Wednesday, August 30, 2017

Alagille, Noonan, and then JIA...

When you think of arthritis, what comes to mind is something that afflicts older people. A natural part of the aging process I guess. My father had polio at a very young age and I grew up hearing about how sore he always was: ''my arthritis'' he would say, rubbing Tiger Balm or having my mom apply a sore muscle patch on his back!  I can close my eyes and still remember the smell... He claimed he could predict the weather forecast through his body. Having suffered from migraines until childbirth, I can actually believe our body senses the changes in barometric pressure.

My Dear Daughter was a late walker and I remember well her grand-papa being worried because she never crawled on her knees. When she did decide to move, it was commando style crawling. We used to jokingly say she was lazy: she would sit on the floor, point at things and her sweet sister, older by 17 months, would service her complacently. She was the child who would go to her bedroom right after lunch, and sleep until 4h00 pm. And that much sleep never affected her bedtime routine. She was the easiest child. Looking back now, I am wondering if she did not live with pain much before she started complaining. We will never know. 
It's at the age of about 8 or 9 that she started to complain of knee pain on a regular basis, which we unfortunately mistakingly took for growing pain. And then she went through quite a growth spurt at the end of elementary school. She used to be quite active, but would constantly complain.
It took a bad turn during the summer when she was 12: I remember her being unable to move or go up the stairs. Dear Daughter having a tendency to be a wee bit dramatic, we thought at first she was acting up. It became clear she was not. After a quick visit to the paediatric orthopedist and blood work, we were quickly referred to a paediatric rheumatologist. They first suspected Lyme disease, then lupus, mentioned fibromyalgia...  What we did not know is that she had experienced her first flare.
We ended up seeing a rheumatologist in Kingston on a regular basis. Two years later, after many visits, blood work on various occasions, and a MRI, the diagnosis of Juvenile Idiopathic Arthritis (JIA) with Ankylosing Spondylitis (AS) was confirmed. It's not easy when you're 15 to see your dreams shatter. It hurts when you're 15 and you just got a diagnosis and you're crying, to see your so called friends dismiss you and think you are just trying to get attention. It's hard when you're 15 to be made fun of because all your joints are swollen and you can't move like others. It's hard to be 15 with a disease you can't forget because it hurts constantly. It consumes you, you become angry and you can't think clearly. And yes, you make mistakes.
After the process of elimination going through a course of Naproxen, then Celebrex which both did nothing, we moved on to biologics drugs with etanercept. This was not a decision we took lightly, as the risks and side effects can be quite scary.
My brave girl learned to self inject (that took courage) and did so for 8 months, with no results and inflammation creeping up into every single joint of her body.
The specialist came to the conclusion, after another MRI that the medication had done nothing to keep the inflammation at bay, and that in fact we were losing ground...
Today, my brave girl started IV infusions of infliximab. Those 2 to 3 hour long sessions are to take place every couple weeks initially, to hopefully end up at 8 weeks intervals, for as long as we can think...
We put a lot of hopes in this treatment. I want to see my girl shine and able to be herself. I wish to see this disease and the deterioration of her body kept at bay so her dreams may come true. So she can keep playing guitar, drawing, and doing the amazing things she has in mind for the future.

Tuesday, August 29, 2017

Losing Your Authority

While my thirties and early forties were all about creating a family, I always had the distinct feeling those happy moments would be replaced by less happy ones further on. I was anticipating my fifties would surely be marked by the loss of my parents. It happened before, sadly.

Dad passed away 2 years ago, weeks after the transplants ordeal was over. I felt I had been hit by an eighteen wheeler, miraculously surviving, to finally be able to get up and stand on my feet to be hit a second time around, in complete dizzyness. Some days, it still feels like I am trying to pick myself up.

Dad and I sure have our history of disagreements and tumult. You can't undo the past, I found it the hard way. You can't unsay what you've said, you can't unhear what was said to you. However, I can always find comfort in the fact that the apple did not fall far from the tree. Two very opinionated people, one standing on the right, one standing on the left, you can only expect clashing to happen. As dementia took a hold of him, it became boring as him and I would not even argue over politics anymore. He just lost interest in everything.  Dementia stole my dad away from me. But it never took away his love for me. As he became more and more affected by the illness, I saw this vulnerable man replace the man I used to fear. The man whose phone calls at supper time (to dictate me how to raise his grandchildren he loved so much...!) I would avoid with exasperation as I was busy with so much happening. I met a new person in his last years of life. I met a man who would develop unconditional love for his adopted grandchildren. It was never a concern with my biological children. But dad took me by surprise, letting his guards and prejudice down to see the beauty of children in need.

I miss his phone calls. I miss hearing him telling me how proud he was of me, how I reminded him of his own mother. I used to dismiss him and roll my eyes in silence. All that is left are the memories now. Our last phone call was two days before his passing. Binh was still in hospital receiving blood transfusions, while he was as well receiving transfusions 9 hours away. I told him she was fine, and I know he understood. I assured him I would always be there for his grandkids, and I know it comforted him. I told him I loved him, and he returned the same to me. And I knew this was our last conversation.

My mother survived him and is now by herself, fighting the demons of dementia as well. I feel horrible living far away. I feel guilty not being there more for her. I feel caught between my duty as a mom and my duty as a daughter. We talk every single day. The conversation always goes the same way. But somehow, it seems new to her. I keep things simple. Because it is the way it has to be. I have no immediate family anymore. No one who saw me growing up I can talk to about the real things. About my worries. About my accomplishments. About childhood memories, good and not so good.

I have no one to fear anymore. I lost all my figures of authority.

Saturday, August 19, 2017

Twins for Hope - June 2017 Mission (Part 2)

Following the visit to the leper colony, Mai and I made our way to Pleiku airport to catch a plane to Da Nang, a flight of a duration of about 1 hour.
With a population of 1,4 million, Da Nang is a coastal city in central Vietnam known for its sandy beaches and history as a French colonial port. The local population is very proud of the infrastructure of the city. 

It is always a pleasure to go back to my favorite hotel, the Sofia Boutique Hotel. Clean and affordable, this establishment is renowned for the friendliness of its staff who is always making everything they can to make you feel at home. My friend Vivian, who is the manager, is a strong collaborator of mine and is my way in to go visit people in the community and in the local hospitals.

After securing a motorbike for the duration of our stay, we went to purchase notebooks, pencils and milk to bring over to 20 children in a local hospital cancer ward, along with toothpaste, toothbrushes and pain medication brought over from Canada.

It took a bit of effort and negotiation to have access to the cancer ward... and once we got there, we realized there were only 7 children left: some had been discharged, while others sadly did not make it. The children who are still there were happy to receive their little care package.

Mai and I left the hospital feeling somewhat defeated: having the best intentions in the world is not enough. It takes a lot of guts and persuasion to do what we do. You need to believe in what you do to find the strength to cross the roadblocks that constantly seem to be in your way.

The next day saw us making our way to the Red Cross Vocational centre where we purchased our incense sticks last December. We placed an order for 50 kg of rice to be delivered on site and got there at the same time as the delivery guy. We sat with the director of the centre and his assistant and went over what Twins for Hope does and how we have been operating. The director gave us a tour of the facilities and was interested by our plans of bringing over Canadian professionals from different fields. Véronique (chair of the Board) and myself also have the intention of providing information on fertility awareness to the various centres we support, and Red Cross Danang showed interest in our project. 

Sixty youth with disabilities stay at the centre where they learn to make embroidery, purses, incense, silk flowers and printing. Twins for Hope will import in Canada some of their beautiful purses to sell for fundraising purposes.
After an uplifting visit of the Red Cross Vocational Centre in Da Nang we made our way back to HCMC on June 30 by plane.

With only a few days left until my return back to Canada, Mai and I got very busy meeting with partners who share the same goals. It's always nice to share experience and benefit from each other. 

One of the centres we support employs youngsters with disabilities. They sew different kind of products including canvas bags of all shapes. A way for us to fundraise and generate money is to sell bags to suit the needs of business in Canada. A Kingston local bakery ordered from us reusable baguette bags and we have several more orders being processed as we speak. We take great pride in ensuring our clients are satisfied with a quality handmade product delivered by people who otherwise would have nowhere to go if it wasn't from this centre.

We purchased more pop up greeting cards as they have been very successful and we anticipate a big demand with the Holiday season approaching.

While in Saigon, we also paid a visit to our good old friend Papa at Ca May Man and brought over provisions of food and other necessities. For those of you who are new, Papa is a Japanese man who lives in Saigon. He has taken under his wings youngsters who suffer from various disabilities and he teaches them how to work, while providing them with 3 meals a day and a safe place to sleep. They make paper mâché Lucky Fish and used to mainly ship them out to Japan to be sold in pagodas. For technical reasons with exportation, it has been increasingly difficult for them to fulfill orders to be shipped abroad. Papa's mission truly touches me. There is something about this man that just makes you feel like helping them out is the right thing to do. We purchased 1000 Lucky Fish from them in December 2016 and we still have a few hundreds to sell. Of course, all profits go back to help our people in Vietnam.

Our last work day in Saigon saw us visit a new centre, the Gia Dinh School where 80 children with Down Syndrome and autism go every morning to learn the basics to function in daily life. Partly funded by the adjacent catholic parish, the school however functions at a deficit and needs support. We had a good conversation with the assistant director who asked if we could provide help in acquiring a PA system and craft supplies. The children learn how to make crafts the school can sell to fundraise. Twins for Hope is planning on purchasing various goods we will offer in the near future.


I came back on July 4th, via Seoul. This mission was very productive and both Mai and myself feel we made giant steps in securing our relationships with our centres and our partners in Vietnam.

We have launched a gofundme Back to School campaign until mid-September. Our goal is $3000 which we intend to split between 3 centres to provide school supplies and pay for tuition for children reaching higher levels.

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