Saturday, December 27, 2008

AVM news, and a little me too.

James gets all-clear after haemorrhage

By Lindsey Newton
Christmas was extra special for one Thetford boy, who has been given the all-clear after a brain haemorrhage.
James Richardson, four, of St Audrey's, Thetford, suffered a brain haemorrhage the size of a plum caused by a rare condition – Arteriovenous Malformation (AVM) – in which malformed capillaries cause tangled blood vessels.

The bleed, was diagnosed on October 8 after staff at Play Days Nursery, in White Hart Street, Thetford, noticed he was feeling unwell and took him to see a GP. It took four hours of surgery at Addenbrooke's Hospital, in Cambridge, to remove.

James' mother Liz Richardson, 34, and her husband Paul, 39, praised the nursery's actions and their son's bravery.

Mrs Richardson, said: "Seeing James looking so unwell and lying in a hospital bed was unbearable and I have blocked most of it out because it was so traumatic.

"My brother died from a brain haemorrhage six years ago and even though the two conditions weren't related, it didn't stop me worrying.

"It was difficult to explain to James what was going on, but after the operation we said the doctors had taken his headaches away."

"My six-year-old daughter, Kate, found it really hard."

She said the family was grateful to Acorn House, which is run by The Sick Children's Trust, which let them stay while James was being treated, and wanted to thank everyone who had helped them.

"It has been really tough, but I am so pleased James has been given the all-clear," she added

James has recovered so well his surgeon does not want to see him for another six months.

James' grandfather Brian Fisher, 67, of Old Market Street, Thetford, said: "He was tremendously lucky and we have been looking forward to spending Christmas together."

Mrs Richardson is now planning to raise money to say thank you to Acorn House and the Paediatric Intensive Care Unit at Addenbrooke's Hospital.


Oh boy , do I have a hangover! So I'll be keeping this short....
I was victim of a party last night. I only had three drinks... but oh do I feel them now!

Friday, December 26, 2008

I love this stuff.... sorry.

December 21 2012 the END?

part 1 of 6...
December 21 2012 the END?

part 2 of 6
There are 4 more... If you want to see them go to youtube.

I got one... a great one!

Influence of MMP on Brain AVM Hemorrhage
This study is currently recruiting participants.
Verified by University of California, San Francisco, October 2008
Sponsored by: University of California, San Francisco
Information provided by: University of California, San Francisco Identifier: NCT00783523

Brain vascular malformations, including arteriovenous malformations (AVM), cavernous malformations (CVM) and aneurysms, are a source of life-threatening risk of intracranial hemorrhage. The etiology and pathogenesis are unknown. There is no medical therapy presently available. Prevention of spontaneous intracerebral hemorrhage (ICH) is the primary reason to treat brain vascular malformations. The goal of this study is to: begin pilot studies to lay the groundwork for future clinical trials to develop medical therapy to decrease ICH risk.

Matrix metalloproteinases (MMPs) regulate the extracellular matrix in association with various hemorrhagic brain disorders. MMP-9 has been most consistently associated with vascular wall instability and hemorrhagic brain disorders. Doxycycline, a non-specific MMP inhibitor, may enhance vascular stability, thus reducing the risk of spontaneous hemorrhage in brain vascular malformations by decreasing MMP-9 activity.




I've been looking for a clinical study to join. I am so sick of not knowing what to say, when in a conversation. This one doesn't cover that, but it shows that I'm on the right track.

So did you have a good Christmas!
I hope so.
okay, I gotta go.

Thursday, December 25, 2008

Two, plus stuff

With Condolences...

We've spent this week thinking about our friend and fellow music critic Tim Finn over at the Kansas City Star. Our hearts went out to Tim when we heard that his wife, Lauren Chapin, restaurant reviewer for the Star, suddenly collapsed while working out at the gym on Monday from what turned out to be a ruptured aneurysm. We learned this morning that she died on Wednesday. She and Tim have two teenage daughters.

Pitch restaurant reviewer Charles Ferruzza posted a tribute to Lauren this morning on Fat City. We at the Wayward Blog send our condolences to Tim and all the Finn-Chapin clan.



Sometimes the Lord just stops me and reminds me of how much I have to be thankful for! That happened recently when DH read this. A Kansas City food critic died of an AVM. I am so thankful that God's grace protected me and my AVM was removed. May we all take time this season to be thankful....for so many things....for life....for a Savior....for His grace!

Merry Christmas!
Yesterday I spent the entire day in BED! It felt real good!
My youngest son is having surgery tomorrow... it is for a bad tooth. The infection he had moved into his sinus. It ain't good.
Pray for him....

Well I have to go... Merry Christmas.

Monday, December 22, 2008

News about AVM's

Dream a Little Bigger



Yesterday I saw open grief at a memorial service for a friend. I can’t tell you how refreshing that was.

Photographer and Kansas City Star restaurant critic Lauren Chapin had just turned 50 when she basically dropped dead at the gym. Lauren was a trim, energetic, happy wife and mother of two teenaged daughters she adored.

She was in perfect health, everyone thought. But she had a previously undiagnosed condition, an aneurysm/AVM. The first symptom proved fatal.

At Lauren’s 100-percent no-BS memorial service, I saw tears, confusion and longing. A little regret that there was no time to say goodbye, no time to at least try to express the inexpressible.

Because of the family’s generosity and the quick action of doctors, Lauren’s organs went to desperate patients somewhere. The family was grateful for this thin silver lining.

I did not see anger. I did not hear rationalization. I did not sense false optimism.

One daughter said: Mom, I thought you’d live to be 100. The other said: Mom, I thought you’d live forever. Several people said: Don’t forget to tell people you love them. Don’t forget to give your loved ones hugs and kisses every day.

A friend told how Lauren’s cell phone was constantly ringing, and how annoying the chirping-birds ringtone could get. Breaking down, she added: What I would give to hear those birds again.

Some five years ago Lauren’s husband Tim lost a younger sister to cancer despite the complete absence of risk factors. Tim’s 39-year-old sister lived just five months after her diagnosis. A story from Tim’s eloquent eulogy for his sister ended up in my blog a few months ago: I’m Too Special to Get Cancer.

A pancreatic cancer patient spoke of an invisible wall. She could see her brothers and sisters at the foot of her hospital bed. “I don’t want to be on this side of the wall,” she said. “I want to be on the other side, with all of you.”

Yesterday at Lauren’s service, the wish for some time to say goodbye was palpable. Even a few painful weeks. Our minds reject a model of illness so sudden and final. There’s supposed to be a dark cloud of symptoms, the anxiety of tests, the dread of the diagnosis and the slim hope of a second opinion.

Of course none of that would be a picnic, but it gives time. Time to hold someone’s hand in a doctor’s waiting room. Time to cry together. Time to look at old photographs. Time to tell stories and laugh. Time for final words to loved ones who will then take those words to their own graves.

We can’t accept illness as a dropping anvil, and then nothing.

And yet, she could have died in a car accident. Anyone can. So why does Lauren’s death feel so wrong, I asked a family member.

We decided it was because every day we buckle our seat belts. Every day we watch traffic. Every day we’re reminded we could be hit by a car that comes out of nowhere. But even then, we picture injury. Maybe life-threatening injury.

But we stubbornly cling to the idea of a few weeks or days—hell, even a few hours—to kiss loved ones on the forehead and say what a privilege it was to walk the earth with them.

Yesterday the irony of the moment seemed lost on noone. How could death come to someone so adventurous and embracing of the here and now? Lauren was not wealthy, but she found ways to study at Oxford during her college years and, throughout her life, travel the world.

One coworker told of a quick foray into a nearby shop of South American imports. Lauren and her friend went their separate ways in the store, but came back together holding the same pair of $149 boots. The friend, noting the high price, tried to inject some reason into the discussion, but Lauren finally ended it all with: “Life is short. We’re awesome. We deserve it.”

The grieving family did not get the chance to say goodbye to Lauren. But maybe Lauren was saying goodbye every day by the gutsy way she lived. As her sister put it, Lauren’s main legacy was: Say yes. Say yes to life.

As a proud contrarian, I’m known for my disdain of the positive-thinking dogma that’s rammed down everyone’s throat. But in Lauren’s honor, I’ll do a double backflip and be a contrarian on being a contrarian. Or at least I promise to try.

I will try to dream a little bigger. If Lauren were here, I’d bet she’d say, with a smile: I dare you.



That's Very Sad.... but it is sad for those we leave behind. For us, it is peace.
Don't worry I am not going to off myself. But I am just saying... it is peace. Regardless of where you get your info... it's peace.

I'm looking forward to it... the peace. If it is possible I will miss a good number of you... but we'll meet again. (maybe)

okay, I am going to go... buy some Kansas you punk! or don't...