12 December 2007, 00:40

On November 1st, while he was sleeping, Vincent chocked on some mucus in his throat, which made him vomit, and he ended up aspirating. A week late, he started bringing up mucus from his lungs, and this soon deteriorated into a pneumonia. At first, the main issue was that the mucus coming from his lungs prevented Vincent from swallowing properly. He therefore started to lose weight and energy. We finally decided to insert a naso-gastric tube so that we could force feed him, to help him gain some weight and have enough energy to fight the pneumonia. Althought the feedings did help with his weight, Vincent kept on getting weaker and weaker. It became too much. Way too much. Even for Vincent who fought and defyied his illness with such strenght and determination. Vincent left us, like a flame running out of air. He was at home, surrounded by love and by his parents, he didn't suffer, he was peaceful. He just left his body that had become a prison for the past 9 months, and regained his liberty.

If you would like to say a last farewell to Vincent and meet with the family, you will have the opportunity this Sunday December 16th 2007, from 2:00PM to 5:00PM and from 7:00PM to10:00PM at

Centre funéraire Côte-des-Neiges

Réseau Dignité

4525, chemin de la Côte-des-Neiges

Montréal 514 342-8000

The funeral service will be held on Monday December 17th 2007 at 10:00AM at St-Germain d'Outremont church, 28 Avenue Vincent d'Indy, Outremont, Montréal. In lieu of flowers, donations to Leucan would be appreciated.

We will be happy to see you and share with you our grief. We want to thank everyone that has sent cards or parcels to Vincent. We cannot say enough how each note sent to him made him happy and feel special. Special thanks to all the people who helped organise special events, such as visits from police forces, meetings with his favorite artistes, magic show, etc... Thank you a thousand times.

News at last.

I am sorry I did not find time to write sooner. We are obviously very busy, and I try to keep the french site up to date, which is already a challenge. I am afraid the english site has been suffering from our lack of time. If you can find a site that translates, the best way to get all the news is by following the french site, really.

A lot has happened since I last wrote. It seems that Vincent has decided to challenge all the doctors' predictions. He has decided to challenge all the laws that govern his disease. He has actually started to get better. The palliative care doctor cannot explain it, but he has told us that there is definitively something happening that is not according to what was expected.

Since July, Vincent has regained a lot of his strength, tonus and energy. He now spends the days with us, pain free, without medication, except for the decadron. He can walk around the house with assistance from us, since his balance has not returned, and uses a wheelchair for longer rides. He comes with the family on outings (at the train museum on the picture), he plays board games, watches tv, listens to music, and has recently started to read again and go on the computer a bit. Some of the feeling in his face has come back, and some of the neurological symptoms that he had are gone. Vincent has started, 2 weeks ago, a readaptation program with physiotherapy and organisational therapy. He has gone horseback ridding, with assistance of course, once a week for the past 2 months. Of course, to know exactly what is happening with his disease, we would have to go back to the hospital for MRI's and other tests, which we are not willing to do at this point.

Vincent is still very sick, with a lot of disabilities. However, his state is no longer declining, but on the contrary, he is getting better. He is a very strong, and brave young man who has earned our admiration. He has, as you can imagine, days where he is down and depressed. Other days, he is full of energy, optimism and projects. To keep his spirits up, we have asked people to send him a little something through the mail. It can be a postcard, a card, children's drawing, anything really that will make it to our mailbox and bring pleasure to Vincent when he opens it. A lot of people have responded to our request, some people we don't even know. All the mail that we receive, we hang on Vincent's bedroom walls. It is absolutely wonderful to see and brings energy to anyone entering the room. Every second that he lies in bed, Vincent can see how many people are praying for him, and sending positive energy to him... Mailtime is something to look foreward to. It is something that does exactly what it was intended to do: bring joy and sunshine into Vincent's heart.

I will leave you with our home address and Vincent's personnal e-mail. Please keep praying for him, sending the wonderful positive energy towards him. It all makes a difference, as Vincent is showing us. Thank you.

Vincent Aumais

51 rue des Tilleuls

St-Jean-sur-Richelieu, Québec, Canada

J2W 1B4

e-mail: Vincentaumais@yahoo.ca (don't forget the capital "V")

There is no easy way to say this

Since there is no good way to give bad news, we'll just say it.

On June 18th, we had to go to the ER with Vincent because of head pains. Ended up that Vincent had developped hydrocephalus. They did an emergency surgery to put a shunt in. The following day, the doctors met us to tell us that, on the scan they took for the surgery, they could see that the tumor had grown despite the radiotherapy, ie it was resistant to treatment. They also told us that their pathologist had reviewed the biopsy from the first surgery( which was done at another pediatric hospital in Montreal) and had changed the classification of the tumor to a grade 4, the most aggressive type. They told us that there is nothing more that they could do for Vincent and transferred him to hospice care (palliative care). So Vincent is now at home with us, and slowly deteriorating. We have decided to stop radiotherapy since, if it did anything, it would only prolong the decline.

For the first few weeks after the surgery for the shunt, he did't get out of bed, sleept most of the time, and practically didn't eat. We are now trying to keep the most serene atmosphere around him. The past few days have been good, he has been able to get out of bed, eat more, go outside to enjoy the sun and spend time with us. There is no way to know what is ahead, so we now live in the "here and now", enjoying every few bits of happiness possible with him. Please do keep praying for him.

Halfway in the treatments

Today was the 16th radiotherapy treatment. Vincent has regressed a lot since the beginning of the treatments. On the 3rd day, he injured his ankle, which prevented him from walking. Since, we took Vincent to see an osteopath who quickly took care of the injury, however, Vincent's balance never came back. He therefore must move around in a wheelchair, or with mum or dad to help him with his balance.

His neurological symptoms have also gotten worse. They are: paralysis and numbness of the left side of the face, left eye crooked, left eyelid cannot close, left ear not working, numbness of right side of body, trembling, balance and coordination affected moderately.

Vincent's moral is good. He is very positive, although his situation has done nothing but get worse. He is now more stable, and some of the trembling has receeded. The worse part for him has been the lack of sleep due to the Decadron, a steroid medication that he needs to take to keep the swelling of his brain under control. We are now in the very slow process of weening him off the Decadron, and hopefully, he will soon be able to function without it.

This is a very tough and serious illness that Vincent is going through. He is being VERY brave and has shown great strength of character. He is quite a fighter, but still needs encouragements. We ask you to please leave notes or commentaries, just a small hello or a funny anecdote from your day. We spend time everyday to read the commentaries, and it bring a bit of sunshine to his heart. His radiotherapy treatments are everyday of the week between 11:15 and 11:45AM, Montreal time. Please, set your watch or cell phone alarm for that time, and take a few minutes to send Vincent good thoughts, to help him get through this. It never stops to impress him how many people think about him, and it give him a lot of strength.

Thank you so much for taking a few minutes of your day for Vincent.

Vincent's story

At the beginning of March, Vincent noticed that his left eye would not close normally. Nothing to worry, really, since he had caught a tennis ball in his eye a few days before.

On March 4th, at the end of the day, Mom noticed that Vincent's mouth was crooked... weird..

On March 5th, the family leaves for the spring break: one week of skiing at "Le Valinouët", a ski resort near Chicoutimi, in the Saguenay region of Québec. On the way, while listening to his brother's i-Pod, Vincent realises that he cannot hear from his left ear... weird...

In Chicoutimi, Vincent has a go at snowboarding and exhausts himself. He spends the afternoon sleeping. His face slowly becomes more assymetrical. This is getting more and more worrying. We decide to look for a solution: off to the emergency room at the Chicoutimi hospital. Diagnosis: Bell's palsy, a benign problem that should resolve withing 1 month. Phew! It's not that bad. We'll have to follow up at Ste-Justine's hospital in Montreal when we come back from vacation.

The week following our return, Vincent and Mom spend a day at the ENT at Ste-Justine. The doctor doesn't like what he sees. Bell's palsy should not affect the ear. We go through hearing tests, a CT scan. At the end of the day, a new doctor walks in the examining room: an oncologist.

The oncologist talks of a tumor on the brain stem, MRI's, medicines... Cranial nerves V, VI, VII and VIII are affected.

Following the MRI, we meet a neuro-surgeon from Ste-Justine. He explains that, as opposed to the majority of brain stem tumors, Vincent's tumor can be operated on. (Good news??) It is therefore possible to get a piece of it for analysis. After thinking about it, we decide to go ahead with the operation.

Vincent is immediately put on Decadron, steroïdes with horrible side effects: loss of sleep, increased appetite, heartburn, swelling of face, joint pains, slowed wound healing,... and the list goes on and on...

The surgery is scheduled for April 5th 2007. However, Ste-Justine has administrative problems, and there are not enough nurses at the Intensive Care Unit to take care of Vincent after the operation. It is therefore delayed for one week.

On the morning of the operation, after an agonising wait, the neuro-surgeon who is late by 30 mins, comes to tell us that there is only 1 space available at the ICU , and Vincent will get it. So after a final MRI, the surgery will take place.

Therefore, on April 12th 2007, at 10:00AM, after hearbreaking goodbyes, Vincent leaves for the OR. Immediately after getting in the room, the anasthetist puts Vincent to sleep with gas. For the following 2 hours, nurses, technicians and OR personnel work to position Vincent for the operation. He will need to be lying on his stomach with his head tilted forward. Since the procedure is taking most of the day, Vincent has to be positionned properly to avoid causing any him any injuries. For the surgery, he will be intubated, have a urinary catheter, venal acceses, artherial pressure monitoring, electrodes for heart monitoring, and the back of his head will be shaved off completely. Dr Mercier, the neuro-surgeon, starts to operate at 12:00hre.

The longest day ... Judith, who has come for moral support, Mom and Dad wait. By 5:30PM, Dad goes to get some news. The doctor has started to close up, there is about 90mins left to the procedure.

As predicted, the doctor comes to get us at 7:00PM. Vincent is fine. He is now extubated, has opened his eyes. Everything went well. The doctor has managed to take out aboug 50% of the tumor. Preliminary report: Pilomyxoid astrocytoma. To be confirmed by the pathologist with more tests.

What a relief! Vincent is transferred to the ICU. Only Mom and Dad can see him. He is awake! He has trouble speaking, his mouth all pasty from the anasthetic gas. A true soldier!!! Doesn't complain. Mom pulls a chair, and starts a night of recovery. Vincent wakes up every now and then, Mom is close by, monitoring everything, making sure all is normal... if it's the only reason that Mom got her nursing degree, it was well worth the efforts...

Vincent impresses everyone in the ICU. The following morning, he starts to drink. Tubes are slowly coming out. There is no way he is going to urinate in that bottle...Off to the toilet he decides to go! And that's enough to convince everyone that, after 12 hres in the ICU (instead of the predicted 48hres) Vincent can move to his 5th floor private hospital room.

Again, Vincent impresses all the nurses. He is so strong, such determination, what a quick recovery. He is our best yet!!! Vincent is beaming with pride! After a week of recovery in the hospital, Vincent leaves to go home. Hurray! the whole family is reunited. Everyone is happy to be together, not to mention Vincent who will finally sleep in his own bed!!!

Starts the recovery periode at home. The neurological symptoms are not improving, even though Vincent is doing quite well. Two weeks after surgery, we meet with the neuro-surgeon. The same diagnosis: Pilomyxoid astrocytoma, an atypical benign tumor that has an unpredictable behavior. Regardless, its localtion stays a problem. Radiotherapy is recommended to shrink it as much as possible.

Options, which are few, are considered. Radiotherapy is very risky, with potential horrible side effects. However, the risks from tumor growth are worse. One month after the operation, a new MRI is done: the tumor has grown. We have no choice: radiotherapy starts on Wednesday 16th May 2007. There will be 30 sessions in all.