphy (26 Dis 2007 – 13 Feb 2008)

Rawatan ini sepatutnya 30x tetapi dapat buat 29x aja sebab masa nak buat yang ke 30 tu mesin Radiotherapy tu rosak pulak. So, doktornya kata cukuplah tu sebab tak berapa significant sangat jika miss 1x macam tu

 

Chemotherapy (24 Mac 2008 & dijangka tamat pada Jan 2009)

Rawatan chemo Kak Cik adalah berdasar Protocol Packer yang menggunakan 3 jenis chemo drug ie. Cisplatin, CCNU & VCR sebanyak 8 pusingan yang setiap satunya selama 6 minggu. Jadi sekiranya tiada komplikasi yang serius maka insyaallah rawatan ini akan mengambil masa selama 48 minggu.

Alhamdulillah setakat ni nampaknya Kak Cik mampu menjalani rawatan rawatan tersebut walaupun dalam tempoh 10 bulan ni memang macam cabarannya. Insyaallah bila bila sempat nanti kami cubalah kisahkan semula cabaran cabaran tu.

 

Ayah & Ibu

Radiotherapy

Islah dah mula radiotherapy pada hari Rabu lepas (26/12/07). Masa tu masih dalam wad Ped 3 untuk rawatan jangkitan di jahitan shunt.

Mulai hari ini kami akan berulang ke HUKM untuk rawatan ini sebanyak 27x lagi.

New treatment for brain swelling

Being treated for a brain tumor is scary enough, but if patients survive the surgery, radiation and chemo, they often have to take daily steroids to reduce swelling that can occur in the brain.These drugs have the potential to cause a number of unwanted side effects, but now there is a new option that is much safer.

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‘);When Paul Glover was diagnosed with a brain tumor, he never thought he would still be alive ten years later, and doing so much.

“What everybody told me is, ‘Yeah, life is over, pretty much,’” said Glover.

After surgery and chemo, Paul’s outlook was good, but the swelling in his brain took a toll on his body and caused neurological damage. Paul had to take steroids to fight it, but the side effects were harsh.

“… I didn’t feel like living. I couldn’t walk and half the time I would fall,” explained Glover.

Steroids caused him to gain nearly 80 pounds, and even forced the avid hunter into a wheelchair. The drugs can also cause bone loss, muscle weakness and anxiety.

So Paul was thrilled when he heard about a clinical trial that was testing a new therapy to replace steroids.

HCRF is the first agent in 40 years that was developed for brain tumor swelling.

“We are getting good, good results with some astonishing results in certain patients,” said Dr. Nicholas Avgeropoulus, from the Florida Hospital Cancer Institute.

When injected, HCRF works by stopping fluids in the brain tissue and reducing pressure in the skull. It even helps the body naturally produce its own steroids to reduce the swelling, without the side effects.

“The quality of life is such an important and understated factor in patients going through cancer treatment,” explained Avgeropoulus.

Something Paul knows all too well, now that he is off steroids and on the new drug.

Glover said, “Getting off steroids was wonderful. I cannot describe it … a big deal!”

Patients in the clinical trial inject the drug two times a day, and side effects may include redness.

Right now, researchers are enrolling patients for phase three of the clinical trial at about 35 centers around the country.

As reported in WNDU.om

New software to create an interactive 3-D map of the brain

As reported in Technology Review today.

 

Researchers at Thomas Jefferson University Hospital, in Philadelphia, have developed software that integrates data from multiple imaging technologies to create an interactive 3-D map of the brain. The enhanced visualization gives neurosurgeons a much clearer picture of the spatial relationship of a patient’s brain structures than is possible with any single imaging methods. In doing so, it could serve as an advanced guide for surgical procedures, such as brain-tumor removal and epilepsy surgery.

The new imaging software collates data from different types of brain-imaging methods, including conventional magnetic resonance imaging (MRI), functional MRI (fMRI), and diffusion-tensor imaging (DTI). The MRI gives details on the anatomy, fMRI provides information on the activated areas of the brain, and DTI provides images of the network of nerve fibers connecting different brain areas. The fusion of these different images produces a 3-D display that surgeons can manipulate: they can navigate through the images at different orientations, virtually slice the brain in different sections, and zoom in on specific sections.

Currently, physicians typically view the images produced by MRI technologies individually, and they conceptually visualize what the images might look like combined. “Before this type of software package, I would put up an fMRI image and put up a regular MRI of the brain and try to match the two in my brain to try to get a 3-D sense of the right spot to make an incision,” says Ashwini Sharan, a neurosurgeon at the Jefferson Comprehensive Epilepsy Center.

 

Beautiful message from a sister

I received this message via email today and I think its very beautiful and meaningful.

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Assalamualaikum to both the very special parents,

Indeed you are very special in the Eyes of Allah SWT, because only the selected few will be tested in their faith and believe in Allah SWT.

As we all know, and believe, our time on this earthly world is very limited. In your case, Allah SWT allows you to enjoy the time and prepare both you and your other children about the limited time that Nurul Islah has. As Allah SWT wants us to do our very best to find the most possible cure for any illness, it is also another indication that we will need to prepare Nurul Islah about the need to cross over to the other life.

In our remaining time to motivate Nurul Islah to fight her disease, may I also suggest that both of you also prepare her about the life that is much better than now, to prepare her that she and you both will meet again in Jannah soon, and for everyone in the family to be ready to say good bye to this short world. May Allah SWT have mercy on both of you and her family, and most blessings will be the time and day when she will tell you that she is ready to leave this world, and look forward to meet you in the Hereafter. She has a role to play, too, that she will be the protector for her parents against Hellfire. And you both are letting go of her because you are grateful to Allah SWT for lending Nurul Islah into your lives.

May we visit you soon? May Allah SWT showers you both and your family patience and blessings, and happiness for knowing the good news from Allah SWT who bestows His promise to the believers who are acceptance of His trials.

-Rahinah

Family Caregiver Alliance

Ini adalah sebuah organisasi/ website yang penting untuk kita semua. Tak kiralah samada sebagai orang yang menjaga pesakit secara langsung atau ahli keluarga yang lain.Dalam kesibukan harian, kita selalu terlupa tentang penderitaan mereka yang dipanggil sebagai ‘caregiver’ ini.Di Malaysia ni ada ke organisasi yang sebegini? Kalau ada tolong beritau ye.Laman webnya ialah di http://www.caregiver.org/caregiver/jsp/home.jsp
	Who We Are Founded in 1977, Family Caregiver Alliance was the first community-based nonprofit organization in the country (USA) to address the needs of families and friends providing long-term care at home. FCA now offers programs at national, state and local levels to support and sustain caregivers. History More than 25 years ago, a small task force of families and community leaders in San Francisco came together to create support services for those struggling to provide long term care for a loved one who did not “fit” into traditional health systems: adults with Alzheimer’s disease, stroke, Parkinson’s, traumatic brain injuries and other debilitating disorders. The diagnoses were different, but the families shared common challenges: isolation, lack of information, few community resources, and drastic changes in family roles. The task force’s early efforts had three lasting results: the formation of Family Caregiver Alliance; the genesis of a statewide network of Caregiver Resource Centers; and the beginnings of a national movement to recognize the immense contribution of family caregivers to the long-term health care of the ill and elderly in our country. National, State and Local Programs In 2001, FCA established the National Center on Caregiving to advance the development of high-quality, cost effective programs and policies for caregivers in every state in the country. FCA serves as the lead agency in California’s statewide system of Caregiver Resource Centers and operates the Bay Area Caregiver Resource Center, in the six-county San Francisco Bay Area. FCA is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy.

Syukur

Alhamdulillah, segala pujian bagi Allah SWT. Minggu lepas Kak Cik kelihatan semakin stabil. Sakit kepalanya sudah jauh berkurangan dan tidur malam semakin lena. In fact, kami dapat bawa dia bersama ke majlis makan malam tahunan MERCY Malaysia di Hotel Istana pada 29 Julai 2007.

Namun bagi pemantauan secara objektif, kami bercadang untuk membawanya ke HUKM pada minggu depan untuk bertemu dengan DrAzizi, Neurosurgeon.

Doakanlah semoga beliau semakin pulih. Amin.

Week 16th – 22nd July 2007 – The Joy

Last week on the way back from Hospital Tawakkal, we had the opportunity to visit the Eyes on Malaysia at Tasik Titiwangsa. All of us really enjoyed it and to top it up – we had ice cream!!

 

 

 

During the weekend we went back to my wife’s kampung in Melaka. We stayed the night at my brother in law’s house at Kg. Sg. Kertah. Saturday morning we went to the beach and just look at some of the photos.

 

 

 

 

Alhamdulillah, all praises only for ALlah for letting us to enjoy these beautiful moments even during such trying time. Ameen.

 

Week 16th – 22nd July 2007 – The Pain

Sorry for not being able to update this blog for the whole of last week (except for the news articles that I picked up from the internet).

Alhamdulillah, Kak Cik was rather stable the whole week except for Tuesday nite (17/7) when she had one of the worst headache so far. It was a very frightening situation The headache lasted fo almost 1 hour before she calmed down (due to exhaustion) and fell asleep.

The following nite Alhamdulillah, the pain recur but not as severe as the nite before.  We believe this may have something to do with her sleeping position. Instead of lying down normally, we had asked her to lie on her left (the tumor is located on the right/ back side of her head). The following nite was even better when we managed to buy an extra soft, but firm pillow for her. We believe the pain was exaggerated by the  extra pressure due to her sleeping position and the pillow that she had been using.  So, subsequent nites until yesterday, though there are still headaches especially when she is going to sleep, she can still tolerate them.

But last week was also very scary because Kak Teh (Nursyahirah) had come down with severe headaches since the previous Friday (13/7). She had also seems to be always sleepy. Though Dr. Rosdi (Klinik Anjung Karisma) believes that its probably not tumor related, we were still very worried. So, to clear our mind we took her to Hospital Tawakkal to see Dr. Abu Salim, a Consultant Neurologist. Alhamdulillah after doing the CT Scan, he confirmed that there is no tumor at all and the headache could probably be of migraine. He gave some pills but they don’t seems to be effective.

So, yesterday my wife took her to see Dr. (H) Hanafi, a homeopathic practitioner in Paroi Jaya. IMHO, he gave a more plausible diagnose. He said that she is lacking in certain nutrients especially Silica and the headache is a manifestation of that since she is in the pre-puberty age (hormone changes etc kot?). So, we’ll see hows these homeopathic remedies work, Insyaallah.