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!!

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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.

 

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.

Hope for the future

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.

Brain tumor cannot hold ambitious teen back

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

Over the weekend – Motivation Camp & Concert

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

 

 

 

 

 

 

 

Back to School

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

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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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