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Welcome back to my very Personal Page.
For the third consecutive year I have decided to participate to the Enbridge Ride to Conquer Cancer benefiting the Segal Cancer Centre at the Jewish General Hospital in Montreal. As you may know, this challenge is a 230 km, 2-day long cycling journey through Quebec's countryside that I'm embarking on to fight cancer. As in past years it will be a challenge in a number of ways, but with my bike, my helmet, my legs, my courage and your generosity, a real impact will be made.
Here is a short - updated (for past readers) story explaining why I decided to participate to this event.
Our daughter Quynh-Lan – she likes to be called Quinny – was born in July 2007. Her life started with a slight lazy left eye a few months after birth. It was not a pseudostrabismus that could be mistakenly diagnosed because of Asian's narrow folds covering the inner corners of our eyes. Not, it was a real noticeable one. As concerned parents, my wife and I brought this up to her pediatrician in fall 2007 in order to have it checked and eventually to get a referral to see an ophthalmologist. For a few months, the pediatrician was reluctant to grant our wish because in her views Quinny's lazy eye would improve with time. Her strabismus actually worsened but the ped did not change her mind over the next checkups, so, towards the end of November 2007, and with our insistence, she finally gave in, although she basically told us that we were wasting our time. I contacted the hospital to book an appointment with an ophthalmologist and was told that there was a 1 year waiting time, which we were okay with because it was only a strabismus according to the pediatrician, right? so we were not too worried. 1 year, more or less, why not, this is not a big deal. In early December 2007, I received a call from the hospital, someone had canceled their appointment and we were pushed to a January visit (January 8, 2008 - there are some dates you can't forget). She was immediately diagnosed with bilateral retinoblstoma (Rb). This is when her battle against cancer began.
Rb is the most frequent form of eye cancer in children. It occurs in approximately 1 in 15,000 births in developed countries. Bilateral Rb means that both eyes have tumors, while in unilateral cases, "only" one eye is affected. In unilateral Rb, depending on the tumor progression, doctors try to salvage the eye. In the best case scenarios, it can be and the child can lead a normal life. In most cases we've encountered, the child's affected eye was enucleated (removed) and the child ended up having monocular vision, which includes peripheral vision loss (about 20%) and impairment in judging distance (depth perception). With bilateral Rb, doctors try to rescue at least one eye. The decision to enucleate either one of the eyes (or both) depends on the treatment outcome, tumor progression and control. If only a single eye is removed, the child will have a monocular vision with a visual acuity which depends on the severity of the damages that the tumors created on each anatomical part of the remaining eye. If none of the eyes can be saved, they are both removed and the child will be blind.
Because of the size and location of her very aggressive tumors on both of her retina, she got an MRI, had a portacath installed and started chemotherapy within 2 days. The doctors actually told us that had she come even one month later the tumors could have had metastasized because some tumors were 1-2 mm away from the optic nerves. To make it short, from January 2008 to April 2011, she underwent systemic chemotherapy, focal therapy (laser treatment, cryotherapy), received 55 sessions of stereotactic radiation therapy. Her left eye was enucleated along the way (March 2009) because the tumors were out of control. The day of her surgery is still in my head as one of the two worst moments in my life as a parent (the first being January 8), seeing her cry as the nurse was carrying her to go to the O.R, her not knowing why she was taken away from us, me knowing that a part of her, of me, of us was going to be removed. Now she wears a prosthetic eye and I challenge anyone who hasn't read this story to guess which of her eyes is the fake one. Oh, except when the prosthesis moves, at times, it is not centered anymore, it shifts upwards and I have to say: "Quinny, fix your eye; Quinny, replace ton oeil", which sounds weird I must say. Just yesterday I told her again “replace ton oeil” and as a joke she replied “why do you want me to replace my eye when it is a fake one already?”…I fear that she will be made fun of at school or later in life if she doesn't realizes it. We're working on it too. But now she is old enough and as she asked me back in Jan 2016 why she always had to put her eye back in place, I had a chance to explain that it is important for her to pay attention so she doesn’t look (too) different from any other kid and is not being made fun of. It's not a big deal right now since all the school is aware and all her friends and school staff take care of her, making sure she is safe when walking around or having phys ed, for example. But later in life it could be another story.
This brings us to April-May 2011. Despite all these treatments, the tumors in her remaining eye were still not controlled and doctors ran out of options. Doctors were worried and we were, well, how can I describe it, beyond worried, scared, there no real word to describe the feeling. With the Quebec Health Care system approval they decided to give it a shot by sending us to Sick Kids Hospital in Toronto where the ophthalmologists led by world renowned Dr. Brenda Gallie and her colleagues (Dr. Elizabeth Chan, Dr. Elise Heon, to mention just a few) were conducting experimental off-label periocular injections of Topotecan for intraocular retinoblastoma. It sounds technical but, heh, if it works, why not. Needless to say that we were ready to do anything, I even remember contacting some US hospitals which were also conducting clinical trials in pediatrics for retinoblastoma. Anyways, from May 2011 we started a regular Montreal-Toronto-Montreal family trip, first by train, then by car, every three weeks with Quinny and her older – healthy – sister. We started with zero hope, no expectation whatsoever, after our first meeting with the medical team in TO. After a total of 2 or 3 injections 3 weeks apart, and a pretty overall good safety profile, i.e. minor nausea (due to the docs "playing" with her orbit; but no side effect per se due to the anticancer drug tested – anecdotally she still remembers vomiting in the cab which was taking us to the train station after our first visit), the results were beyond our wildest dreams. And after regular follow-ups every month then extended to 2 months as her condition was found more stable each time, in July 2014 Dr. Heon finally told us with a smile after her EUA "why are you still coming to Toronto when she can be followed up in Montreal now?". There are no words to describe the sense of relief at this moment. And this time, Quinny could wake up from her anesthesia all grumpy and screaming because she did not like the i.v. in her arm or because she was hungry and thirsty and it was already way past her lunch time and she had been fasting since 8pm the evening before, or because her hospital bracelet ID was put on the wrong ankle, or...no, it really didn't matter. Thank you doctors, nurses, social workers, volunteers, all of you who made it happen. We owe you.
Today she is considered legally blind and faces daily challenges. Her vision, yet limited (tunnel vision, with blind spots in the centre of the retina and in the periphery) allows her to be in a "regular" school setting. She can benefit from the support of a wonderful school staff as well as all the visual aids, CCTV for home which allows her to do her homework while adjusting the zoom level and contrasts to her visual comfort, ZoomText software installed on our laptop so she can type, browse, play with ease, portable CCTV and Ipad Pro at school so she can take notes and follow the regular program, dedicated magnifier, head lamps, walking cane, mobility and orientation specialist, itinerant teacher, to name a few. She amazes me each day, I am so proud of what she has accomplished. She may be difficult at times as one would expect from a 9 yo kid who went through a lot, but it doesn't matter because she is with us.
Next July 2017 she will turn10, meaning that it will be 6 years since she received her last treatment (cross my fingers). I'm not sure how this translates with regards to "remission" though there seems to be a general consensus that being cancer-free for 5 years puts you in this category. For pediatric patients things might look different since they are at a stage where cells grow fast (and unfortunately wild). With regards to Rb, some patients are even newly diagnosed in adulthood; some also relapsed beyond these 5 years. So, true remission or not, this is an ongoing battle with its never lasting uncertainties. The good news is that her checkups are now scheduled wvery 6 months, meaning that over the years she went from every week to every month, then every 2 months, 4 months and now 6 months between checkups. While Quinny’s story is on the right track, other kids did not have the same chance. One of her friends had to be enucleated a few months ago. Since he already had a prosthetic eye, it means that he is now blind. He is showing great spirit.
For him, for Quinny, for all those kids who are suffering from Rb or any other type of cancer, I’m hoping that your generosity will help me participate to this event as a unique iopportunity to give back to the community for what they gave Quynh-Lan, gave us, to thank everyone who was involved, here in Montreal, there in Toronto, at all levels, to allow them to lead a better life. It doesn't really matter which organization will use your donations as long as I know that at the end of the road, cancer research and the patients will be the ultimate beneficiaries.
On a side note, so don’t forget that your donation is tax-deductible...
If 50 people give each $50 then I would have reached my goal. In the past two years I managed to fundraise the minimum amount in less than 2 weeks. This year I am still counting on all of you to make it happen
Thank you in advance for your help.
Duc, proud father of Quynh-Lan
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