Saturday, September 8, 2012

Update on Brian - Reminiscing on China

Greetings!  Well done, Sean, for keeping up with the blog while in Ireland/China.  I thought I'd be more inclined to write, but I just wasn't.  There was plenty to write about, but I couldn't get my thoughts together enough to make sense - if that makes any sense.

Apart from the increased movement to his upper left side, Brian hasn't experienced any significant changes yet. He can now hug you with both arms.  Go ahead and ask him -  he would be delighted to show you.  He said "I haven't been able to do that for three years! Yahoo!”  Any change is an improvement.  The waiting game is painful for all of us, but especially for Brian. We were not expecting Brian to open his eyes and be able to see, or even jump out of his wheelchair and walk towards us, but I think Brian was expecting more changes, more quickly.  We may not see the cell regeneration on the outside.  Brian had such damage to his brain that the stem cells could be regenerating parts of his body on the inside only for right now.  We don't know when there will be significant changes, but most results happen between 6 to 8 months.  I think he went through a little rough patch right after China.  It's to be expected, really.  For 3 whole weeks, Brian had family 24/7.  His every whim and request was granted.  What we realized, thought, is that if there are 5 people in the room with Brian, he wants ALL the attention, and usually wants about 5 different things.  If it's two people with him - he's the same. When Jonathan & Nevis arrived, we tried to take a back seat, but we moved from Yanda International Health City in Beijing to Qingdao, 2 days after Jonathan & Nevis arrived.  The facility at Qingdao has more more advanced physical and occupational therapy, as well as acupuncture and massage therapy, so it was a great move. 

Getting Brian on and off a plane is no easy task.  Airline staff couldn't have been nicer, though.  When they would realize Brian couldn't see (which was usually because one of us would point to Brian's eyes, and motion that he couldn't see) they were extra vigilant with safety.  I have to admit - there's no way I would have been able to manage Brian by myself.  I'm so grateful that I have strong men in my life!  We were always first to board, because it took a little longer, but last to deplane as it also took a little longer.  I never paid attention to people pulling their belongings from the overhead compartments until traveling with Brian.  I was ready to pounce on anyone who swung a backpack or suitcase anywhere close to him.  I must have looked like a crazy person.  If the shoe fits and all that!

I decided there's nothing glamorous about flying anymore.  Even business/first isn't as fancy as it was in the past.  I've only ever flown business/first due to being bumped, but it's just not that special now.  Sure, you get showered with eye masks, ear plugs, and enough champagne to sink a ship, but I was okay in coach (even with 34 kids on the flight from Beijing to Frankfurt).  Shane and I actually had a good time.  Sean and Brian flew business because Brian needs to be partially sedated and then monitored.  Who wants to sit pretty much upright when you have sedatives in your system?  Brian had to be able to recline, and though expensive - he needed a companion. With a brain injury - you can't take any chances that a seizure will occur, and you're halfway to the moon so they're not about to land the plane.  Sean took excellent care of Brian.  We will always be grateful for his company/help/expertise, etc, etc.

Oh, the grocery stores - Lotte Mart, where you could purchase everything from live eel to fruit that is so ugly it should be thrown at hardcore prisoners.  I'm pretty sure the look on my face would have stopped a clock.  I just couldn't get past the "animal parts" - ALL the parts!  You can also purchase a wide variety of candy, but I couldn't find toothpaste. There's NO sparkling water in the grocery store.  NONE.  If you want something with bubbles - buy a beer.  I'm sure that's why I was so dehydrated and developed the bladder infection from hell.  Note to self - next time....bring a soda stream machine!

God bless Starbucks.  I never go to Starbucks, but we found one in Qingdao.  They sometimes had the chicken Cesar wrap, which isn't a guarantee it's chicken, but since they're corporate, I ate several.  They couldn't grasp the concept of "no sugar or syrup" in my passionfruit lemonade, so I just rolled with it.  Ice is a luxury there.  Now, maybe other parts of China are more "tourist" orientated, but we didn't really hit those spots.  Sean and I were looking for Tienanmen Square one afternoon, and a lovely Chinese lady told us we were walking in the right direction, but should grab the #1 bus instead of walking.  She even walked to the bus stop with us.  I'm pretty sure there were 300 passengers on that bus, but they yelled at you to squeeze in, until you were uncomfortably close to the person next to you, so more people could fit.  Chinese people do not shave their arm pits. 

Chinese people stare a lot.  They also spit a lot. That's right - spit.  It's disgusting.  I can barely handle kid snot, but adults spitting.  NASTY. 

I have a lovely, sweet friend who grew up in China.  His reaction to my stories was "oh, no - you experienced all the things I didn't tell you, because I was sure you wouldn't experience them".  Loan me your soda stream if I have to go again, and we'll stay friends!

Medically speaking, Brian got what we went there for.  It's amazing how fear of the unknown causes people to form opinions about medical treatments that they should really keep to themselves.  We heard everything from “What?, China?  Why would you go all the way to China"? to “Well that's just a waste of money.” Really? I'm amazed that people would tell someone in Brian's condition anything other than "go for it Brian - even if there's a slight chance that you could improve - do it".  Stem cells are the wave of the future.  Nothing hurt Brian, and nothing hurt his principles or beliefs. 

We met the most amazing families in China.  We now have "family" in Columbia, Chicago, Iraq, Spain, and Argentina!  We love them all dearly.  Each family made different sacrifices to be in China for stem cell therapy.  Each family had a different story, but one that was as heartbreaking as the next.  The thing about being in China for medical treatment - it didn't matter how much money you had, or didn't have.  You were there because your family member needed something that couldn't be found anywhere else.  Barriers that may have been evident in other arenas in life were broken if not shattered.  Family is what mattered.  It was one of the most fulfilling experiences of our lives.  We laughed and cried together.  That's what it's all about.  Oh, we also drank a little Irish whiskey together! 

In my last update I asked for friends and family to send Brian a letter/card/message of encouragement.  WOW!  We had over 120 letters/cards/emails.  That doesn't include all the people who sent lovely, encouraging Facebook and text messages, and called us on the phone right up to our departure in Dublin.  Thanks so much!  It's because of your  love and support that we can do this (you know who you are).  Never underestimate the power of words.  I heard a friend of my mam tell Brian "you are my hero".  I had to imagine Brian in a cape and tights, or I would have cried. 

The airport goodbyes are getting harder and harder.  I usually make it as quick as I can, but it's our tradition to say goodbye, then wave at one another from the bottom of the glass that separates traveling passengers to those "dropping off.”  Of course life can change in a split second, and every minute spent with people you love is precious.  I'm not sure my heart can take any goodbyes for a while. It also can't take the cards my mother writes and sneaks into the suitcase.  Why does she insist on telling me that she always wonders "will I see my child again?”  Mam loves to give dating/love advice too.  She always wants us to marry someone that will "put us on a pedestal"! How about we just marry someone two feet shorter?!

Between July 4 and August 17, I've been on 12 flights, stayed in 5 hotels (not fancy - believe me), 3 medical facilities, and 3 continents.  I'm tired of living out of a suitcase!  I just finished unpacking this evening.  How do I accumulate so much paperwork, though?  I kept receipts for everything from taxi rides to grocery store visits.

And I arrived back in New Orleans just in time for Hurricane Isaac!  I hadn't unpacked from 6 weeks in China/Ireland, when I was packing the bare essentials and heading 3 blocks away - to stay with friends.  The storm hit New Orleans as a "category 1,” which means "minimal" damage.  In my neighborhood, almost every single house lost all power by 7pm on Tuesday, August 28. I tried sleeping in my hot house (88 degrees and 95% humidity), but I tossed and turned like a fish out of water.  After 6 days of being a hot, sweaty mess, I GOT THE POWER (along with most everyone else)!  Hurricane season doesn't end until the last day of October, so we may experience this all over again!  I'm leaving town next time.

Thanks to everyone who reads this blog, supports us in any/every way.  We're grateful every day, believe me.

Much love and best wishes,

Grainne and all the Hogan Family xx

Brian Using BOTH arms!

Here's our man Brian hugging his sister Nevis for the first time in three years with BOTH arms! Thanks to everyone who made this possible!

Friday, September 7, 2012

Want to see some results of all your generous donations? Here's Brian's first two-handed hug in three years! Thanks to everyone who made this possible! Yes - YOU!

Tuesday, August 14, 2012

After a long journey...

It's been about a week since we landed back in Ireland. Brian is back at ABI Ireland following through with his therapies and his programs at Headway. Shane started his  next semester of school for his nursing placement courses (psychiatric nursing! Lord love him). Sean is back in the United States. Grainne acquired a little infection and fell ill, requiring her to change her flights back the the U.S. to the following week, though after a trip to the doctor she's doing much better. Nevis & Jonathan are both back at work. It was a long journey, and all of us are happy to be back in the "normal" world!

Now we wait. It can take up to eight months before Brian can decide if the stem cell therapy is having an effect. He can't just sit around, though. He must be diligent in following through with his physical and occupational therapy to keep up his strength and work on improving his motor control. All the doctors he's been involved with have said that improvement in his vision will be the slowest to realize, so remember to encourage him in your continued calls, cards, letters, emails and Facebook messages. Every day in China we'd read to Brian the messages everyone sent and it proved to be a wonderfully upbuilding activity for both Brian and all his caretakers! When we'd get stressed or frustrated, your words of encouragement helped both Brian and all the rest of us! Please, please continue to write and call him! 

Brian had great follow-up article written about him in the Limerick Leader! You can read it by clicking this link. As we wait and hope and pray, we also give many thanks to all who have donated to Brian. Without your generosity, Brian would never have been able to enjoy the ray of hope that this treatment has given him. Thank you, thank you, thank you! 

Bookmark this page and remember to check back! We'll keep on updating you with the results of your generosity!

Tuesday, August 7, 2012

Back in Ireland!

After a full day of traveling from Beijing, the view over Ireland is most welcome!

Monday, August 6, 2012

Finally saw a tiny bit of China!

It's our last day in China. Back in Beijing. We checked into an airport hotel. Our flight back to Ireland is at 10:20 in the morning. Grainne took Sean into Beijing while Shane looked after Brian. We saw Tianamen Square, the Forbidden City, and here's Sean at the crazy street market just off "Times Square." More insane food, pushy trinket hawkers, and a vast, tightly packed sea of humanity.
It's been a great adventure and it'll be fun to come back to. We'd do it differently next time, but this has been a fascinating experience. And now we wait, hope & pray for Brian's new sten cells to work their magic!
Stay tuned!

You can never have enough scorpions on a stick.

You know with Chinese food you'll just be hungry again in an hour.

Grainne at Tianamen Square!

Last day in China!

Finally got to see something cool! Sean & Grainne at the Forbidden City, the palace of Chinese emperors till the early 20th century.

Sunday, August 5, 2012

Made it back to Beijing!

Found the first post office we've seen the whole trip! On the last day, naturally.

Last night in Qingdao!

It's been an adventure! Tonight is our last night in Qingdao. Brian got his last stem cells on Friday and he did fine. Results can take six to eight months to appear, so we'll be waitng patiently. We said our goodbyes to our new family in China, Juan, Carolina & Gaby and Farhan, Anita & Zahra. We've been corresponding with the rest of our family, Serar, Jawad & Baidaq and Claudio, Daniela, Brisa and Nacho, who are all back home in Iraq and Argentina. It's a tearful goodbye, but we'll always have our dear friends across the world!

Brian is doing well. He's been working on his arm & leg exercises and doing well. In the morning, they'll be drawing one last set of blood work before we leave. We're off to Beijing in the morning; our flight leaves at 11:05 am. We spend the night there, then wing our way back to the Emerald Isle on Tuesday! We cannot wait!! Give us English, and coffee and soft beds and mom's lasagna and internet everywhere and text messages!

Till tomorrow (or later today by your time - we're 13 hours ahead of New Orleans, 7 hours ahead of Ireland). Wish us well!

Saturday, August 4, 2012

Last weekend in China!

First things first! Many, many, MANY thanks to Brian's latest donors! Sorry if these are a bit late, but receiving PayPal notifications is apparently a bit... unpredictable... here in China.
Jewel C. (Colorado, USA) - $100.00
Roger S. (Derbyshire, U.K.) - $75.00
Edel S. (Armagh, U.K.) - $100.00
Amber F. (Pennsylvania, USA) - $50.00

Brian has completed all his stem cell infusions - 2 lumbar puncture infusions and 4 IV infusions. Now he waits. It can take up to six or eight months to expect to see any results. In the meantime, the staff here in China has given him some good physical therapy exercises to enhance the functionality he has already. Sean has also given him some brain exercises. For example, while holding an object in his weaker and less sensitive left hand, he's asked to identify the object. Then it's placed in his right hand to get a better feel and a more accurate description. Then back into his left hand to compare the two different sensations. He maintains good strength on his left side; coordination and finer motor control is the main hurdle. We've started reminding him to do minor tasks with his left side, such as scratching an itch or washing his hands. As he gets better with minor tasks, he's looking forward to skills requiring greater dexterity, like sculpture and calligraphy (though those probably won't develop this week).

The other families went into Qingdao city tonight (Saturday). Grainne and Sean stayed behind in the hospital with Brian, but insisted that Shane go with the rest of the group (Juan, Carolina & Gaby from Colombia and Farhan, Anita & Zahra from USA). Shane has more than earned a little break for the night. He's staying in a hotel room in Qingdao to rest up a little bit with no heavy lifting, bathing or bathroom duties to wear him out. Shane has acted far above and beyond the call of duty when it's come to helping care for Brian. Thank you, Shane!

While Shane is away, on Sunday Grainne and Sean are hoping to take Brian to the restaurant at the Holiday Inn where we stayed earlier this week for a little treat to the delicious lunch buffet there. All this adventure has been no easier on Brian, and he's earned a little treat as well. Monday we leave the hospital and fly back to Beijing where we'll spend the night in a hotel near the airport, then fly back to Ireland on Tuesday! China has been a great adventure, but every one of us is looking forward to getting back to Western culture (and a bed that doesn't feel like it's made of wood!).

We heard from Serar, Baidaq and Jawad from Iraq. They made it home safely and they're back in Basra. All of them exclaimed how exhausted they were and they sent their love and best wishes to Brian and the rest of us! Mushallah to you too!

We'll be keeping you updated! Thank you!

Thursday, August 2, 2012

Typhoon Damrey

Yawn.

In case you were worried...

Typhoon Damrey isn't much to talk about. We haven't heard any news about flooding or devastation, but then again, we don't understand Chinese so we wouldn't understand anyway. Here in Qingdao, it's been a little rainy and breezy; nothing to write home about (despite the fact we're writing home about it).

Brian's last IV stem cell infusion is today! The nurses were in bright and early to start his IV. The nurse that's been doing his IV's is excellent at it. One quick stick and she's got it. Sean had to try twice for Brian's IV before the plane ride, and the nurses in Beijing had to try four or five times. So kudos to her!

We leave Qindao on Monday for Beijing, where we'll spend the night at a hotel near the airport. Then Tuesday it's back to Ireland! China is strange, sometimes bizarre, but always interesting. We've barely picked up a word of Chinese besides "hello" (ni hao) and "thank you" (xi xia). We've always heard Chinese is the most difficult language to learn, and we do not doubt it. There are no common reference points. Even gesturing means nothing here in China. For example, if you were to show someone three fingers in the West, the other person would generally get the idea of "three." Not here. Even motioning "left" or "right" to the taxi drivers isn't always effective. It's a completely different mindset and view of the world that eludes us westerners for the most part. Being back home will be a most welcome experience.

Stay tuned for more! The adventure continues!

Brian and the typhoon

Not too much to report today. Brian developed a little fever today, but it was easily managed with a cool room, damp towels and a dose of paracetimol (Tylenol). He's in excellent spirits. He has one more IV infusion of stem cells tomorrow. Brian's left arm & leg are much easier to move these day. Not sure if that's from the stem cells or physical & occupational therapy, but hey, we'll take what we can get. No changes yet in his vision, but all the doctors have said that if he gets any results, they would be slower to develop.

We've checked out of the hotel in Qingdao. It's was on the expensive side and it's more important to spend the available money on Brian's expenses while we're here in China. So we'll all be staying in Brian's hospital room. Fortunately he's in the larger "VIP" room, so there's enough room for all of us.

The staff here told us that there's a typhoon heading our way. Typhoon Damrey. Sean and Grainne thought they might be getting break from New Orleans' hurricane season. We didn't really plan on landing smack dab in the middle of China's typhoon season, but here we are. People seem far less frenetic about their hurricane preparations here; everyone seems to be just going about their business as usual. Damrey will apparently be passing just barely south of our position.

We'll let you know how it goes! Stay tuned!


Menu offerings

Sean made stir-fried veggies, rice & French bread. (Well, he didn't actually make the bread this time.)

Sean made dinner again tonight

Chicken & beef in sweet chile & ginger sauce. Grainne made delicious tomato, cucumber & red onion salad

Wednesday, August 1, 2012

2nd Lumbar Puncture/IV day!

Brian had his second lumbar puncture infusion of stem cells and his third IV infusion today! All went well! As before, he had to lie horizontal for six hours after the lumbar puncture. He did quite well; no pain, headaches or nausea. No fever either, though we've discovered that all the patients experience a fever after their first lumbar stem cell infusion, just as Brian had. The second time had no problems. He's sitting up now, having some supper that Sean cooked.

Jonathan and Nevis left earlier today also. Nevis is heading back to Ireland and Jonny is heading to Germany for a few days' visit with his wife's family. We're so grateful for the help they gave and all the effort to travel so far to give the rest of us a little break, even though they never really got to see any of China. They had about a thirteen hour layover in Beijing, so hopefully they took the chance to take a taxi into town for a day of sightseeing.

The new facility we are at in Qingdao has been a real boost to everyone's spirits. Qingdao is a beautiful city - there are several parks visible right out of Brian's hospital windows and the streets we've traveled down are all lined with lovely gardens. Plus they brew Tsingtao beer here; Shane is hoping to take a tour of it this weekend!

Last night we had a little going away party for Jonathan and Nevis. We had supper at the restaurant at the Holiday Inn at which we're staying, then a cocktail or two in the hotel bar with Juan, Carolina and Gaby. There was a quartet of beautiful Filipina girls singing in the band and they dedicated "Rolling in the Deep" by Adele to Brian! A great time was had by all!

On a culinary note, Sean has appointed himself the chef of the group. It's been a challenge catering to the various tastes of everyone, but so far there's been no problem. Today for example, we had some grilled pork, stir-fried veggies with a butter & oyster sauce over rice and curry chips (curry sauce courtesy of Nevis & Jonny's treats from Ireland!). It went over well. We only wish we knew what more of the items at the supermarket were; no doubt they'd be delicious!

Stay tuned, more soon!

View from Brian's hospital balcony(!) at night