Big fuss.

Two Chinese girls saw this snail on the sidewalk and stopped in their tracks, making excited, squealing conversation over it. They even pulled out their camera phones to take pictures. One picked it up and I thought she would pop it into her mouth for a snack, but she just moved it to the side of the sidewalk.
Since they made such a big fuss over it, I figured I would too. When in Rome...

Zara, Firhaf & Anita's daughter (from USA)

Sean takes a shot for Team Ireland

Left to right: Sean; Baruch (from Iraq), Firhaf (from USA) and Claudio (from Argentina).

Gaby having a blast with new Auntie Grainne!

Grainne & Gaby (from Colombia)

Brian in his standing machine.

Back on track

So yesterday the visit from immigration finished at about 3 pm. I guess everything was okay, seeing as we haven't been deported (yet). Afterwards, Michele said that we could go to physical therapy after all, and Brian spent about an hour in a standing machine designed to get his posture in a better position, since he sits in a wheelchair most fo the day. The next session will include more therapies, since yesterday's had to be abbreviated due to the time. 

Also yesterday, one of the doctors discussed Brian's lab results. His liver enzymes came back elevated. Sean researched his medications for side effects, and liver stress was a possible adverse reaction in four of his meds. He had also had a beer the night before his tests, so that probably didn't help either. They scheduled an ultrasound of his abdomen just to make sure there wasn't anything weird going on, like a tumor or something. He had the ultrasound today. Shane accompanied him and reported back that the ultrasound came back normal. Just to be sure, no more alcohol for Brian for the rest of the trip. Which means more for the rest of us. By the way, we've gone through all the duty-free vodka we brought, so it's off to the store! We were also happy to learn from the ultrasound that Brian wasn't pregnant!

The rest of the families here went into Beijing for the day, so we're on our own for the rest of the day. We're all planning on a trip into Beijing again tomorrow, Sunday. That should be a great outing for Brian. Sirach, who is from Iraq and here with his quadriplegic son Sirhan, said "you can't keep him in a room all day, never experiencing anything new. They may as well be in jail. The mind dies. He needs to get out and experience life!" We found that very wise advice, so we're going to take Brian with us into bustling Beijing, though it may be a bit overwhelming for him at first. 

Last night all the families here went to the "Social Room" for a little recreation. We played pool, air hockey & ping pong on the tables there and had a great time socializing. Team Iraq beat Team Ireland in pool only because both Shane and Sean scratched the cue on the last shot. Team Ireland would have won. So much for our mini-Olympics.

So far, no one's gotten sick. You know how when you're in a new country and someone always succumbs to Montezuma's Revenge or Delhi Belly or Peruvian Mudslide? Fortunately we've avoided the equivalent, which we'll call Chinese Dump-lings. We haven't been very adventurous in our food choices yet. Local eggs and "elaborate bacon" is about the extent of our culinary adventures. By the way, the ramen noodles here are really good. Shane & Sean are going back to Lotte Mart today for provisions. We'll see what gets brought back.

Tomorrow, Beijing City! Thanks for reading and stay tuned!

Explosions and immigration.

Today (Friday) Brian was up bright and early, bathed and just about ready when the doctor showed up with his troupe of nurses. We're trying to get him ready before they come by. Almost made it today. Brian is scheduled to get his first stem cell injection on Monday. Yesterday we had asked about getting some physical therapy for Brian, just to make sure he doesn't lose any of the mobility he has regained over the last three years. They said they would arrange physical therapy for him today. This morning, after the doctor's visit, Michele asked if we were ready to go to physical therapy, but then a few minutes later, she came back to inform us that all the patients' treatments had been cancelled today. "Immigration is coming" she said, and we are not allowed to leave the building. In fact, we have to stay on the same floor of the building. She also took our passports for immigration to inspect. 

So today is a day of rest for Brian and all the other patients here. Not much going on. We're not sure what is involved with a visit from Immigration, but evidently it's a big deal. Perhaps it has something to do with the periodic explosions we've been hearing all morning. For about 3 hours today, every few minutes would be a series of explosions from very nearby. One of the other patients' families assured us it was fireworks or the nearby bullet train passing. Since nothing has apparently been destroyed, we're going with that. Although why there would be fireworks at 11 am escapes us. I'll attach a recording I made of the explosion sounds; hopefully it will get posted on the website.

Brian is in a great mood today. He's a bit nervous about "the unknown," but who isn't? None of us really know what to expect in the days ahead. But Brian benefited greatly from talking to Juan, who is from Colombia. His daughter Gaby is here for stem cells for cerebral palsy which was acquired from a heart attack she sustained at only one week old. Juan encouraged Brian to have "patience and faith." He related the story of Carlos from Spain who left just before we got here. Carlos had his second stem cell treatment here for a massive brain injury that left him utterly paralyzed and non-communicative. Now he can move, stand with assistance, and communicate by pointing out letters on a board to make words!

Ignacio is another patient here from Argentina. He's about 3 and has a left-sided weakness from a brain injury also. His left arm was contracted and pulled tight against his body. After only his fourth stem cell injection, he can move his arm and lift & stretch it on command. Brian was greatly relieved to hear about the positive results that others have seen with the treatments, and is looking forward to Monday. 

We're planning another run to the supermarket later on. No doubt it will provide us with some interesting photo opportunities!

More to come!

Would you care to elaborate?

Big pizza. No so much.

What kind of bird is this for?

View from the hotel

Finally made it to Beijing!

Well, we finally made it to China! Interesting place! Susana, the patient liaison from Beike who met us at the airport, is usually the liaison for Spanish speaking clients. She was having a little trouble with English, so Sean was able to converse with her in Spanish. To land in China and have a conversation in Spanish twenty minutes later was... disorienting (get it? Dis-ORIENTing? Hahaha - oh, I crack myself up). We drove to the hospital where Brian is staying (about a 40 minute ride). Chinese traffic is completely insane. The traffic lines painted on the road are clearly what they do with extra paint, since the lines clearly have no function. You just drive wherever there's an opening. Whoever honks their horn the most wins.

The hospital is very different than what you might expect in a western country. There are about ten buildings in the medical complex; each has a different function. There's no dietary services, so if Brian wants to eat, Shane, Sean & Grainne must get it for him. So our patient liaison, Michelle, took Grainne & Sean to the Chinese version of WalMart, called Lotte Mart. That was an experience! Michelle glanced over at a package of some sort of meat Sean was inspecting and exclaimed with delight "Oooh! Donkey meat!" 

Um... ooookaaayyyy. Another package of food that seemed like it would be okay turned out to be "sour cabbage flavor ramen noodles." So we picked up some cereal, veggies, yogurt, sodas, eggs, bread, tea & beer. We'll all probably be a good bit skinnier when we get home.

In Brian's building, we've met several other families from all over the world who are also seeking stem cell treatment. We've met three families, one from the USA, one  from Colombia and one from Iraq. Everyone is very friendly and supportive of one another. One couple asked us out to a restaurant with them the first day, but we were still a bit discombobulated from our journey, so we just took it easy the first day. Two doctors came to evaluate Brian also, and explained that they would be ordering some routine tests for the next day.

This morning, right on the dot of 8 am, the doctor was back with the entire nursing staff. It was quite impressive. Every nurse that would be on duty was briefed on Brian's condition, symptoms and the plan of treatment. They gave us an opportunity to ask questions also. The doctor seems very positive that stem cells will help Brian's muscle tone and movement on his left side. They also are hopeful that his vision will improve, but they said that visual improvement would likely be slower than his motor and muscle results. Ten minutes later (and when they say "ten minutes" they mean ten minutes!) two nurses and one of the liaisons was back to accompany Brian for his tests. Sean also went with Brian. The tests were in another building, the one that looks like a Western hospital. The walls and floor were literally sparkling. It was huge, and very efficient. First stop was phlebotomy, where they drew some blood for lab tests. Then on to the EKG office for that (sinus bradycardia, if you're interested), then to see an ophthamologist. The ophthamologist was an elderly Chinese woman. Though we couldn't understand her Mandarin, she exuded an impressive pride in her work and instilled confidence. After her exam, we were off to get a chest x-ray. The radiology tech was very particular about positioning Brian properly for the x-ray. 

After the tests were done, Brian & Sean took a stroll around the grounds of the complex. There's a huge man-made river or pond, maybe almost a mile long with fountains and gardened islands. The river is filled with beautiful koi; some appear to be nearly two feet long. There are several decorative pavilions among the gardens lining the river, lovely places to relax and enjoy the sound of the fountains. Cicadas are in season here, much as they are in New Orleans, and the constant drone of their buzzing is a comforting reminder of home. Near Brian's building is what we're calling "Church Alley," a small road with a mosque, a synagogue, a Christian church, an Orthodox church and a Buddhist temple. The temple was open when we passed by, and here are some pictures of it, along with a few pics we've taken so far. The sound of Oriental meditational music and the smell of incense was intoxicating. Definitely something to see again.

So far, so good. No tragedies or problems with travel (by the way, Lufthansa is outstanding in the service they gave to Brian!). China is a fascinating place, and huge! You could literally land a plane in the parking lot. Folks that say everything's bigger in Texas have obviously not been to China. There's over a billion people here but everything is so spread out and big that it seems empty. Except the Chinese WalMart, there were loads of people there.

By the way, another China-sized THANK YOU to Brian's latest donors!

Eve N. (Limerick, Ireland) - $15.00

Anne D. (New Jersey, USA) - $250.00

Laura R. (Louisiana, USA) - $50.00

By the way, Blogger, Facebook & Twitter are prohibited in China. This update is being emailed to the website, so I hope it gets posted. Feel free to contact any of us via email! We'd love to hear about the goings-on back home! Stay tuned for more! Here's some pics!

Front page news!

Well, today is the last day in Ireland before Brian leaves for China! He and his family will be very busy packing, picking up last-minute items, and of course driving to the airport tomorrow. We'll be leaving from Dublin airport, about a 2 hour drive from Limerick.
We were all surprised this morning to find Brian had made front-page news in the Limerick Leader! Nevis called to say he was on the front page and Grainne rushed out to the shop and bought four copies. She said she'll be giving one of them to our airplane pilot tomorrow! Fair play to her.
The story's not available on the website just yet, but here's a snapshot of the paper:

Also, a huge "thank you" to Brian's latest donor's:

Haley B. (New Orleans, La) - $15.00
Jeff S. (New Orleans, La) - $100.00
Ann Marie B. & Family (Nottingham, UK) - $1000.00

Stay tuned for more updates. We're not really sure how much we'll be able to access this blog in China due to internet censorship there, but we'll do our best. Thank you for reading, and send Brian your prayers, best wishes and good vibes!

Brian's farewell party in Limerick

Brian has a few days to go before he leaves for China, but he had his farewell party this week. Www.ILoveLimerick.com posted photos on the internet, and you can click here for a link to their Facebook page on which you can see the festivities yourself!

Here's Brian and his family at the party. Stay tuned for more!

From left to right: Jonathan's wife Natalie, Siobhan, Jonathan, Phil, Brian (the man himself!), Brian Senior, Grainne, Nevis & Shane

The Great China Adventure - Part 1!

Well, at long last all of Brian's waiting for stem cells will soon be complete! As of today, 6 July, Brian's sister Grainne arrived safe and sound in Ireland in preparation for her trip to China with Brian! She's very happy to be visiting with Brian and the rest of her family after so long away, living in the USA.

The next part of the adventure begins next week when Sean, Grainne's husband, will arrive in Ireland also!  After only a couple days in the Emerald Isle, Sean will escort Brian along with Grainne and Shane to Dublin, where they leave for their flight to Beijing! Stay tuned for more updates!

Also, many, many thanks to Brian's latest donors! As we said before, your donations are what enable Brian to get his stem cell therapy and continue his ongoing care! A thousand thanks for all who have donated and for all those yet to do so! You are quite literally giving Brian and his family hope!

A huge thank you to Brian's latest donors:
Shelly O. (Cork, Ireland) - $40.00
Joanne H. (London, UK) - $25.00
Mark R. (New Orleans, USA) - $10.00
Elizabeth M. (Dublin, Ireland) - $125.00

If only a blog could convey the deepest gratitude we all feel for every one of you! Thank you!

Keep checking for more updates!

More...

Many thanks to Brian's latest donors!

Barbara G. (Ireland) - $10.00
Tracey S. (N.Y, USA) - $50.00
Natasha B. (Ireland) - $50.00

Every penny that everyone contributes goes to Brian and his care and is received with the utmost gratitude and appreciation!

At the moment, we're basically just waiting for the time to come for Brian to head to China for his stem cell therapy. It will be quite an adventure! We'll be leaving Ireland on Lufthansa airlines for Beijing on July 17 for 3 weeks of treatment. Beike informed us that instead of Shijiazhuang, he will be treated at a brand-new facility in Beijing City! This comes as a pleasant surprise, because he won't have an additional 4 to 6 hour ride to Shijiazuang after a 20 hour plane trip! You can see the website for the new facility here: http://en.yandahospital.com/en/.

The plan is Brian will leave Ireland and travel to China with his brother Shane, his sister Grainne, and Grainne's husband Sean. Sean is a Registered Nurse and will carry some sedatives to help Brian sleep and relax during the long flight. You probably know how irritating a long airplane trip is; you can imagine how unsettling it would be for someone with blindness and a brain injury!

One of our group will stay with Brian in his hospital room while the other two spend the nights in a hotel which is attached to the hospital. Brian will have a busy schedule of tests, physical therapy, and of course stem cell injections. There are plans for a variety of injection methods, including intra-arterial, intravenous, and via lumbar puncture. The doctors in China will be evaluating which methods will be best for Brian.

After a couple of weeks in China, Brian's brother Jonathan and his sister Nevis will come to Beijing and act as "relief" for Shane, Sean and Grainne. Everyone is looking forward to the sights, sounds, and especially trying new food! Sean will be particularly interested in the nursing methods used there. The brochure we read advises Westerners to not be surprised if symptoms like pain or nausea aren't immediately treated with medications. Apparently, medication is used as a last resort. Instead, techniques such as massage, acupuncture, music, therapeutic touch and other non-pharmaceutical interventions are primary methods of controlling discomfort. That should be fascinating to learn! And of course, everyone is eager to see what results the stem cell treatment will have on Brian. Any sort of return of vision or mobility will be a huge blessing!

Brian's treatment is expected to continue until August 7, after which we'll all travel back to Ireland and Brian will no doubt have a new regimen of physical therapy and sessions at Headway Ireland, who have been absolutely stellar in working with him. There's no doubt that Brian will continue to require care, so your contributions via this website or Brian's fund in Ireland will continue to be a vital part of his recovery! Again, many thanks for previous donors and future ones!

Also, if you know anyone in the media who might be able to publicize Brian's case, feel free to forward them this website to get the word out there! Corporate sponsorship of Brian's treatment and recovery is also welcome, and a great opportunity for a positive "P.R. image"! So if you or someone you know might be able to help in that way, by all means, encourage them to do so!

Keep checking here for more updates! We'll be keeping you informed frequently on what's going on while we're in China!

The Final Countdown!

Brian and his brother Jonathan Hogan.

Hello all!

The customary apology for being a slacker goes without saying.  Let's not beat a dead horse, though.  Life just got in the way!

Exciting things happening for Brian.  He's no longer at Beech Lodge.  It served it's purpose, but he's much happier in his new "habitat" (as he calls it).  He's now in Clare Castle. The facility is a type of group home for people who have suffered a brain injury.  It's an amazing place, and Brian is keeping everyone entertained!  It's also close to the airport - in case he decides to run away!

Brian has been doing really well.  He attends "Headway" 2 1/2 days a week (Mon, Tues, and half day on Wed). He's receiving continued education.  He's way too smart (and hyper) to sit in one spot for too long, and as he says "my mind races all day long - might as well give it somewhere to go"!  Sleep isn't on his agenda, unless it's bed time.  "You can sleep when you're dead" he says.  True, true.  Brian has also been busy visiting schools and talking to young people about his experience.  You'd be hard pushed to find a dry eye in the house.  He said "when I hear them snivel and blow their noses - I know I've done my job

Our originally planned stem cell treatment in the US (close to New Orleans) didn't work out, so we're going somewhere else.  We're super excited, and hope you will send good thoughts Brian's way.  We're off to Beijing, China!!

We leave Ireland mid-July, and return around August 7.  Thanks to everyone who contributed to fundraising - Brian will receive several stem cell infusions in that 3 week period.  Thank you all!

A lot of our friends have been asking "what can we do to help".  Well - a million dollars and private jet would be very helpful, but we're shooting for the attainable here.  How about a "letter to Brian".  That way - we can read a letter (or more) a day while we're out of the country.  Just something encouraging, something funny.  Brian loves to have letters read to him.  I'm sure he'll ask for them to be read over and over.  Receiving any kind of treatment is scarey, so if you could encourage him, that would be much appreciated. 

If you can - shoot me an email, or drop me a note for Brian.  I'll be keeping everything until we're at our destination.  We'll also be keeping a blog while we're away, so be sure to check it out as much as possible.  Remember - mid-July to the first week in August will be the treatment dates.  That's a lot of days.  There are over 200 people on this email list.  Surely we can gather more than a letter a day!  We'll have internet access while there, so if you want to email while we're in China - go for it!

Remember - if Brian can do it - YOU CAN DO IT!

Much love,

Hogan Family

P.S.  My address in the US:

326 Olivier Street

New Orleans, LA 70114

USA

I'll be in Ireland from July 5, if you want to send a note to my parents address:

82 Russell Court

Ballykeefe

Limerick

Ireland

A Lighter Shade of Darkness (Brian's feature in the Limerick Leader.)

(Used with permission.) Click to enlarge.

Brian Hogan Jr. Update - August 18, 2011 "Where Does The Time Go"!

Greetings from 104 in the shade!  That's right.  And don't even get me started with the humidity.

I was thinking of what title to use for this update, but I couldn't think of a good one because there really isn't an update.  Sorry :(  The trouble with updates is that there's an expectation of something new and I have nothing new to report. That's not particularly a bad thing, but we really hoped Brian would be called for Stem Cell treatment before now.  It's not unusual to have hold ups with treatments that are not FDA (Federal Drug Administration) approved.  The FDA can put guidelines on treatment, but until these treatments are FDA approved, they call the shots with facilities such as LifeSource in Covington, Louisiana.  Yes, there are other facilities, but after meeting Dr. Lasala, personally, and getting to read statistics on his treatment, this is probably the best place.  Nothing is set in stone, so if the FDA don't pull their fingers out, we'll go elsewhere.  This "holding pattern" might kill all of us! 

I spent 10 very short days with Brian and the family, in July. I hadn't seen him for 12 months. What a great time! From the minute I booked the flight (which was less than two weeks from departure date), I was super anxious about seeing him.  Seeing him means it all really did happen.  Because I'm not around Brian daily (like the rest of the family), I knew it would be very emotional.  As soon as I pulled my suitcase out to pack, the weeping started.  I don't like flying anyway, but I was always super excited to go home.  The past couple of years, it's been bittersweet.  The plan was to get tougher about this sort of thing, not more emotional.  I figured if I cried as much as I could before I got to Ireland, I would be dried up like a prune.  Wrong.
My parents, Nevis and Shane met me at the airport.  Philly cried, of course.  My Dad seems to be shrinking.  Maybe it's because I've always seen him as the tallest man in the world.  Shane and Nevis looked sun kissed, which didn't match the weather outside the airport at all.  I never mind that it's cool in the summer, but it took me 3 days to figure out how to warm up.  I brought all the wrong clothes.  Thank God for whiskey!  My liver is grateful for the break though.
I flew in on Monday, but Brian thought I was coming on Thursday, so we surprised him (see attached pictures).  I can't describe the reunion.  I'll only cry on my keyboard and possibly short the whole computer!

When Brian asked me to describe the sunset, I thought I would curl into a ball and die.  Instead, I described the colors on an outfit I'd seen in his costume collection.  It had yellows, reds and oranges.  He loved that.  When we went to "Quiet Man Country", about an hour and a half drive from Limerick, Brian said "I wish I could see the countryside, I miss it so much".  The car went silent.  Holly barked (she's a dog), which was a welcome interlude.  We spent the car ride playing "the word association game", and Brian loved it.  He said "anything that keeps my brain moving, must be helping to heal me".  He's loving his books on CD.  He says they transport him to another world, one where he can see.

My parents house was a construction site.  Brian will be moving back home shortly.  His time at Beech Lodge was good for him, but he needs to be home.  My parents are in their 60's (which clearly isn't old), but they can't take care of him full-time.  We'll have to have outside professional care, but it'll be nice for the family to know where he is and who's with him at all times.  One side of our house will be for Brian.  It's beautiful.  I wish he could see it for himself.  He wanted exact details of everything from outlets to door knobs.  Brian's profession was Senior Quantity Surveyor at a very big company, so his job was in construction.  Brian was involved in the management side of construction, but he was in and out of building sites on a pretty regular basis.  He misses his work.  He said "all this sitting around doesn't suit me".  It really doesn't.  Brian was always like a bolt of lightening.  It's hard to watch him in a wheelchair.

Watching my parents and siblings with Brian is amazing.  They all do so much.  There's so much love around the kitchen table, that sometimes it's kinda sticky.  Oh, there are arguments too, but mostly everyone just wants to help as much as possible.  Brian took a nap on the Sunday I was home, and I caught my Mother just watching him from the bedroom door.  When she saw me, she said "doesn't he look perfect, like nothing is wrong"?  I can't imagine being a parent and helplessly watch my child suffer.  Parents must have a special trick for keeping it together, because I'd be in a looney bin by now.
Leaving was hard.  I suppose it's a mixture of sadness and guilt.  I get to "escape", but only physically.  Saying goodbye to Brian was actually easy.  He was happy that I was there, but excited about the next visit.  I don't know how he felt on the inside, but he held it together on the outside, and so did I.  It was just me and my parents at the airport.  Phil started crying as soon as I got in line to check in.  Part of me wanted to say "I'll stay for a few more days", but I would have been postponing the inevitable goodbye.  I think this was the first time my Dad cried when I was leaving.  Crying comes easier for him these days.  For that, I'm very sorry.  I thought I'd never board the plane and when I did, I wanted to squeeze my butt through the tiny window and hug my parents one more time.

Between flights and layovers, I was awake for about 30 hours.  I was tired and emotionally drained.  I had a few days to recoup, but they were sad and lonely.  It's never good to be alone when you're that sad :( I communicated with the family by text only for a week or so.  Hearing their voices just made me sad.  It was great to get back to work, but I felt like I was in a fog for a few days.  I have great friends, though.  I'm a lucky girl.

Brian would love to hear from you (even if he doesn't know/remember you).  Here's his contact info:
Brian Hogan Jr.
82 Russell Court
Ballykeefe, Limerick
Ireland
Phone: 0876554411 (that's inside Ireland)  From the US it's 011353876554411.  From the UK, I'm not sure, but if you're Brian's friend, you'll figure it out!  He misses his UK friends a lot.
Everyone's busy and life just gets in the way sometimes, so if you've been meaning to write or call, do it NOW!!  As Brian says "you'd make a blind, brokenhearted little boy very happy".  If that's doesn't get you, you're stone cold! :)
From all of us, to all of you: Thank you for keeping in touch, your prayers, your cards, your messages.  We're grateful every day.
Hogan Family xx
www.iheartbrian.org