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.
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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 ;)
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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!

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

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

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!

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.

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/

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.


Saturday, January 10, 2015

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

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!