Saturday, April 29, 2017

Our New Website Was Born!

Officially in operation, here is our joy and pride, our new website!

http://twinsforhope.org

Our door is wide open, please pay us a visit!

Johanne, Kris and the Twins for Hope Team!

Saturday, April 15, 2017

Medicating or not: Only stubborn people never change their minds...

Growing up, I used to hide under my mom's skirt.  I was shy, obedient, quiet. I never spoke up. I actually was fearful of authority.

I remember looking at classmates who were misbehaved with total incomprehension. How could they  be so disrespectful? I felt bad for the poor teachers.

It never occurred to me that maybe some of those kids could not help themselves.

And then I became a teacher. I was comfortable with using a very conservative type of class management. I like to think of the analogy of the iron fist in the velvet glove approach. Naive and convinced that my imposed discipline would prevent students from being defiant and misbehaved, I quickly woke up to the reality of the then mid nineties. Teachers training ill-prepared future teachers to deal with the more challenging cases: that was the job of special ed teachers. I remember the Ritalin parades at lunch time, before the longer acting version of the medication came out. It seemed epidemic to me. How could parents in their right minds put their kids on medication at such a young age? Never would I do that to my kids. After all, when you're the perfect teacher who can control a class, why wouldn't you become a perfect parent?

It never occurred to me that maybe some of those kids could not help themselves.

And then I became a parent, blessed with ''healthy and normal'' kids at first. Kids who behaved reasonably well, except for the occasional bacon strip in public. The perfect kids for the perfect teacher, always aiming to be the best mother.

I will never forget the comment the director of the orphanage jokingly made when I picked up my little Toan, back in 2011: ''a little handful!'' What did she mean by that? Shy little one year old Toan extended his arms towards me when I bent over the crib to look at him. A true charmer. Obviously, love at first sight. The perfect pair, mom and son.  An inner promise that I would always be there for him, no matter what.

Initially believed to maybe suffer from cerebral palsy which was quickly refuted, Toan was a quiet little boy, most likely overwhelmed by the new environment presented to him. Instantly the youngest of 7, we felt lucky that he adapted quickly to his new life. But not without tears. I was his buoy and he felt safe and secure as long as I was in sight. We became medical appointments buddies as we tackled his many issues including malnutrition, cryptorchidism, ptosis, clasped thumbs, speech therapy, and trying to put a name on the package: I felt the need to sum it all up with a label. The diagnosis took 3 years to come to light through genetic testing: Noonan syndrome.

Easy. For the physical part of things. Growth hormonal therapy would ensure the maximum growth achievable for him.

Around the age of three, we noticed some withdrawal on his part. He would make eye contact but would often pay more attention to objects than people. He would often be found playing on his own, by choice, in spite of having so many siblings. He became a ''collector'', taking things that did not belong to him and hide them. The notion of Toan's secret stash became the running joke in the family.  He also showed on several occasions that he had zero filter, putting his mommy in very embarrassing situations...! He became very impolite and would lecture us on a regular basis.

We went through autism testing twice. To my greatest frustration, both evaluators were not able to put him anywhere on the ASD.

His behaviour at home worsened. Aggressive, obnoxious to everyone in the house, spiteful, vindictive. Fit upon fit. Some lasting longer than others. Everyone took turn getting upset with him. And all along, I knew it was affecting him. I could feel there was a tornado inside of him.

It did occur to me that maybe my little guy could not help himself.

His paediatrician is the first one who mentioned ODD to me: oppositional defiant disorder. With ADHD she believed. I went home with questionnaires for Michael, the teachers and myself to fill out. Filling them out, both Michael and I were in fits of laughter as it seemed to describe our little boy to a T. At school, it came out more as an attention deficit. Is this what could explain his learning challenges? How could my boy ''hold himself'' for a full day at school only to lash out as soon as he got home?

I had a long talk with the doctor about treatment. Ritalin was an indication to treat his ADHD and hopefully help with his ODD.

I would become one of those parents. Did this mean I was no longer the perfect mother?

Luckily, I did not dwell too long. You see, adoption has been a true blessing for me as it rid me of a lot of superficial worries and guilt. When you are in medical survival mode with special needs children, you quickly learn that there are many good alternatives for the sake of your child's well being. What I used to swear by with my ''perfect healthy children'' ceased to apply in the care of my special needs beauties. And I also believe age makes you wiser...

We decided to try Ritalin a little over a week ago. It was an overnight change. At school, Toan is more engaged in learning. At home, he is a joy to have around.  And I bet his self-esteem benefits from the treatment as everyone, including him, is happier and more positive.

It is when it gets better that you realize how difficult it was.

Monday, September 5, 2016

Twins for Hope Fundraising with Mabel's Labels

Like us on Facebook https://www.facebook.com/twinsforhope/

It's Back to school!  

Helping Twins for Hope bring relief to impoverished children in Vietnam is easy with Mabel's Labels!  Just click on the following link:

http://mabelslabels.com/c/?type=fundraiser&b=4590&cur_website=base

Label your children's belongings and shrink the lost and found! These amazing customized labels are microwave, dishwasher and laundry safe.  Only one click can help make a difference in the life of a child with Twins for Hope!

Sunday, August 28, 2016

Twins for Hope

Like us on Facebook:
https://www.facebook.com/twinsforhope/
https://www.facebook.com/Liver-Transplants-for-our-Vietnamese-Twin-Girls-1401239010168456/



Twins for Hope




Our exciting adventure with Binh and Phuoc and the family has taken an even more exciting turn.  The Wagner Clan has welcomed a new member in the person of Binh's anonymous live liver donor.  Kris Chung is now part of our lives, in a big way.  We have gained a son, a brother, an ally, a best friend, you can call this whatever way you want if you absolutely feel compelled to give this relationship a name.  All I can say is that he fits the profile to be called family to a T!

Here is how it all happened: thanks to an anonymous tip given to me a few weeks after Binh's transplant, the mystery of who the anonymous donor was was ruined.  What was a curse for me at the beginning slowly turned into a blessing as Kris and I started to connect over the following year.  You can learn about how we got together in the following links:

http://www.macleans.ca/news/canada/the-miracle-twins-and-the-unknown-hero/

https://www.thestar.com/news/2016/08/19/kris-chung-on-the-selfless-act-of-organ-donation-to-kingston-twins.html

I had always wanted to create something as a legacy for Binh and Phuoc: a way for them to give back after receiving so much from life. I shared my plans with Kris and he jumped right in, to my surprise, I must admit!


Twins for Hope was officially incorporated in June 2016 to become a Canadian based not for profit organization, with a focus on assisting children and families in need in Vietnam.  Twins for Hope wants to ensure that Vietnamese children in need receive medical, educational, and community support they deserve. This includes access to safe and secure shelter, medical attention and schooling, so that they can thrive and grow to be productive members of their community.


Twins for hope will work diligently to advocate for children that do not have a voice – giving them the opportunity to take part in society, thereby ensuring that the individual child as well as the greater community benefit from this untapped human potential. 


Twins for Hope is Kris Chung, Binh and Phuoc, and myself.  But Twins for Hope can't be without support.

I invite you to VISIT our Facebook page https://www.facebook.com/twinsforhope/, to LIKE it and to SHARE it.   Visibility is the key!

I also invite you to VISIT our fundraising page https://www.gofundme.com/2exgdr8v  where you will be able to read about our PROJECTS for our upcoming trip to work in the community in Vietnam.

Yes, once again I am knocking at your door for help.  I am a crazy woman with crazy ideas.  Please join me in my craziness!!!









Tuesday, June 28, 2016

Putting a Face on Organ Donation



Our appeal to find live liver donors for both twins traveled around the world almost at the speed of light.  Messages landing by the hundreds in my Facebook account set up for the twins (https://www.facebook.com/Liver-Transplants-for-our-Vietnamese-Twin-Girls-1401239010168456/) came from people from all kinds of different ethnic backgrounds.  People of all races, of all ages, both men and women, speaking all kinds of different languages: all united by the same desire to make a good deed.

When Binh went in to receive her gift of life in the form of a liver coming from a live anonymous individual, I started to fantasize about who that person might be.  Was this person a mother herself, pushed by compassion, solidarity, and the realization that this could very well happen to her own children?  Or was this person a father like my husband, inspired by what Michael did and wanting to help us out?  Could this person be a young man with a bright future ahead of him and a strong desire to make the world around him a better place?  Or was this person a young woman who had been personally affected by someone in need of an organ donation?

Whoever that person might be, I had come to accept that they might or might not reach out to us.  I suspected they would probably follow the Facebook page (https://www.facebook.com/Liver-Transplants-for-our-Vietnamese-Twin-Girls-1401239010168456/) if they wanted to follow Binh’s progress.

The mystery did not last for very long.  A few weeks after Binh’s liver transplant, an anonymous person, hidden behind a false identity, revealed to me the identity of the donor, in a private message.  I remember feeling enraged for having the donor’s identity thrown at me.  The name and face of that special person was to be forever engraved in my memory.  I remember feeling concerned for the donor who wanted to remain anonymous.  I also remember feeling like I was betraying the donor: I knew who they were, but could not say anything.

I tried carrying on for months with this secret in my heart, unsuccessfully.  I became consumed with the idea of this missing family member, especially around bigger family events.  The weight of the anonymity became unbearable.  However, with deep respect, I made a plea to myself to wait the person out.  I worked on trying to accept that they might never reach out.  

I went through months of sadness and emotional pain.  All I wished was to be able to say thank you in person to that special person for saving my daughter’s life.  Was that person feeling the same distress for not being able to witness her progress in real life?

Fortunately, the curse of knowing who this person was, slowly became a blessing as we started to exchange in private written conversations, discovering our common views on Life.  It became a well-coordinated dance with words, like a tango, always mindful of the other while sharing deeper thoughts, always in respect.  But never mentioning the organ donation.

 I reached out to the Living Donor Transplant Program at the hospital in hopes that a meeting could be facilitated, or at the very least, that the donor could be notified that we were willing to meet.  Little did I know then that our donor had expressed the same wish to the Program.  Both our requests were denied.  The integrity of the Program would be protected, to the detriment of the emotional well being of both the donor and the recipient’s family.   The principle of anonymity would not be compromised.  It would prevail.

I believe that from that moment on, we both decided we had to eventually break the silence. Thanks to social media, thanks to the anonymous person who revealed to me in the first place who the donor was, we were able to reach that turning point.  Binh’s donor and our family were able to meet.  Our meeting has turned better than expected.  Our family has gotten bigger with this new member joining in.  The mystery person was demystified, in simplicity and naturally.  We are grateful for what Life has given us.  Binh will be able to grow up with this person as part of her life, and this person will have the joy to see the product of the hardship they went through to save her life.


What is to be said of those donors and recipients who have never made the headlines and who might suffer in silence from not being able to bring closure?  How are they supposed to find each other on their own, without any support? While we understand the position of the Program on the respect of the anonymity status, we also believe each case has to be treated individually, in order to ensure the well-being of all parties involved. We understand that not all stories will end like ours. Let’s face it: we were particularly lucky to be such an excellent match of characters on top of being a perfect organ match. However, we each have lived through the imposed silence and believe it is the responsibility of live organ donation programs in the various institutions operating such programs to ensure both recipients and donors are well taken care of.

Sunday, March 20, 2016

The Tale of a Second Transplant

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(The exact date of Binh’s transplant surgery will remain a cherished little secret between the donor and us.)

My daughter Rose, Binh and I left Kingston by train 2 days before Binh’s transplant, loaded with our personal items as well as with a lot of medical supplies.  Pre-transplant, each girl was on quite the medication regimen and also still had a gastric tube, which in itself requires a lot of gear: feeding pump, IV pole and dressings of different kinds.  In addition, we had no idea of how long I would stay in Toronto, so I brought many different things to make life at Ronald McDonald House (RMH) more comfortable.

Michael, still weakened by Phuoc's transplant, stayed in Kingston with Phuoc on daily homecare nursing, grammie and the rest of the children.

We arrived at Toronto Union and met with a friend who had offered to drive the gear to RMH for me.  An organized, thoughtful and well-planned Service Woman, she had also bought a few things to garnish our mini fridge.  Once at RMH, we settled our room and made our beds.  With suppertime approaching, Rose, Binh and I headed out and walked randomly (Binh was comfortably being pushed in her stroller…).  We decided on some Thai food in a cute little spot on Dundas.

I remember watching Binh: she had no idea of what was happening.  I remember thinking of how nervous Michael got in the days leading up to surgery: the only times I had seen him that nervous was when we bought our first house, and prior to his first tour in Afghanistan.  I remember having a thought for the donor: how was he or she feeling?  Binh barely ate.  Liver disease made her nauseous to the point she had no interest in eating.

We went back to RMH to prep the meds and prepare her pump for the night.  We snuggled in bed and binged on free cable tv.

Binh was admitted the next morning, the day before transplant.  Many tests were done on that day to make sure she was ready for the ordeal.  Stool sample, chest x-rays, bloodwork upon bloodwork, and finally, some IV lines were inserted early evening.  Never an easy thing to do with the twins.  The IV team came in the room, ready for the challenge.  She earned an Elsa crown and wore it with pride.  Rose walked back to RMH before dark and I stayed with Binh on 6A at Sick Kids.  It all seemed too familiar, having been through the same thing with Phuoc.  However, with Phuoc, I knew Michael would show up for sure.  Would our donor show up for Binh?  I can’t believe I ever had doubts.  I remember asking Life to give this person the strength needed to go through so much.  They were going towards the unknown.  But I had seen Michael…

I woke Rose up by phone the morning of the transplant at 7h00 to hurry her to the hospital.  Binh was still sleeping.  The transplant nurse came in and told me the donor had arrived across the street.  I cried so much.  Relief, and fear for him or her.  ''Who would do such a thing for my daughter…  This little orphaned girl who was given so little credit at first…'' Crazy thoughts were going through my mind.

Timings are blurry.  Rose arrived and we waited quite a while before heading to the holding area with Binh.  Once there, she got quite agitated and was given a sedative.  She became limp and heavy in a matter of seconds.  I met with the OR team and was explained once more how things would go.  Binh being basically unconscious made it easier.  Also, there was no camera crew in the room, unlike the first time around.  The whole event was kept under wrap.  I kissed my Beauty good luck, watched her go and cried.  Again.

Rose kept me busy, although I have no memories of what happened until 3h00 pm.  I realized then that things were not matching with the first time around.  The liver had not been transferred yet from Toronto General.  Was everything ok?  Was the donor ok?  It’s at 3h15 pm that I got confirmation that the liver had just been transferred and that the donor would be out in a few hours.  Binh had been all prepped (it takes up to 2 hours to insert all the lines and prep for the actual transplant).  ''Beautiful liver'' I was told.  Good job Donor on being a healthy person!

Binh’s surgery took 10 hours.  I met the doctor late that night it seems.  I remember some of the words coming out of his mouth: ‘’New liver on the bigger size, smaller hepatic artery than anticipated for Binh, micro surgeons called in, abdominal wall closed, g-tube kept, ICU for up to a week’’.  All in all, relief that she was most likely to pull through, like her twin sister.

I was able to see her in ICU a while after.  Beautiful little doll who had gone trough so much.  A vision all too familiar to me. 

I walked back to RMH that night, just staring at the windows around where Michael’s room was a while ago.  I knew that that person was in absolute pain.  I was hoping that someone was with him or her to advocate for his or her needs.  That person’s gratification was to know they had saved a little girl’s life.  Totally unselfish act of heroism.  They would not get the gratification of an embrace with Binh a few days later like Michael had with Phuoc.  This still blows me away.  But they sent their love our way, through the team.

The first day after surgery is referred to as day 1.  I made my way to the ICU with Rose early in the morning (always saluting our donor in my heart as I was walking in front of TGH), after having phoned overnight to see how she was.  Binh had a much more difficult time than her sister.  She had to be tied to the bed for much longer as she only had one idea in mind: pulling all tubes out, including the breathing tube.  My little lion, my fighter.  Heavy sedation and morphine were the only solution.  As mentioned before, the liver was a bit big for her and this made breathing trickier.  In addition, she suffered from partial paralysis of her diaphragm.  This happens in 10% of cases.  I was allowed to hold her in my arms for a brief moment.  First liver ultrasound was done and the results were A-1.  New liver was working beautifully.

Day 2:  Her breathing tube was removed.  Shortly after, she had a big seizure.  That took us all by surprise.  CPAP was brought in to help with her breathing, until the diaphragm wakes up and starts working on its own.  Eyes started to clear, orange tinge fading away.

Day 3 and day 4: breathing therapy with CPAP on around the clock.  Once Binh was no longer attached to her bed to restrain her, I never ever saw her scratch again.  Itching disappeared right away.

Day 5: Off CPAP!  But still in ICU.  By this time, I was thinking our donor might be on discharge avenue…  Always sending good vibes his/her way…

Day 6: Binh had her first post transplant poop.  ½ white (typical of liver disease), ½ brown, a sign of a good working liver!  Mom even took a picture!  Discharge from ICU and move to 6A: victory!  Xanthomas started to ''melt'' on her knuckles.

All the time Binh was in ICU, I went back to RMH to sleep at night.  This went on as long as she was on one on one nursing.

Day 7:  Fever started, with her wound leaking.  Her intra jugular lines also got infected.  On top of that, we started to work on weaning from morphine.  This is not fun to witness.

Day 8: her true self came back.  In a bad mood, she showed the exit door of her room to the well meaning clown, and put mommy in the doghouse.

Day 9: first walk to the playroom!  Later that day, insertion of picc line. A surgery in itself.

Day 10: She became lethargic with a low haemoglobin.  The culprit: Passenger Lymphocyte Syndrome.  The residual white blood cells from the donor started to attack her red blood cells.  The donor was blood type O and Binh is blood type A.  She received transfusions of type O blood to calm down and satisfy the donor’s white cells until they die.  Fascinating.

Day 11 is when we got her dressed for the first time.

More episodes of low haemoglobin happened, with more transfusions in the following days.

I walked in front of TGH that day and saw people obviously being discharged.  Our donor was probably already gone by then.

In the mean time in Quebec city, my father was admitted to the hospital.  So was my mother.  My father suffered from Alzheimer’s, mom has heart problems.  My dad’s health deteriorated very quickly.   He fell and broke his pelvis while in hospital.  As Binh was receiving transfusions, so was he.  At the same time.  I last spoke to him 2 days before he died.  He never forgot my name and always remembered my children.  He loved them all.  This was the last time I heard him say my name.  Had he been able to talk more, I know he would have told me to stay with my daughter in Toronto.  That’s why I stayed with Binh.  I told him Binh was going to be ok.  I think this might have been his green light to stop fighting.

After his passing, Michael made his way back to Toronto with Phuoc to allow me to attend the funeral with our older 3 daughters.  Our 4 sons stayed in Kingston with Grammie.

Looking back, it feels like I was hit by a truck.  I remained numb for months.  An emotional wreck.  But I am a master at hiding those things in public.  Some days are still very hard, especially with all those anniversaries.

This second transplant has a happy ending though.  Binh bears the piece of liver of a wonderful person.  When I hug my little girl, it is surreal to think that she shares more with this person physiologically than with me.  And I see the same thing when I watch Michael and Phuoc together.


Binh has never had any rejection episode: a match from heaven!

Our story made headlines around the world: Michael and I are only the instruments, the voices speaking on behalf of Binh and Phuoc.  Those two little girls who at some point had no future, have saved many lives through their sufferings.

Be an organ donor, like me.  Register and make your intentions known by your friends and family.  Become the voice for those waiting for the Gift of Life.  Be their advocate.