There are celebrations during fall in different cultures, faiths and families throughout the world. To only name a few, India celebrates its Festival of Lights (Diwali), the Muslim faith celebrates Eid-Al-Adha, the Jewish faith celebrates Sukkot, Cambodia commemorates the end of the rainy season with its 3 days Water Festival (Bon Om Touk), the Mid-Autumn Festival is celebrated in China and in Vietnam.
In North America, we celebrate Thanksgiving. This weekend is Thanksgiving weekend in Canada. In the United States, Thanksgiving is celebrated at the end of November.
Growing up in an all-French environment in the 1970s, we never talked about Thanksgiving. Thanksgiving was the mid-autumn long weekend when we would collect the leaves fallen from the trees. I have dear memories of my late father making huge piles of leaves so I could jump in them when I was a little girl.
When I moved to English Canada for university in my late teens, I discovered there was a lot more happening than just picking up leaves. The hallways in the elementary school where I was a French language monitor were covered with turkey and harvest themed crafts made by the children, the markets selling autumn flower arrangements in downtown Ottawa, the squash on display coming in all different colours, and of course, the turkey and its fixings being advertised on sale everywhere. I love fall, I have always loved fall, maybe because I am an October baby! But I love fall even more since I started to make a point of including Thanksgiving as an official celebration in my life. It started in a very modest way when I was living on my own, but it took a bigger turn over the years. And I married an anglophone, which made it easier! Michael loves cooking on Thanksgiving. He is up early to prepare the turkey and its fixings and I usually take care of the baking. We love having people over and entertaining. I love seeing the crafts the little ones make at school.
Thanksgiving is widely celebrated in English Canada. It is an occasion to celebrate and give thanks for the blessings of the harvest. But for our family, it took another meaning, a very special one. On Thanksgiving weekend in 2008, we received the proposal to adopt our beautiful Logan Hoang. We got an email with his picture and it was love at first sight. This wee little guy was then 2 months old, in an orphanage in Vietnam. From then on until adoption day 2 months later, we lived on 2 time zones, constantly thinking about him and his well-being. We get very emotional each year as Thanksgiving approaches and as Logan Hoang is growing, he senses the importance of the whole deal.
In 2015, Thanksgiving is gaining even more meaning for our family. Let's not sugar-coat it, we have been through quite the year. But in hind sight, it has been a wonderful successful one. We are grateful for everyone who has been supporting us, for all the media who have helped us convey our message. I am not a believer for say, but I like to thank Life for my beautiful daughters' health, and also for preserving my other seven children's sanity through it all.
I am grateful for the medical teams who have been involved with the twins, Michael and our anonymous donor. I am grateful for my Canada who took my twins under its wings while they were so sick.
Thank you Michael for being the father you are and for giving Phuoc a second chance at life. Thank you anonymous Donor for your unselfishness and for giving Binh another chance as well.
From our house to yours, Happy Thanksgiving to all!
Sunday, October 11, 2015
Friday, April 3, 2015
We Are Not Wonderful Or Awesome
We do not pretend that our actions make us wonderful or awesome people. Yes, I will admit, we like to look at ourselves in the mirror and be proud of who we are. And that's what we tell our kids: make sure your actions make you proud of yourself. That you can look at yourself in the mirror at the end of the day and be satisfied with what you have done or what you have said. Michael and I are proud of who life has shaped us to become. We feel fulfilled with what we have, with who is surrounding us. We feel like we have nothing to envy. This did not all happen overnight. It takes a long time sometimes to build enough self confidence to learn to swim upstream comfortably. But we just followed the course of events that unfolded in front of us. Everyone comes to life with a mission and I guess we are living up to what ours was through our family, our children.
The really wonderful and awesome people are the ones around us, near or far, who have been helping us through this all so far. Hopefully, I have everyone here...!
- my mom and dad, and Michael's mom and dad for supporting us without judging us;
- our friend who has been helping our boys with their homework during my absence;
- our precious friends and our caregiver who have travelled to Toronto to bring support;
- our friends who have been supporting Michael and have been advocating for him in hospital;
- the MFRC in Toronto for helping us find an incredible ''human resource'' and the KMFRC in Kingston for their support with the girls;
- our Military family who organized a Meal Train when I returned to Kingston and felt so overwhelmed;
- the local restaurants and businesses who took part in the Meal Train;
- our amazing friends from far away in UAE who have been supporting us since the very beginning of this amazing adoption story of the twins: we miss you guys so much!
- our Vietnamese family in Canada: we are so blessed to have your support and we are proud to make the Vietnamese culture a part of our family;
- the parents of the dance, robotics and cadets communities who have helped with transportation;
- the mother who made sure my boys could attend her little boy's birthday by providing transportation;
- the little child who asked his guests for donations for the twins in lieu of birthday gifts: thank you from Binh and Phuoc!
- the individuals from all over the world who have been sending presents to the twins and their siblings;
- the young man who offered Binh and Phuoc a tote bag from his company: thank you Andrew!
#BeTheReasonSomeoneSmilesDay
grouphugapparel.com
- Michael's co-workers and the personel who works at the Base Hospital;
- My friend Véronique who took over the admin of our Facebook page when it became overwhelming! https://www.facebook.com/pages/Liver-Transplants-for-our-Vietnamese-Twin-Girls/1401239010168456
- all the so very generous people who have been contributing to our GoFundMe: wow!!!
- the random people who saw me in the hospital, recognized me and just came over to give me a hug;
- the medical teams at Sick Kids and Toronto General Hospital
- our home care nurses who show up everyday at home for IV therapy;
- the very patient people who work in the Live Liver Donor Assessment office at TGH: do we owe you paper for the fax machine?
- all the 100s (over 600) people who have volunteered to donate part of their liver for our girls: that took a lot of courage!
- and hopefully the many of those hundreds who will make the decision to leave their name on the list to be anonymous donors for the other equally worthy people waiting for an organ;
- my children's schools: thank you for keeping an eye on my precious children by making sure they remain happy through this all;
- all the different groups and organizations who have come together to send donations, thoughts and prayers our way;
- and all the members of the media and press, from all over the world, for helping us by making our twins' story known and therefore helping in raising awareness for organ donation and Alagille syndrome.
Without all of you, this would not be possible. YOU are the AMAZING and AWESOME ONES!
The really wonderful and awesome people are the ones around us, near or far, who have been helping us through this all so far. Hopefully, I have everyone here...!
- my mom and dad, and Michael's mom and dad for supporting us without judging us;
- our friend who has been helping our boys with their homework during my absence;
- our precious friends and our caregiver who have travelled to Toronto to bring support;
- our friends who have been supporting Michael and have been advocating for him in hospital;
- the MFRC in Toronto for helping us find an incredible ''human resource'' and the KMFRC in Kingston for their support with the girls;
- our Military family who organized a Meal Train when I returned to Kingston and felt so overwhelmed;
- the local restaurants and businesses who took part in the Meal Train;
- our amazing friends from far away in UAE who have been supporting us since the very beginning of this amazing adoption story of the twins: we miss you guys so much!
- our Vietnamese family in Canada: we are so blessed to have your support and we are proud to make the Vietnamese culture a part of our family;
- the parents of the dance, robotics and cadets communities who have helped with transportation;
- the mother who made sure my boys could attend her little boy's birthday by providing transportation;
- the little child who asked his guests for donations for the twins in lieu of birthday gifts: thank you from Binh and Phuoc!
- the individuals from all over the world who have been sending presents to the twins and their siblings;
- the young man who offered Binh and Phuoc a tote bag from his company: thank you Andrew!
#BeTheReasonSomeoneSmilesDay
grouphugapparel.com
- Michael's co-workers and the personel who works at the Base Hospital;
- My friend Véronique who took over the admin of our Facebook page when it became overwhelming! https://www.facebook.com/pages/Liver-Transplants-for-our-Vietnamese-Twin-Girls/1401239010168456
- all the so very generous people who have been contributing to our GoFundMe: wow!!!
- the random people who saw me in the hospital, recognized me and just came over to give me a hug;
- the medical teams at Sick Kids and Toronto General Hospital
- our home care nurses who show up everyday at home for IV therapy;
- the very patient people who work in the Live Liver Donor Assessment office at TGH: do we owe you paper for the fax machine?
- all the 100s (over 600) people who have volunteered to donate part of their liver for our girls: that took a lot of courage!
- and hopefully the many of those hundreds who will make the decision to leave their name on the list to be anonymous donors for the other equally worthy people waiting for an organ;
- my children's schools: thank you for keeping an eye on my precious children by making sure they remain happy through this all;
- all the different groups and organizations who have come together to send donations, thoughts and prayers our way;
- and all the members of the media and press, from all over the world, for helping us by making our twins' story known and therefore helping in raising awareness for organ donation and Alagille syndrome.
Without all of you, this would not be possible. YOU are the AMAZING and AWESOME ONES!
February 10, 2015: A Date To Remember
Like us on Facebook https://www.facebook.com/pages/Liver-Transplants-for-our-Vietnamese-Twin-Girls/1401239010168456
February 10, 2015, marks a victory for our family. We promised the twins, on the day we first saw them in Vietnam back in November 2012, that we would do everything we could for them. I was determined to fight to the very end for them. And I did. We fulfilled our promise.
On that very special day, my husband Michael donated a portion of his liver to our daughter Thi Phuoc.
I woke up on that morning with a gentle kiss from my husband. I had slept in the room at Sick Kids with Phuoc and he had spent the night in a hotel nearby. Well, in reality, neither of us slept. Michael was anxious and so was I. But Phuoc slept well. Michael brought me a coffee. It was 5h00 am. We sat for a bit, then went for a short walk in the hallway. There was not much to be said. We both were secretly hoping for the very best outcome. But we both were also aware of the risks involved for him and Phuoc. 5h30 came fast and it was time for him to go so he could report at Toronto General for 6h00. This Army guy never wants to show up late! It felt weird for me to see him leave for something as big as this was, and not be able to go with him. I have seen him go off on missions with the Military many many times, but none of these goodbyes were nearly as hard as this one as he was embarking on a special mission. I felt thorn between my duty as a wife/best friend and my motherly duty. And it remained like this the whole time Michael was in the hospital.
Daddy saying goodbye to Phuoc on the eve of the transplant.
My older daughters arrived bright and early, dropped their suitcase in Phuoc's room and raced to Toronto General to get the chance to kiss their dad good luck before the surgery. They made it and came back to spend some time with Phuoc before her time came. A very close friend of mine also came to spend a few days with me including the transplant day, and then another very good friend arrived to help out with Binh and the whole situation. I was lucky to be well supported because Michael and I had totally underestimated the challenge ahead of us. Having two loved ones in surgery and then in recovery in two different hospitals is tough. And having a toddler around, waiting for her turn to go is hard as well.
We spent some really nice time with Phuoc, who was in a really good mood. She was giggling, being her true self. Once we got the ok from TGH that Michael's liver was good to go, Phuoc got called in.
Mommy saying ''see you later'' to Phuoc, just before she entered in the OR for an 8 hour long surgery.
We walked Phuoc over to the holding area. It got very emotional and Phuoc started to sense something was not quite right. I held her close while talking to the nurses and the anesthesiologist. I did not want to let go of my little baby girl. I carried her to the door of the OR and handed her over. This was the hardest thing I ever had to do. But I knew by doing so that I was fulfilling my promise. There was nothing else more I could have done for her. And when the doors closed, I felt a huge sense of relief.
The day went on very smoothly, almost in a surreal manner. I spent quite a bit of time on Facebook reading all the nice messages from people, did some laundry and organized a few things where we were staying. We went to have a bite to eat and I even saw my big face on tv while eating! And before we knew it, I received a text telling me that Michael's piece of liver had been carried over to Sick Kids and that he should be out within a few hours. And so he was. His surgery was done in 7 hours and I was able to go visit him around 4h00 in the ICU. I remember thinking how surprisingly good he looked.
Drugs were an amazing thing for him: he barely remembers the first few days...! It helped control the pain and discomfort, both mainly associated with gas trapped in the abdomen. We asked another close friend of ours to spend a few days with him to keep him company and be his advocate. This way, I was able to give more of my time to Phuoc and Binh. This was a good plan. He stayed in ICU for about 36 hours and was then moved to a room. He sat the day after the surgery and walked to meet me in the hallway on day 3. Michael stayed in hospital for 9 days. But on release day, he was doing pretty well. It sure helps when you go in in excellent shape.
Dad in ICU. I went to visit him while Phuoc was still in the OR.
I must have made my way back to Sick Kids around 5h30 pm. I think we met with the surgeon around 7h30 pm, but I could be wrong, things are a bit blurry. I remember hearing these words coming out of his mouth: ''very smoothly and as planned. G-tube remains.Very optimistic.''
And this is all I needed to hear. Both my loved ones had pulled through. And that's all that counted then.
I went to visit my Phuoc in CCU and I have to say I was very well prepared: I had seen many pictures of liver transplant kids coming out of surgery. My girls are fighters. They have been through many storms in their short lives. I knew Phuoc would be ok and I know Binh will be ok when her turn comes.
The nurse told me to go and have some rest. My friend and I went for a celebratory glass of wine, and barely talked to each other as we were reading the nice comments from people from all over the world! I barely remember my head touching the pillow: it had been an emotionally exhausting day, but we are privileged to have been given a chance with Phuoc. We are now anxiously waiting for Binh's turn to come, when it is due to come.
Phuoc coming out of surgery. This was in CCU.
Still in CCU. Day 1, breathing tube already out.
Day 3. Sitting for the first time.
Day 5. First visit from daddy. He walked halfway between the 2 hospitals. Impressive.
Back home after 4 weeks. Healing well.
6 weeks post transplant. Binh (left) is still waiting for her life saving surgery. Phuoc (right) is obviously doing very well.
Sunday, February 1, 2015
Positive Turn Out! Kudos to You All!
Here are the latest news from Toronto:
http://www.cbc.ca/player/News/Canada/Toronto/ID/2651133618/
Over 350 people reached out and enquired with the live liver donation assessment office at the Toronto General Hospital! And 280 people so far had faxed their application as of Friday!
This is incredible! And for so many reasons: people are reaching out to my little girls. Also, Alagille syndrome is getting media attention and getting more known. But ABOVE ALL, hopefully those courageous people who have submitted their applications will elect to leave their name there in order to help save others who are on the list waiting for a liver, and are just as important as my daughters.
I hope this media campaign is giving hope to the many who are suffering in silence.
We are spending a wonderful weekend as a family. Nothing fancy, everything low key: long term school projects have been completed, overdue paperwork is getting done, and I managed to fit in a nice run this morning. Brrr. -25 degrees Celsius. But I got her done ;)
Daddy took the boys out for some fun in the snow and I am chilling at home with my girls, smaller ones and older ones.
Who is a Super Bowl fan here? We are no sports fans, but we like to spend time with some of those who are. They like to eat chicken wings on Super Bowl Sunday and we happen to like chicken
wings ;p
Have a good one!
http://www.cbc.ca/player/News/Canada/Toronto/ID/2651133618/
Over 350 people reached out and enquired with the live liver donation assessment office at the Toronto General Hospital! And 280 people so far had faxed their application as of Friday!
This is incredible! And for so many reasons: people are reaching out to my little girls. Also, Alagille syndrome is getting media attention and getting more known. But ABOVE ALL, hopefully those courageous people who have submitted their applications will elect to leave their name there in order to help save others who are on the list waiting for a liver, and are just as important as my daughters.
I hope this media campaign is giving hope to the many who are suffering in silence.
We are spending a wonderful weekend as a family. Nothing fancy, everything low key: long term school projects have been completed, overdue paperwork is getting done, and I managed to fit in a nice run this morning. Brrr. -25 degrees Celsius. But I got her done ;)
Daddy took the boys out for some fun in the snow and I am chilling at home with my girls, smaller ones and older ones.
Who is a Super Bowl fan here? We are no sports fans, but we like to spend time with some of those who are. They like to eat chicken wings on Super Bowl Sunday and we happen to like chicken
wings ;p
Have a good one!
Wednesday, January 28, 2015
Keeping Busy, While Waiting
Somedays, it feels like we are watching the kettle, waiting for the water to boil.
It also reminds me of how I felt at the end of each pregnancy: you know it will happen, you try to be ready at all times with a clean house, working out every little detail, and then you go to bed at night and realize it wasn't the day! I remember those days so well...
Aside from the media campaign, I still have to keep busy: mom of 9 wouldn't want to be lazy...!
I had a very productive day. I went out for a run this morning and it felt very good. I went yesterday and it did not feel so good with a temperature of 26 Celsius below zero with the windchill factor! I officially started my half-marathon training for the race in Ottawa at the end of May. Last big racing event I did was my marathon (42.2k) 2 years ago. I have been battling injuries since and had whooping cough last winter, which forced me to stop right in the middle of a full marathon training I was supposed to do last May. I worked up my distance to 26k. I remember that Sunday, I was supposed to do 19k. I added a few more, in honour of a little girl with Alagille who had just had a transplant that very same week. Beautiful little R truly inspired me that day...
The half is a nice distance (21.1k), not too too time consuming, and I hope to be able to do all the training in spite of the transplants. And it will also keep me honest with myself. Running makes me feel good, once I come back home;) We are experiencing quite the frigid temperatures this winter, and it makes for easy excuses not to go out. But I have had a big ball of tears in my throat for weeks now, and the only time it comes out, is when I am running. Crying while running outside under very cold temps hurts the cheeks ;) It should get better with warmer weather.
______________________________
I am just randomly babbling here... I just went to shut off Phuoc's feeding pump and lost my train of thoughts. I will lose it again in a few minutes when Binh's beeps... Just like a fog horn in the night. It is what it sounds like,when it beeps in your sleep, I am telling you! And then, you pretend you are sleeping sound... until your husband gets up to shut it off... Same routine with the baby crying at night... I had a lot of valuable training with that ;)
______________________________
Back to my productive day...
Since the twins will be immunocompromised after transplants, I decided that there could be no hidden dust in the house: so I had all the duct work for heating and AC cleaned up by a very nice and professional man. I was so impressed by his service! And I killed two birds with one stone! He also was able to provide carpet cleaning services. So I had the 2 stairways done. It feels good tonight to know that we can breathe good quality air! I also secured house cleaning services weekly for the time I will be away in Toronto. The very nice lady who makes awesome cookies and who is known to be quite magical, aka Grammie, does not need to worry about that, on top of taking care of 7 grandchildren...! And to make sure I was keeping busy, I spent every spare moment tending to our Facebook page enquiries and talking to more media people.
Hubby left for Toronto today for the last steps before transplant. No, WE DO NOT have a date yet! I want to enjoy each day before the first transplant to the fullest with the twins. I had the chance today to enjoy their crankiness to the fullest since they were really in a bad mood this morning! And they feed off each other during those days.
No news either about the 2nd donor. All I know is that they can only assess one potential donor at a time for each twin. And since one donor has been found already, it means one person through the mill at a time.
Time to go to bed, morning will come soon enough!
It also reminds me of how I felt at the end of each pregnancy: you know it will happen, you try to be ready at all times with a clean house, working out every little detail, and then you go to bed at night and realize it wasn't the day! I remember those days so well...
Aside from the media campaign, I still have to keep busy: mom of 9 wouldn't want to be lazy...!
I had a very productive day. I went out for a run this morning and it felt very good. I went yesterday and it did not feel so good with a temperature of 26 Celsius below zero with the windchill factor! I officially started my half-marathon training for the race in Ottawa at the end of May. Last big racing event I did was my marathon (42.2k) 2 years ago. I have been battling injuries since and had whooping cough last winter, which forced me to stop right in the middle of a full marathon training I was supposed to do last May. I worked up my distance to 26k. I remember that Sunday, I was supposed to do 19k. I added a few more, in honour of a little girl with Alagille who had just had a transplant that very same week. Beautiful little R truly inspired me that day...
The half is a nice distance (21.1k), not too too time consuming, and I hope to be able to do all the training in spite of the transplants. And it will also keep me honest with myself. Running makes me feel good, once I come back home;) We are experiencing quite the frigid temperatures this winter, and it makes for easy excuses not to go out. But I have had a big ball of tears in my throat for weeks now, and the only time it comes out, is when I am running. Crying while running outside under very cold temps hurts the cheeks ;) It should get better with warmer weather.
______________________________
I am just randomly babbling here... I just went to shut off Phuoc's feeding pump and lost my train of thoughts. I will lose it again in a few minutes when Binh's beeps... Just like a fog horn in the night. It is what it sounds like,when it beeps in your sleep, I am telling you! And then, you pretend you are sleeping sound... until your husband gets up to shut it off... Same routine with the baby crying at night... I had a lot of valuable training with that ;)
______________________________
Back to my productive day...
Since the twins will be immunocompromised after transplants, I decided that there could be no hidden dust in the house: so I had all the duct work for heating and AC cleaned up by a very nice and professional man. I was so impressed by his service! And I killed two birds with one stone! He also was able to provide carpet cleaning services. So I had the 2 stairways done. It feels good tonight to know that we can breathe good quality air! I also secured house cleaning services weekly for the time I will be away in Toronto. The very nice lady who makes awesome cookies and who is known to be quite magical, aka Grammie, does not need to worry about that, on top of taking care of 7 grandchildren...! And to make sure I was keeping busy, I spent every spare moment tending to our Facebook page enquiries and talking to more media people.
Hubby left for Toronto today for the last steps before transplant. No, WE DO NOT have a date yet! I want to enjoy each day before the first transplant to the fullest with the twins. I had the chance today to enjoy their crankiness to the fullest since they were really in a bad mood this morning! And they feed off each other during those days.
No news either about the 2nd donor. All I know is that they can only assess one potential donor at a time for each twin. And since one donor has been found already, it means one person through the mill at a time.
Time to go to bed, morning will come soon enough!
Monday, January 26, 2015
Individual Requests
Hello All!
I am unable to answer individual emails about donations. To know about the steps involved, please refer to the post from January 25, 2015. Thank you to all who are interested, it means a lot to us! Please contact directly the Toronto General Hospital (liver transplant assessment office) as we can't get personally involved in applicants' process. Thank you for your understanding!
I am unable to answer individual emails about donations. To know about the steps involved, please refer to the post from January 25, 2015. Thank you to all who are interested, it means a lot to us! Please contact directly the Toronto General Hospital (liver transplant assessment office) as we can't get personally involved in applicants' process. Thank you for your understanding!
Sunday, January 25, 2015
How To Donate A Part of Your Liver ;)
Hello Dear Readers!
I am getting so many versions of the same question: how do I go about donating a part of my liver?
It is obvious that I need to repost the criteria to be met. Here we go, hold on to your hats!
A potential live liver donor must:
1) be older than 18 years of age and younger than 60 years of age;
2) be in good overall health and physical condition;
3) have a compatible blood type: A or O (rhesus factor + or - does not matter);
4) have a BMI of less than 35 to be worked up for consideration and no greater than 32 at the time of surgery (transplant).
Work up takes 3-4 days in Toronto. At the time of surgery, donor can expect to be in hospital for 5-10 days. The donor can expect to be off work for about 6 weeks. The donor's liver will regenerate and regrow to its original size within 6-8 weeks.
The Trillium Gift of Life Network can offer financial help through their PRELOD program.
http://www.giftoflife.on.ca/resources/pdf/PRELOD%20FAQ.pdf
Please note that REGULATIONS PROHIBIT FAMILIES OF RECIPIENTS TO FINANCIALLY HELP POTENTIAL DONORS.
If you are interested in being a live liver donor for our daughters, please contact:
Toronto General Hospital (UHN)
Living Donor Assessment Office
416.340.4800 ext: 6581
and specify that you are willing to be assessed to donate to either THI BINH LA or THI PHUOC LA (date of birth 14 May 2011).
You can also go to their website:
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/LivingDonor_LiverDonorManual.pdf
or print the Donor Health History and fax it at 416.340.4317
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/MOT_PF_CC_LivingDonor_DonorHealthHistoryForm.pdf
I am getting so many versions of the same question: how do I go about donating a part of my liver?
It is obvious that I need to repost the criteria to be met. Here we go, hold on to your hats!
A potential live liver donor must:
1) be older than 18 years of age and younger than 60 years of age;
2) be in good overall health and physical condition;
3) have a compatible blood type: A or O (rhesus factor + or - does not matter);
4) have a BMI of less than 35 to be worked up for consideration and no greater than 32 at the time of surgery (transplant).
Work up takes 3-4 days in Toronto. At the time of surgery, donor can expect to be in hospital for 5-10 days. The donor can expect to be off work for about 6 weeks. The donor's liver will regenerate and regrow to its original size within 6-8 weeks.
The Trillium Gift of Life Network can offer financial help through their PRELOD program.
http://www.giftoflife.on.ca/resources/pdf/PRELOD%20FAQ.pdf
Please note that REGULATIONS PROHIBIT FAMILIES OF RECIPIENTS TO FINANCIALLY HELP POTENTIAL DONORS.
If you are interested in being a live liver donor for our daughters, please contact:
Toronto General Hospital (UHN)
Living Donor Assessment Office
416.340.4800 ext: 6581
and specify that you are willing to be assessed to donate to either THI BINH LA or THI PHUOC LA (date of birth 14 May 2011).
You can also go to their website:
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/LivingDonor_LiverDonorManual.pdf
or print the Donor Health History and fax it at 416.340.4317
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/MOT_PF_CC_LivingDonor_DonorHealthHistoryForm.pdf
Friday, January 23, 2015
Update With Media Attention
Hello All:
I never ever thought our life could become suddenly so interesting! We are just normal folks living normal lives after all, with the exception that our little girls need each a liver transplant. Wait a minute... This is far from being normal, liver transplants??? Your support is AMAZING and it feels so very good!!!
All kidding aside, here are a few points:
1) Husband has been cleared as a viable live liver donor for one of the twins. This transplant *should* take place in about 2 weeks. Until this transplant is completed, there is no guarantee.
2) We still need to find a second donor for the 2nd twin. WE HAVE NOT BEEN NOTIFIED YET THAT A DONOR HAS BEEN FOUND. I have been told the assessment office in Toronto is turning applications away... Maybe the fax needs more paper? Ha ha ha.
3) I am unfortunately unable to respond to individual requests due to the high number of messages coming. I feel very bad about this, but I will feel worse if I have to let the children to themselves while I am on the computer ;)
4) Many have asked what kind of help we need. Train (Via Rail) vouchers would be great to assist us with the commuting back and forth from Kingston and Toronto for 7 children and 2 adults they know well to escort them. We drive a type of vehicle that requires a special driver's license very few people have. In addition, our oversized vehicle does not fit in underground parkings.
5) Believe me, every effort will be made on our part to keep everyone informed of the progress of our journey to transplant for both twins.
6) Lastly, here are the criteria for donation:
Binh and Phuoc, 3.5 years old, were adopted from Vietnam in 2012. Both twin girls suffer from Alagille syndrome, a genetic disorder that affects the liver, heart, kidney, and other systems of the body. Both twins are now listed on the liver transplant list, waiting for a life-saving liver transplant to take place at the Hospital for Sick Children, in Toronto, Canada. It could take a long time for livers from deceased donors to come their way. Another life-saving option for each twin is live liver donation.
A potential live liver donor must:
1) be older than 18 years of age and younger than 60 years of age;
2) be in good overall health and physical condition;
3) have a compatible blood type: A or O (rhesus factor + or - does not matter);
4) have a BMI of less than 35 to be worked up for consideration and no greater than 32 at the time of surgery (transplant).
Work up takes 3-4 days in Toronto. At the time of surgery, donor can expect to be in hospital for 5-10 days. The donor can expect to be off work for about 6 weeks. The donor's liver will regenerate and regrow to its original size within 6-8 weeks.
The Trillium Gift of Life Network can offer financial help through their PRELOD program.
http://www.giftoflife.on.ca/resources/pdf/PRELOD%20FAQ.pdf
Please note that REGULATIONS PROHIBIT FAMILIES OF RECIPIENTS TO FINANCIALLY HELP POTENTIAL DONORS.
If you are interested in being a live liver donor for our daughters, please contact:
Toronto General Hospital (UHN)
Living Donor Assessment Office
416.340.4800 ext: 6581
and specify that you are willing to be assessed to donate to either THI BINH LA or THI PHUOC LA (date of birth 14 May 2011).
You can also go to their website:
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/LivingDonor_LiverDonorManual.pdf
or print the Donor Health History and fax it at 416.340.4317
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/MOT_PF_CC_LivingDonor_DonorHealthHistoryForm.pdf
In the name of Binh and Phuoc, we thank you for your consideration and your help.
Johanne and Michael
parents
I never ever thought our life could become suddenly so interesting! We are just normal folks living normal lives after all, with the exception that our little girls need each a liver transplant. Wait a minute... This is far from being normal, liver transplants??? Your support is AMAZING and it feels so very good!!!
All kidding aside, here are a few points:
1) Husband has been cleared as a viable live liver donor for one of the twins. This transplant *should* take place in about 2 weeks. Until this transplant is completed, there is no guarantee.
2) We still need to find a second donor for the 2nd twin. WE HAVE NOT BEEN NOTIFIED YET THAT A DONOR HAS BEEN FOUND. I have been told the assessment office in Toronto is turning applications away... Maybe the fax needs more paper? Ha ha ha.
3) I am unfortunately unable to respond to individual requests due to the high number of messages coming. I feel very bad about this, but I will feel worse if I have to let the children to themselves while I am on the computer ;)
4) Many have asked what kind of help we need. Train (Via Rail) vouchers would be great to assist us with the commuting back and forth from Kingston and Toronto for 7 children and 2 adults they know well to escort them. We drive a type of vehicle that requires a special driver's license very few people have. In addition, our oversized vehicle does not fit in underground parkings.
5) Believe me, every effort will be made on our part to keep everyone informed of the progress of our journey to transplant for both twins.
6) Lastly, here are the criteria for donation:
Binh and Phuoc, 3.5 years old, were adopted from Vietnam in 2012. Both twin girls suffer from Alagille syndrome, a genetic disorder that affects the liver, heart, kidney, and other systems of the body. Both twins are now listed on the liver transplant list, waiting for a life-saving liver transplant to take place at the Hospital for Sick Children, in Toronto, Canada. It could take a long time for livers from deceased donors to come their way. Another life-saving option for each twin is live liver donation.
A potential live liver donor must:
1) be older than 18 years of age and younger than 60 years of age;
2) be in good overall health and physical condition;
3) have a compatible blood type: A or O (rhesus factor + or - does not matter);
4) have a BMI of less than 35 to be worked up for consideration and no greater than 32 at the time of surgery (transplant).
Work up takes 3-4 days in Toronto. At the time of surgery, donor can expect to be in hospital for 5-10 days. The donor can expect to be off work for about 6 weeks. The donor's liver will regenerate and regrow to its original size within 6-8 weeks.
The Trillium Gift of Life Network can offer financial help through their PRELOD program.
http://www.giftoflife.on.ca/resources/pdf/PRELOD%20FAQ.pdf
Please note that REGULATIONS PROHIBIT FAMILIES OF RECIPIENTS TO FINANCIALLY HELP POTENTIAL DONORS.
If you are interested in being a live liver donor for our daughters, please contact:
Toronto General Hospital (UHN)
Living Donor Assessment Office
416.340.4800 ext: 6581
and specify that you are willing to be assessed to donate to either THI BINH LA or THI PHUOC LA (date of birth 14 May 2011).
You can also go to their website:
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/LivingDonor_LiverDonorManual.pdf
or print the Donor Health History and fax it at 416.340.4317
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/MOT_PF_CC_LivingDonor_DonorHealthHistoryForm.pdf
In the name of Binh and Phuoc, we thank you for your consideration and your help.
Johanne and Michael
parents
Thursday, January 22, 2015
We Have A Donor!!!
Michael's assessment update:
Everything looks good, TRANSPLANT to take place in about 2 weeks, after the MRI has been reviewed in detail, date will be set.
WE HAVE A DONOR for one of the girls!!! We need one more!
Everything looks good, TRANSPLANT to take place in about 2 weeks, after the MRI has been reviewed in detail, date will be set.
WE HAVE A DONOR for one of the girls!!! We need one more!
Wednesday, January 21, 2015
My Husband on TV to Speak About the Girls
Interview with my husband Michael on Canada AM, at 2:06:28 into the program.
http://canadaam.ctvnews.ca/video?clipId=531429&playlistId=1.2197115&binId=1.815908&playlistPageNum=1&binPageNum=1
We should know by the end of the day if my husband is a candidate for live liver donation.
http://canadaam.ctvnews.ca/video?clipId=531429&playlistId=1.2197115&binId=1.815908&playlistPageNum=1&binPageNum=1
We should know by the end of the day if my husband is a candidate for live liver donation.
Monday, January 19, 2015
Fundraiser for Binh and Phuoc January 20!
Hello All!
Don't forget to join us tomorrow for a fundraiser organized for Binh and Phuoc! A Jamberry Fundraiser! Even if you are not into pretty nails, I bet you know someone who is. Spread the word and let's have fun!
https://www.facebook.com/events/821487504590867/
Don't forget to join us tomorrow for a fundraiser organized for Binh and Phuoc! A Jamberry Fundraiser! Even if you are not into pretty nails, I bet you know someone who is. Spread the word and let's have fun!
https://www.facebook.com/events/821487504590867/
Sunday, January 18, 2015
Hitting so many ''Likes''!
Our media campaign has been fruitful! We have hit over 600 Likes on our Facebook page.
https://www.facebook.com/pages/Liver-Transplants-for-our-Vietnamese-Twin-Girls/1401239010168456
On Tuesday Jan 20, there will even be a Jamberry fundraiser for Binh and Phuoc: you are all welcome to join in for an evening of fun, in the comfort of your home ;)
https://www.facebook.com/events/821487504590867/
People are being so generous! So many are coming forward with encouraging words, it is like a boost!
My dear husband Michael left for Toronto this afternoon. He is to be seen again for further assessment by the transplant team at Toronto General. Could he possibly end up being a donor for one of the twins??? Wouldn't this be amazing?
Please make note that my husband is to appear on TV on Tuesday Jan 20 on Canada AM (CTV network) around 8h30 Ontario time.
There is also an article in Thoi Bao this week about us. Thoi Bao is the weekly Vietnamese newspaper from Toronto-Montreal-Vancouver.
http://thoibao.com/cau-chuyen-cua-binh-va-phuoc-hai-be-gai-may-man/
Between the general public, the Military community and the Vietnamese community, the word is getting around!
We-will-find-two-livers.
https://www.facebook.com/pages/Liver-Transplants-for-our-Vietnamese-Twin-Girls/1401239010168456
On Tuesday Jan 20, there will even be a Jamberry fundraiser for Binh and Phuoc: you are all welcome to join in for an evening of fun, in the comfort of your home ;)
https://www.facebook.com/events/821487504590867/
People are being so generous! So many are coming forward with encouraging words, it is like a boost!
My dear husband Michael left for Toronto this afternoon. He is to be seen again for further assessment by the transplant team at Toronto General. Could he possibly end up being a donor for one of the twins??? Wouldn't this be amazing?
Please make note that my husband is to appear on TV on Tuesday Jan 20 on Canada AM (CTV network) around 8h30 Ontario time.
There is also an article in Thoi Bao this week about us. Thoi Bao is the weekly Vietnamese newspaper from Toronto-Montreal-Vancouver.
http://thoibao.com/cau-chuyen-cua-binh-va-phuoc-hai-be-gai-may-man/
Between the general public, the Military community and the Vietnamese community, the word is getting around!
We-will-find-two-livers.
Tuesday, January 13, 2015
Saturday, January 10, 2015
Article about the Twins in the Kingston Whig Standard
http://www.thewhig.com/2015/01/09/liver-donors-sought-for-twins
Tuesday, January 6, 2015
Daddy Being Assessed
My husband left for Toronto today for a preliminary assessment to be a live liver donor for one of the twins: one day of bloodwork, x-rays, EKG and a few more tests to see if he qualifies for the next 3-4 days round of tests. Several doors to cross. Let's hope he makes it to the next round!
Saturday, January 3, 2015
How To Donate: A Guide for the non Facebookers!
Since not everyone has a Facebook account, here is the contents of the About Section of our page:
Binh and Phuoc, 3.5 years old, were adopted from Vietnam in 2012. Both twin girls suffer from Alagille syndrome, a genetic disorder that affects the liver, heart, kidney, and other systems of the body. Both twins are now listed on the liver transplant list, waiting for a life-saving liver transplant to take place at the Hospital for Sick Children, in Toronto, Canada. It could take a long time for livers from deceased donors to come their way. Another life-saving option for each twin is live liver donation.
A potential live liver donor must:
1) be older than 18 years of age and younger than 60 years of age;
2) be in good overall health and physical condition;
3) have a compatible blood type: A or O (rhesus factor + or - does not matter);
4) have a BMI of less than 35 to be worked up for consideration and no greater than 32 at the time of surgery (transplant).
Work up takes 3-4 days in Toronto. At the time of surgery, donor can expect to be in hospital for 5-10 days. The donor can expect to be off work for about 6 weeks. The donor's liver will regenerate and regrow to its original size within 6-8 weeks.
The Trillium Gift of Life Network can offer financial help through their PRELOD program.
http://www.giftoflife.on.ca/resources/pdf/PRELOD%20FAQ.pdf
Please note that REGULATIONS PROHIBIT FAMILIES OF RECIPIENTS TO FINANCIALLY HELP POTENTIAL DONORS.
If you are interested in being a live liver donor for our daughters, please contact:
Toronto General Hospital (UHN)
Living Donor Assessment Office
416.340.4800 ext: 6581
and specify that you are willing to be assessed to donate to either THI BINH LA or THI PHUOC LA (date of birth 14 May 2011).
You can also go to their website:
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/LivingDonor_LiverDonorManual.pdf
or print the Donor Health History and fax it at 416.340.4317
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/MOT_PF_CC_LivingDonor_DonorHealthHistoryForm.pdf
Please ''like'' this page and share widely.
In the name of Binh and Phuoc, we thank you for your consideration and your help.
Johanne and Michael
parents
Binh and Phuoc, 3.5 years old, were adopted from Vietnam in 2012. Both twin girls suffer from Alagille syndrome, a genetic disorder that affects the liver, heart, kidney, and other systems of the body. Both twins are now listed on the liver transplant list, waiting for a life-saving liver transplant to take place at the Hospital for Sick Children, in Toronto, Canada. It could take a long time for livers from deceased donors to come their way. Another life-saving option for each twin is live liver donation.
A potential live liver donor must:
1) be older than 18 years of age and younger than 60 years of age;
2) be in good overall health and physical condition;
3) have a compatible blood type: A or O (rhesus factor + or - does not matter);
4) have a BMI of less than 35 to be worked up for consideration and no greater than 32 at the time of surgery (transplant).
Work up takes 3-4 days in Toronto. At the time of surgery, donor can expect to be in hospital for 5-10 days. The donor can expect to be off work for about 6 weeks. The donor's liver will regenerate and regrow to its original size within 6-8 weeks.
The Trillium Gift of Life Network can offer financial help through their PRELOD program.
http://www.giftoflife.on.ca/resources/pdf/PRELOD%20FAQ.pdf
Please note that REGULATIONS PROHIBIT FAMILIES OF RECIPIENTS TO FINANCIALLY HELP POTENTIAL DONORS.
If you are interested in being a live liver donor for our daughters, please contact:
Toronto General Hospital (UHN)
Living Donor Assessment Office
416.340.4800 ext: 6581
and specify that you are willing to be assessed to donate to either THI BINH LA or THI PHUOC LA (date of birth 14 May 2011).
You can also go to their website:
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/LivingDonor_LiverDonorManual.pdf
or print the Donor Health History and fax it at 416.340.4317
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/MOT_PF_CC_LivingDonor_DonorHealthHistoryForm.pdf
Please ''like'' this page and share widely.
In the name of Binh and Phuoc, we thank you for your consideration and your help.
Johanne and Michael
parents
Friday, January 2, 2015
Follow us on Facebook!
Hello All!
In a nutshell to sum up the last year and a half, the girls have been put on the waitlist for a liver transplant. Yes, TRANSPLANT!!! This happened on December 3, 2014. It has been a long road and I have isolated myself traveling it. This explains the lack of blog posts.
I reached a point where it seemed nothing was happening, like we were frozen in time. I even tried to bring myself to acceptance that there would never be a transplant for them. And just as my husband and myself had resigned ourselves that what was was going to be, the liver team at Sick Kids announced that it was time to list. It came as a big surprise as we were totally unprepared. Basically, we were told that there were no more gains to expect, that the livers were in acute cirrhosis, with lots of scarring, and that in order for them to survive, a transplant was necessary.
Back in December 2013, we were even admitted at Sick Kids in Toronto for a pre-transplant assessment. I was hopeful back then that they would be listed. The team decided otherwise, claiming the risks were still higher than the benefits, and that the main reason to list would be mainly for quality of life. We are now beyond the quality of life business.
Now what? We are now waiting for 2 livers to come our way. Cadaveric donations could take a while. Another option is live liver donations.
In order to raise awareness and hopefully interest, we have created a Facebook page that contains a lot of info and links. Here is the link:
https://www.facebook.com/pages/Liver-Transplants-for-our-Vietnamese-Twin-Girls/1401239010168456
Please VISIT the page, LIKE the page and SHARE it widely. And please CONSULT the ABOUT section of the page.
We are hoping for livers from type A or O potential live donors, who are physically healthy with a BMI below 35 to be considered. BMI must be below 32 at time of surgery. Potential live liver donors must be between 18 and 60 years of age.
Did you know a liver from a live donor will regenerate to its original size within 6 to 8 weeks?
Thank you for visiting us!
In a nutshell to sum up the last year and a half, the girls have been put on the waitlist for a liver transplant. Yes, TRANSPLANT!!! This happened on December 3, 2014. It has been a long road and I have isolated myself traveling it. This explains the lack of blog posts.
I reached a point where it seemed nothing was happening, like we were frozen in time. I even tried to bring myself to acceptance that there would never be a transplant for them. And just as my husband and myself had resigned ourselves that what was was going to be, the liver team at Sick Kids announced that it was time to list. It came as a big surprise as we were totally unprepared. Basically, we were told that there were no more gains to expect, that the livers were in acute cirrhosis, with lots of scarring, and that in order for them to survive, a transplant was necessary.
Back in December 2013, we were even admitted at Sick Kids in Toronto for a pre-transplant assessment. I was hopeful back then that they would be listed. The team decided otherwise, claiming the risks were still higher than the benefits, and that the main reason to list would be mainly for quality of life. We are now beyond the quality of life business.
Now what? We are now waiting for 2 livers to come our way. Cadaveric donations could take a while. Another option is live liver donations.
In order to raise awareness and hopefully interest, we have created a Facebook page that contains a lot of info and links. Here is the link:
https://www.facebook.com/pages/Liver-Transplants-for-our-Vietnamese-Twin-Girls/1401239010168456
Please VISIT the page, LIKE the page and SHARE it widely. And please CONSULT the ABOUT section of the page.
We are hoping for livers from type A or O potential live donors, who are physically healthy with a BMI below 35 to be considered. BMI must be below 32 at time of surgery. Potential live liver donors must be between 18 and 60 years of age.
Did you know a liver from a live donor will regenerate to its original size within 6 to 8 weeks?
Thank you for visiting us!
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