Nurul Islah’s Adventure

Chronicles of a brain tumor survivor

Archive for July, 2007

Week 16th – 22nd July 2007 – The Joy

Posted by Mohd Shah on July 24, 2007

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!!

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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.

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

 

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Week 16th – 22nd July 2007 – The Pain

Posted by Mohd Shah on July 24, 2007

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.

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Hope for the future

Posted by Mohd Shah on July 19, 2007

Chemical ‘Paint’ Helps Surgeons See Cancer’s Borders
07.16.07, 12:00 AM ET MONDAY, July 16 (HealthDay News) — Researchers say they’ve developed a tumor “paint” that illuminates cancerous cells and help surgeons spot the borders of tumors.A team at Seattle Children’s Hospital Research Institute and the Fred Hutchinson Cancer Research Center found that the paint — a protein derived from scorpions called chlorotoxin — helped surgeons distinguish between brain tumor cells and normal brain tissue during surgery.

“My greatest hope is that tumor paint will fundamentally improve cancer therapy. By allowing surgeons to see cancer that would be undetectable by other means, we can give our patients better outcomes,” study senior author Dr. James M. Olson said in a prepared statement.

The findings are in the July 15 issue of the journal Cancer Research.

Chlorotoxin is linked to a molecular “beacon” called Cy5.5. The use of chlorotoxin:Cy5.5 improves the likelihood that surgeons will be able to remove all cancerous cells during surgery without damaging surrounding healthy tissue, the researchers said. This is especially important for brain cancer patients. About 80 percent of malignant cancers recur at the edges of sites where tumors have been surgically removed.

Until now, there has been no way to allow surgeons to “see” tumors during surgery.

The researchers also noted that current technology, such as MRI, can distinguish tumors from healthy tissue only if more than one million cancer cells are present. Chlorotoxin:Cy5.5 is able to identify tumors with as few as 200 cancer cells, which means that it’s 500 times more sensitive than MRI.

The tumor paint has been successfully tested in mice, and pilot safety trials have been completed. The researchers are preparing required toxicity studies before they apply to the U.S. Food and Drug Administration for permission to begin human clinical trials with the tumor paint.

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Brain tumor cannot hold ambitious teen back

Posted by Mohd Shah on July 16, 2007

Home News Tribune Online 07/15/07 Post a comment. View latest comments.

By ERICA HARBATKIN
STAFF WRITER

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eharbatkin@thnt.com SPOTSWOOD — Sometimes the tumor in Dan Hohman’s brain makes him forget things. Most of the time he’s really tired. The brain surgery he had in 2005 had side effects — he doesn’t produce enough of the growth hormone that allows other people to function from day to day.


But come fall, the 18-year-old Spotswood High School graduate will be moving away from home and into the dorms at Caldwell College in North Jersey, where he’ll study social work so he can eventually help families with kids like him.

“I’m nervous about just being able to keep grades up and being able to have the energy because I’m still falling asleep sometimes,” Hohman said.

He’ll be going to Caldwell on his own while his identical twin brother, Michael, goes to Kean College to play baseball.

Dan Hohman loves baseball. He and his brother were two of the best players on their Little League team. At that time, the tumor in Dan’s brain actually gave him an advantage — its placement near the pituitary gland caused him to go through puberty at age 6, making him much bigger than the kids he was playing against.

“When I was 8 they said I had a 12-year-old body. I was a giant in school,” Hohman said. “At the time I loved it.”

But he hasn’t grown much since. Now he’s 5-foot-6 and isn’t likely to get much taller. The medicines he took as a child to slow the growth of the tumor also slowed his own growth, and now his body doesn’t produce enough growth hormone.

He’s also legally blind in one eye. The tumor, located on the optic nerve, stripped him of most of the sight in his left eye.

That’s how his mom figured out something was wrong.

“He wasn’t seeing what his twin was seeing,” said Kathy Hohman, the twins’ mother. “We were at (Six Flags) Great Adventure and there was a balloon in the sky. Michael was watching the balloon and Danny couldn’t see the balloon at all.”

So then they started pointing out other objects at a distance, asking 5-year-old Dan if he could see them. He couldn’t. Kathy Hohman brought her son to the hospital, where Dan was diagnosed with a brain tumor.

The chemotherapy came next. He spent a year undergoing chemotherapy at Childrens Hospital of Philadelphia, until he developed an allergic reaction to the drug and had to stop.

“I ended up swelling up like a balloon and getting a rash,” Dan Hohman said.

But by then, the treatment had shrunk the tumor enough so that it wasn’t affecting Dan’s life. He was blind in one eye but he somehow still had enough depth perception to throw a baseball over the plate. He went through elementary school and middle school without any problems.

The headaches started freshman year.

Dan had been receiving regular magnetic resonance imaging scans of his brain — first every three months, then every six months, then every year. But shortly after one of those tests came back normal, the headaches were becoming worse. Kathy Hohman took her son back to Children’s Hospital of Philadelphia for another MRI.

“While he was in getting scanned, his doctor came out to me and took me aside and said, “Come here — I want to show you something,’ ” Kathy Hohman said. “We went into the room where they were reading the MRI and he showed me this big black area in his brain.”

The big black area was cerebrospinal fluid. It was leaking into his brain instead of flowing into the bloodstream like it’s supposed to.

The condition is called hydrocephalus, which means “water on the brain” in Greek, and affects about one in every 500 to 1,000 children, according to the Hydrocephalus Association. In Dan’s case, it was caused by the tumor growing cysts, which blocked the flow of spinal fluid by compressing the brain’s ventricular system.

To treat the condition, doctors implanted a silicone tube — called a shunt — running from Dan’s brain down to his stomach. Without it, cerebrospinal fluid would accumulate inside his brain, compressing the brain stem and eventually killing him.

Dan underwent eight different surgeries in the six months after doctors implanted the two shunts. The shunts became infected and then blocked and then infected again before doctors were able to make everything work. Now only one is in use, but it’s been working well ever since.

“It’s really small and unless you really look for it you don’t even know he has it,” Kathy Hohman said. “To an untrained eye, it looks like he’s got a mosquito bite or something like that” on the surface of his head.

For more than two years after the shunts were implanted, everything was back to normal again. Dan Hohman continued to play baseball — although his brother and many of the other boys surpassed him as they entered puberty and Dan stayed the same. Dan pitched for the JV team while Michael moved up to varsity, becoming a star pitcher and second baseman.

“It’s sometimes frustrating because my twin brother and I have both been really good and now he’s just awesome,” Dan said.

During their sophomore year, Dan’s tumor started growing again. But the growth created an opportunity that wasn’t there before — it moved the brain a little and gave doctors a pathway to operate.

“When he was first diagnosed we were told it was inoperable because it was deep-seated,” Kathy Hohman said.

When the tumor grew and moved the brain a little, everything changed.

“My oncologist called it a window of opportunity because it made it possible to take out part of the tumor,” Dan said.

But first, Dan wanted to finish out baseball season and his sophomore year. In the final months, he could feel the tumor affecting his brain, making him forget things he shouldn’t have been forgetting.

He performed poorly on final exams, and then forgot he’d ever taken final exams.

Doctors at New York University performed Dan’s brain surgery in June 2005. They removed 70 percent of the tumor — enough so the radiation doctors had planned wouldn’t be necessary.

When Dan woke up from surgery his short-term memory was shot.

“In school, at first, I’d forget everything from day to day. The teacher would say one thing and then she’d say something else and I’d forget that first thing she said,” Dan said.

It’s gotten easier since then. He still forgets things over the weekend, and details like dates are hard to remember.

That’s when the memory loss is especially frustrating — when hours of studying don’t do any good at all. Sometimes his brother Michael helps, but that’s not always a solution, either.

“We’re in a bunch of the same classes,” Dan said. “He doesn’t study for a test and gets a pretty good mark and I’ve been studying for hours and get a lower mark.”

Despite the challenges, they’ve both graduated. The family just took a trip to San Francisco for the MLB All-Star Game.

Dan is still tired all the time, and he still struggles with his short-term memory, but he’s making it work.

“He used to be very, very sociable and friendly and everybody knew who he was,” Kathy Hohman said. “Everybody still knows who he is, but it changed after the surgery because of his tiredness.

“He knows he’s different,” she added. “Every once in a while he’ll say, “I wish I could get the old Danny back.’ “

He’s getting an MRI on Tuesday. If it comes back normal, he won’t have to get another MRI for an entire year.

Dan won two college scholarships — a $7,250 award from Little Rock Foundation, for blind and visually impaired children; and a $500 award from the Hydrocephalus Association. He just received his roommate assignment for the dorms.

“I’m excited,” Dan said, thinking ahead to his looming move out of the house. “I’m nervous. But I’m excited.”

Lifted (with thanks) from : http://www.thnt.com/apps/pbcs.dll/article?AID=/20070715/NEWS/707150460/1001

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Over the weekend – Motivation Camp & Concert

Posted by Mohd Shah on July 16, 2007

On Saturday (14th July 2007), Kak Cik attended a motivation program and a concert organized by Kelab Peminat Nazrey Johani. Nazrey is former lead singer for the infamous nasyid group Raihan. He’d just launched his new album entitled ‘Syahadah’. Kak Cik’s favorite song from the album is ‘Nasihat buat adik’.

The program was co-hosted by Akhwan Affandi who had fantastic rapport with the children.

Kak Cik with Akhwan

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Iqbal (Islah’s elder bro) & Nazrey

 

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Hanan (Islah’s younger sister) & Akhwan

 

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Kak Teh (Islah’s elder sister in pink tudung), her classmate Mawaddah posing with Nazrey Johani

 

 

 

 

 

 

 

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Back to School

Posted by Mohd Shah on July 12, 2007

Alhamdulillah. Kak Cik started to go to school yesterday (11th July 2007) to the delight of her classmates and teachers.

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Today her classmates presented her with a fruit basket. Thank You.

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Meeting the Astronaut

Posted by Mohd Shah on July 9, 2007

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It was a special day again yesterday (8th July 2007) for Kak Cik and our family. It may seems trivial but Kak Cik once said that she wanted to be an astronaut. So, in order to boost her morale we managed to secure an appointment with Dr. Sheikh Muszaphar Shukor at his Rebung Restaurant in Bangsar. He then autographed the above photo for Kak Cik.

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Prologue (14th June – 7th July 2007)

Posted by Mohd Shah on July 9, 2007

To give a proper perspective to the future postings, we would like to briefly explain the events that have occurred so far;

SYMPTOMS like severe headache, vomiting and blurred/ double vision only appears after 2nd June 2007.

14th June 2007 (Thursday)

Nurul Islah @ Kak Cik undergo a CT Scan at Columbia Asia Medical Center in Seremban.

Dr. Rosdi of Klinik Anjung Karisma in Seremban 2 broke the news to us that the mass shown in the image is a tumor.

Went up to Hospital Kuala Lumpur (HKL) to meet a Neurosurgeon Dr. Kantha. The meeting was arranged by Dr. Dilshaad Ali, a good friend from my MERCY days. Dr. Kantha confirmed that there is a tumor at the Cerebellum and it has blocked the Cerebrospinal Fluid (CSF) therefore causing Hydrocephalus and thus the symptoms.

15th June 2007 (Friday)

Kak Cik underwent a surgery in HKL to put in place a shunt‘ that’ll divert CSF to her abdomen. The surgery which lasted for about 1 hour (from 8pm) was successful in reducing the Hydrocephalus.

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She was in ward 6B, Institut Kajisaraf Tuanku Abdul Rahman

16th June 2007 (Saturday)

Special prayers session was held in Salina’s (my sister) house in Bangi. Thank you.

18th June 2007 (Monday)

She’s not yet discharged but was allowed to return home (on leave).

Went to Pusat Perubatan Syifa’ Al Hidayah in Gombak. Hj Lokman prescribed two group of verses from Al Quran for us to recite daily;

  • After Solat Subuh : Hud (11) Verse 60 – 70
  • After Solat Maghrib/ Isya : As-Syuaraa (26) Verse 185 – 206

20th June 2007 (Wednesday)

MRI was done at about 7.30am. She was then discharged at about 3pm.

Today I was rather disappointed with one particular Oncologist at the Paediatrics Institute of HKL. I might want to write a bit about this incident later on.

Today also we took delivery of some products and apparatus to facilitate the application of Gerson’s Therapy on Kak Cik. Insyaallah, I will write a special page about this particular therapy

21st June 2007 (Thursday)

Met with Dr. Kantha to discuss the result of Kak Cik’s MRI yesterday. Briefly;

  • MRI can only indicates the size, form and location of a tumor. It cant confirm the type of tumor. Only after surgery they can do so by doing laboratory tests on the tumor tissues
  • From the look of it, a major surgery will have to be performed to remove the tumor.

We are however very grateful to Dr Kantha for taking his time to explain about the situation and for being understanding about our anxieties. He allowed to go home to seriously consider the situation and maybe get a second opinion before committing to the surgery.

23rd June 2007 (Saturday)

Today is a special because Nur Baiyyinah, our eldest daughter is enrolling into the Foundation Studies (Matriculation) of International Islamic University of Malaysia’s law program in PJ. She had always wanted to be a lawyer and to study in IIUM.

Today, we were also referred to a top Neurosurgeon in private practice for a second opinion. He was very nice and sincere but his analysis of the MRI was very nerve wrecking.

He said that he’s almost certain that the tumor is Medulloblastoma, a malignant and fast growing tumor. He also said that without surgery, it could be just matter of weeks before Kak Cik’s survival will be at stake. He however mentioned that the success rate of such surgery is about 90% but the 10% failure rate plus the associated risks are also very real.

A special family meeting organized in my parent’s home that nite concluded that;

  • Whatever decision that I & my wife make, they will support
  • though the surgery carries significant risks, the option not to do it is also very risky

25th June 2007 (Monday)

Met with Dr. Azizi Abu Bakar, a highly recommended Neurosurgeon in HUKM. He explained again about the surgery and we finally agreed to proceed. It was then scheduled that the surgery will be on 4th July 2007. It was however brought forward to 2nd July 2007.

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