We're close to the end of 2010 (thank God), and this update is once again over due. There doesn't seem to be enough hours in the day! So, the exciting news is...... Brian will be coming State Side (USA) for his Stem Cell Treatment. In ALL the research we did (and there was tons), we always leaned towards Stem Cell Facilities that advertise; China, Germany, South America. We always did a search for "stem cell treatment for ONA (optic nerve atrophy), and we were guided in the directions of the countries above. One day, a friend of mine (who's a nurse) said "G, I work with a girl, who's possibly having Stem Cell Treatment in Covington". Covington is a pretty small town, about 35 minutes drive from New Orleans, Louisiana (where I live). I had heard that TCA or Lifesource existed, but I thought it was just research. WRONG! If you go to www.tcaway.com, you'll find out that they are a research facility, but they're also a treatment facility.
I called immediately, and spoke to Erica. Erica was so incredibly in tune to what our needs, hopes and aspirations were for Brian (and the rest of us, of course), that I silently cried throughout the conversation. The facility in Covington is the ONLY facility in the world with the technology to take either your own, or donor stem cells, incubate them, and multiply them to upwards of 50 - 100 million stem cells. China was guaranteeing upwards of 5 million cells (which seems like a lot), but when you compare it to between 50, and 100 million, there's absolutely no way we're taking "the kid" to China. As you can imagine, we've all kept it on the down low, because when Brian gets something in his head, he's relentless. Sean and I made an appointment to visit Lifesource, and I'm pretty sure neither of us slept Monday, Tuesday, and Wednesday night. Our 45 minute journey across Lake Pontchartrain (the longest bridge over water in the world, at 24 miles) seemed never ending. We've driven that bridge hundreds of times, but this time was different. We barely spoke to each other (a miracle in itself, if you know me). I think I was holding my breath for 24 miles. You know those "special days" when you remember every single detail? I remember what I was wearing, what purse I was carrying. I remember how my heels hurt, but I didn't care. I remember thinking "here we are, and what if Dr. Lasala doesn't like us". "What if he says "all the way from Ireland, that's a long way to travel for a maybe". I had practiced all the "conversation stoppers". I practiced crying (because that's so hard these past months!!!). I thought, "I'll start crying, and there's no way he'll say "no" to us". Sean thought I was crazy (or, crazier).
I'd never met Erica before, but when I did, I hugged her like she was my best friend. She invited us into a room with an examination table, a sink, and a couple of random chairs. We chatted a little about the weather, and then she said "Dr. Lasala is running about 10 minutes behind, so sit tight". Sit tight? I would have sat on a bed of nails, ALL day, just for the opportunity to plead our case. When Dr. Lasala entered the room, he smiled. Sean and I both stood up, and introduced ourselves. He was shorter than I anticipated. I suppose because I'd heard so many good things about him, and our research had always, always been so impressive, that I expected him to be 8 feet tall. His smile was genuine, and when he sat down, I immediately felt like I was going to cry. Not because things didn't look so positive, but because I knew he was settling in for a conversation. In the 20 minute meeting, he never once said "your brother", or "the patient". He always said "Brian". You have no idea how important that was to us. When people (some of them, friends) say "how's your brother", I just want to scream "his name is Brian" (like everyone in the world should know about this incredible boy). Silly, I know. Dr. Lasala was fascinating. He could tell we had researched Stem Cells. He knew we knew the job of Stem Cells, and what their potential was. I could tell he appreciated how much we studied their value to our bodies.
We told Dr. Lasala that we were willing to give anything a try, not once, but multiple times, because we knew that there were no guarantees. He smiled when we said "you'll love Brian, he's amazing", and he said "of course". He always said things like "this is what we'll do", "this is how we'll infuse Brian", "Brian won't be in any pain", etc., etc. So, from the beginning, we knew Dr. Lasala wanted to help. He had a difficult time connecting Brian's loss of eyesight with Brian's injury, so he spoke to us about consulting with a Neurological Ophthalmologist, who's had success with treating children with Optic Nerve Atrophy, using Stem Cells. Who knows what she might be able to do for Brian. He looked at Brian's initial report (from the morning he was admitted to A&E, in Queens Medical, Nottingham). He said "it's a miracle Brian is with us". His injury was so severe, that it was almost unbelievable he didn't die. We talked to Dr. Lasala about how fit Brian was. He said "Brian is determined, no?". "YES", we said. Anyone who knows Brian knows that to be true!
When Dr. Lasala opened the door to leave, I wanted to hug him, but I was afraid he'd think I was a freak, so I held back. Erica had a big smile on her face, because secretly she knew Dr. Lasala was interested in helping Brian. She couldn't tell me that prior to the meeting, but she had a good feeling. I hugged her instead!
Nevis knew we were meeting with Dr. Lasala, because I needed her to get all Brian's medical documents, and medication lists. Jonathan knew just the day before, because he sent me a desperate email about how we had to hurry up and take Brian to China, because he was just so heartbroken, and felt helpless. I had to let him in on the "secret", just to calm him down. Shane knew because he was going on a much needed holiday to India, and he called me a couple of days before take off, to say he was feeling so guilty for leaving Brian, that he was considering canceling his holiday. I had to tell him something good.
Sean and I left Lifesource after about 2 hours. The sun was shining, and there was a little breeze, and I thought "if anyone can help Brian, it's Dr. Lasala, and this team". I felt warm and fuzzy all over!
Then, started the phone calls, the tears, the story, the joy, the anticipation! Telling my father was one of the greatest joys I've ever experienced. Hearing Nevis tell my mother in the background, was another great joy. It's all still a "maybe", but it's so much more positive than China. Don't get me wrong, the facility in China has helped thousands of people, but it's not the right place for Brian right now. We've found facilities in South America, Germany, Russia. But Lifesource is the ONLY facility with the technology to grow the cells to such an incredibly large quantity. The more, the merrier!
So, Brian will be coming to New Orleans again. He loves New Orleans. He spent a summer with me in 1997, and then came here again in 2005, when I took him to see his idol, Aretha Franklin (another great joy for me). What a fabulous night at the Super Dome. Little did we know, Hurricane Katrina would rip New Orleans apart just 2 months later, and I would lose everything materially. Brian mourned for the loss of my little house, and my "things". He cried at the idea that my beloved City was in tatters, but he sent me a CD of Annie Lennox "I've Got A Life", and wrote the loveliest note about coming out of the ashes, and moving forward. I see that note every day, and now it reminds me of Brian.
Brian is on the schedule for an infusion, but it may take until the end of January, or some time in February. I'm busy getting my house ready for the onset! It's been a wild ride!
For now, Brian is busy getting himself healthy. He's using the exercise bike at least once a day. He said "when you work out, the blood flows through your body much faster, and that will really help me with the Stem Cells". He's so smart it's ridiculous!
So, that's the big "secret". No longer a secret now, of course!
While it won't be as expensive for Brian to come to the US (because I live here), the treatment, and travel will be just as costly. To all of you who have donated (time, money, etc., etc.), THANK YOU! Brian is worth every single penny. We're always overwhelmed by your generosity! We may not tell you how much we appreciate you're time, effort, resources, but we think about it in our sleepless nights, in our drives to work, in our quiet times, when nobody sees us pray to keep going. So, "THANK YOU" all.
If you think of a good fund-raising event, let me know, and I'll put it on Brian's website - www.iheartbrian.org. Every single penny is accounted for (thank you, Ciara). Nevis is the contact person in Limerick, but you can email, call, or Facebook me too. The latest fund-raising information (and success stories) are on Brian's website, so don't miss those. If you want to drop Brian a note, you can mail it to: 82 Russell Court, Ballykeefe. Limerick. Ireland. He would love to get "fan mail".
Brian can't see, but in his "minds eye", he see's everything. Last week he said; "when I can see again, I'm never turning the lights on". Really? You're killing us, kid!
My family is grateful every day for even the opportunity to thank you ALL.
Much Love,
Hogan Family xxxx
I called immediately, and spoke to Erica. Erica was so incredibly in tune to what our needs, hopes and aspirations were for Brian (and the rest of us, of course), that I silently cried throughout the conversation. The facility in Covington is the ONLY facility in the world with the technology to take either your own, or donor stem cells, incubate them, and multiply them to upwards of 50 - 100 million stem cells. China was guaranteeing upwards of 5 million cells (which seems like a lot), but when you compare it to between 50, and 100 million, there's absolutely no way we're taking "the kid" to China. As you can imagine, we've all kept it on the down low, because when Brian gets something in his head, he's relentless. Sean and I made an appointment to visit Lifesource, and I'm pretty sure neither of us slept Monday, Tuesday, and Wednesday night. Our 45 minute journey across Lake Pontchartrain (the longest bridge over water in the world, at 24 miles) seemed never ending. We've driven that bridge hundreds of times, but this time was different. We barely spoke to each other (a miracle in itself, if you know me). I think I was holding my breath for 24 miles. You know those "special days" when you remember every single detail? I remember what I was wearing, what purse I was carrying. I remember how my heels hurt, but I didn't care. I remember thinking "here we are, and what if Dr. Lasala doesn't like us". "What if he says "all the way from Ireland, that's a long way to travel for a maybe". I had practiced all the "conversation stoppers". I practiced crying (because that's so hard these past months!!!). I thought, "I'll start crying, and there's no way he'll say "no" to us". Sean thought I was crazy (or, crazier).
I'd never met Erica before, but when I did, I hugged her like she was my best friend. She invited us into a room with an examination table, a sink, and a couple of random chairs. We chatted a little about the weather, and then she said "Dr. Lasala is running about 10 minutes behind, so sit tight". Sit tight? I would have sat on a bed of nails, ALL day, just for the opportunity to plead our case. When Dr. Lasala entered the room, he smiled. Sean and I both stood up, and introduced ourselves. He was shorter than I anticipated. I suppose because I'd heard so many good things about him, and our research had always, always been so impressive, that I expected him to be 8 feet tall. His smile was genuine, and when he sat down, I immediately felt like I was going to cry. Not because things didn't look so positive, but because I knew he was settling in for a conversation. In the 20 minute meeting, he never once said "your brother", or "the patient". He always said "Brian". You have no idea how important that was to us. When people (some of them, friends) say "how's your brother", I just want to scream "his name is Brian" (like everyone in the world should know about this incredible boy). Silly, I know. Dr. Lasala was fascinating. He could tell we had researched Stem Cells. He knew we knew the job of Stem Cells, and what their potential was. I could tell he appreciated how much we studied their value to our bodies.
We told Dr. Lasala that we were willing to give anything a try, not once, but multiple times, because we knew that there were no guarantees. He smiled when we said "you'll love Brian, he's amazing", and he said "of course". He always said things like "this is what we'll do", "this is how we'll infuse Brian", "Brian won't be in any pain", etc., etc. So, from the beginning, we knew Dr. Lasala wanted to help. He had a difficult time connecting Brian's loss of eyesight with Brian's injury, so he spoke to us about consulting with a Neurological Ophthalmologist, who's had success with treating children with Optic Nerve Atrophy, using Stem Cells. Who knows what she might be able to do for Brian. He looked at Brian's initial report (from the morning he was admitted to A&E, in Queens Medical, Nottingham). He said "it's a miracle Brian is with us". His injury was so severe, that it was almost unbelievable he didn't die. We talked to Dr. Lasala about how fit Brian was. He said "Brian is determined, no?". "YES", we said. Anyone who knows Brian knows that to be true!
When Dr. Lasala opened the door to leave, I wanted to hug him, but I was afraid he'd think I was a freak, so I held back. Erica had a big smile on her face, because secretly she knew Dr. Lasala was interested in helping Brian. She couldn't tell me that prior to the meeting, but she had a good feeling. I hugged her instead!
Nevis knew we were meeting with Dr. Lasala, because I needed her to get all Brian's medical documents, and medication lists. Jonathan knew just the day before, because he sent me a desperate email about how we had to hurry up and take Brian to China, because he was just so heartbroken, and felt helpless. I had to let him in on the "secret", just to calm him down. Shane knew because he was going on a much needed holiday to India, and he called me a couple of days before take off, to say he was feeling so guilty for leaving Brian, that he was considering canceling his holiday. I had to tell him something good.
Sean and I left Lifesource after about 2 hours. The sun was shining, and there was a little breeze, and I thought "if anyone can help Brian, it's Dr. Lasala, and this team". I felt warm and fuzzy all over!
Then, started the phone calls, the tears, the story, the joy, the anticipation! Telling my father was one of the greatest joys I've ever experienced. Hearing Nevis tell my mother in the background, was another great joy. It's all still a "maybe", but it's so much more positive than China. Don't get me wrong, the facility in China has helped thousands of people, but it's not the right place for Brian right now. We've found facilities in South America, Germany, Russia. But Lifesource is the ONLY facility with the technology to grow the cells to such an incredibly large quantity. The more, the merrier!
So, Brian will be coming to New Orleans again. He loves New Orleans. He spent a summer with me in 1997, and then came here again in 2005, when I took him to see his idol, Aretha Franklin (another great joy for me). What a fabulous night at the Super Dome. Little did we know, Hurricane Katrina would rip New Orleans apart just 2 months later, and I would lose everything materially. Brian mourned for the loss of my little house, and my "things". He cried at the idea that my beloved City was in tatters, but he sent me a CD of Annie Lennox "I've Got A Life", and wrote the loveliest note about coming out of the ashes, and moving forward. I see that note every day, and now it reminds me of Brian.
Brian is on the schedule for an infusion, but it may take until the end of January, or some time in February. I'm busy getting my house ready for the onset! It's been a wild ride!
For now, Brian is busy getting himself healthy. He's using the exercise bike at least once a day. He said "when you work out, the blood flows through your body much faster, and that will really help me with the Stem Cells". He's so smart it's ridiculous!
So, that's the big "secret". No longer a secret now, of course!
While it won't be as expensive for Brian to come to the US (because I live here), the treatment, and travel will be just as costly. To all of you who have donated (time, money, etc., etc.), THANK YOU! Brian is worth every single penny. We're always overwhelmed by your generosity! We may not tell you how much we appreciate you're time, effort, resources, but we think about it in our sleepless nights, in our drives to work, in our quiet times, when nobody sees us pray to keep going. So, "THANK YOU" all.
If you think of a good fund-raising event, let me know, and I'll put it on Brian's website - www.iheartbrian.org. Every single penny is accounted for (thank you, Ciara). Nevis is the contact person in Limerick, but you can email, call, or Facebook me too. The latest fund-raising information (and success stories) are on Brian's website, so don't miss those. If you want to drop Brian a note, you can mail it to: 82 Russell Court, Ballykeefe. Limerick. Ireland. He would love to get "fan mail".
Brian can't see, but in his "minds eye", he see's everything. Last week he said; "when I can see again, I'm never turning the lights on". Really? You're killing us, kid!
My family is grateful every day for even the opportunity to thank you ALL.
Much Love,
Hogan Family xxxx
And many thanks to Brians latest donors!
Robert C., Bondi, NSW, Australia - $30.00
Amy F., Burton-on-Trent, Staffordshire, UK - $20.00
Mark O., Hove, UK - $20.00
G. & E. Talbot (Mrs. Talbot's Tasty Foods) Metairie, La., USA - $75.00
Just want to say , prayers and thought will be with the whole family.
ReplyDeleteIf at any time the commute to treatments conflict with any of the daily life issues we all deal with. I would be honored to help out and give Brian a ride if it is ever needed.