Welcome to the Bruyère Family Webpage!

This page is intended to give everyone information on the Bruyère Family ...

Medical Story

Family Letters

Wisdom Words

Recent Photos

Tributes

GUESTBOOK for comments, suggestions and good wishes.

You can also contact Gaby and Chris directly at bruyerefamily@rogers.com or myself at katherine.sahapoglu@rogers.com

UPDATES

June 16, 2000  -   Montreal Memorial Mass, Good Shepherd Church, Brossard
Another touching and beautiful celebration with many many (250?) family and friends. Father Bradley McGovern guided through the mass, with again a wonderful singer and organist. Caroline was baptised in this church, and we often returned there during our visits back "home". The tributes to Chris following the mass had a slightly different flair, with more childhood and adolescent memories coming to the surface. The reception in my parents' garden allowed many of us to catch up... it was really nice to see once again how many people Chris touched in his lifetime! Thanks to everyone who participated.

June 9, 2000  -  Toronto Memorial Mass, St-Gabriel's Church
Thank you to all (400?!) of you who came today to celebrate Chris' life, to offer your sympathies and to pray to God he is now at peace in the light. Father Paul Cusack did a beautiful mass and sermon, Marilyn Carderona's voice filled our hearts with songs, accompanied by D'Arcy Atkins at the organ. The children participated by bringing the gifts of communion to the altar. Caroline shared a short prayer she wrote and I recited our family prayer. When mass was over, we all stayed in the church for a time of reflection: Marc read a short letter he wrote to Chris and God and then we heard 18 tributes to Chris from family and friends. Each one helped us remember one or two incidents in Chris' life and reminded us of the many gifts he left us. Although it was raining this morning, the sun did come out in the afternoon and about 150 dropped by our house afterwards to talk casually in the garden. And yes, it was all videotaped for the children (and for any of you far away who would like to see it). A perfect, colorful, loving goodbye.

June 6, 2000  -  See letter sent to family and friends under Family Letters including information on the Memorial Services, Tributes to Chris and Donations.

June 4, 2000 @ 5:30PM -  Chris walked into God's hands. May he rest in peace.
After an absolutely wonderful day yesterday, Chris and I fell asleep together at the hospital. We talked about how fortunate Chris felt to have had a chance to say goodbye and thank you to close family and friends. We were both exhausted... Today was Caroline's ballet recital: I could not miss it, but felt bad about leaving Chris. Well, synchronicity was at work: her dance was  #17 (she was so cute!) out of 48 and there was an intermission scheduled halfway... I followed my intuition and went back to the hospital - Chris' mom, my dad, and cousin Philippe also joined me (Chris' dad had stayed with him while we were gone). After about an hour of us talking in the room (and yes, I believe Chris could hear us in his sleep), I noticed his lips were getting paler and paler, and realized he was no longer breathing. Chris fell asleep last night around 10PM and never woke up.

My first thoughts were "I'm glad. He went peacefully, surrounded by love. He is not suffering any more." My second thought was "I have to tell the children myself, in person".  I must have done something right because as much as it was hard for them yesterday, they were ready to hear it today. It will not be easy, but time will heal the emptiness inside. We will help each other stay strong. We'll miss you daddy. WE LOVE YOU.

Tomorrow, I will post information about the memorial services: one in Toronto, one in Montreal, and then his ashes will be given to the ocean in Bonita Beach, Florida. Chris wanted the gatherings to be a celebration of his life, so I would like to invite you to write a short "Tribute to Chris" to be shared with family and friends at the services.

June 3, 2000 -  This morning Chris had his second near death experience (his first one was during the strange side effects of the chemo a few weeks ago). Chris said he saw God and He told him He was ready for him. For a few hours, Chris' parents (Rita & Yves) and I really thought that was it... so I asked my sister to bring the children right away: it was a very very difficult "goodbye daddy, I love you" - but I am convinced that this token "closure" will give them strength and courage later in life. In the afternoon, Chris felt better and asked to see a few close friends - a few more emotional goodbyes. My dad then arrived from Montreal and came to see Chris right away. Both Chris and I are very much at peace with his passing from this world onto the next since we have had two full years to prepare... we understand that it is often more difficult for others. Tonight, I will sleep at the hospital, next to my PIL (partner in life).

June 2, 2000 -  Increased the pain medication again and Chris slept most of the day. A few short visits exhausted Chris very quickly. Both Marc and Caroline came to visit in the evening and brought daddy a drawing and a poem: it was a very nice visit. Kjell-Eivind (my sister's boyfriend) arrived from Sweden for a week (a very hectic one I am sure!). My mom, who was in town all week, will be staying at the hospital overnight.

June 1, 2000 -   We are increasing the pain medication so that Chris may be comfortable for most hours during the day. Father Paul from our parish came to give Chris a blessing and his last rites (Chris asked for it). How can I describe it? Chris feels trapped in a slowly deteriorating body: with no major organ affected at this time, no one can tell us how long... He is speaking in terms of wanting to come home one hour (with a hospital bed in the living room? with nursing staff around the clock $$, physiotherapy for the legs, etc.) and then the next hour he wants to let go because he put up a good fight for two years and enough is enough. We have traffic coming into the room about every hour: doctors, nurses, cleaning support staff, palliative care team, social worker, meal delivery (cereal and milk), nutritionist, physiotherapist (to move Chris from the bed to the reclliner chair with a lift), clergy, even a singer... and I must say that I am a little surprised that EVERYONE from the hospital believes Chris' time will be soon. The truth is, we really don't know and we are trying to make the best of every day we have together. We are still keeping visits to a minimum and unfortunately, I find myself saying no to many of you... I'm sorry. We'll see how he feels tomorrow...

May 31, 2000 -   Sorry... I'm really exhausted and drained tonight... will update tomorrow (as per Kathy's instructions - she said this would show that I am normal after all).

May 30, 2000 -   It felt like a roller coaster ride today... Chris had a very tough morning with discomfort - he just HAD to get out from the bed after several days, but going in and out of bed is REALLY hard: it takes three strong people (and I'm the just the cheerleader). Then, he was talking of giving up, of letting go - somehow, not sure how...  After an emotional visit with a friend from the past, he still couldn't get comfortable in bed and took pain medication (a lower dose this time) and slept for 15 minutes. It was a deep sleep and when he woke up, he was much more lucid and optimistic: he talked about physiotherapy, rehabilitation, an electric wheelchair, and nurses at home... to the point that I was at a loss of words: if all those people who are paralyzed from the waste down can have semi-normal lives, then why can't I? But reality kicked in again with many many cancer cells, limited treatment options and a quickly deteriorating body. My success story for the day is that I convinced Chris (I think, we'll see tomorrow) that we need to take this journey one day at a time, that he IS and that he CAN STILL make a difference in people's lives over the days and weeks ahead.

May 29, 2000 -   Last night, the nurses decided to give Chris a couple of pills to help him sleep - bad idea: he never did react well to those drugs, and less so now... he woke up this morning quite disoriented and restless. I was not a happy camper this morning. By mid-afternoon, he was better - until he took a new pain medication (instead of morphine): he went into a very deep sleep for three hours. We are quickly learning that new medications require an adjustment period.  Chris' dad was able to be in Toronto for a few days and is spending precious hours at the hospital. My mom arrived from Montreal today with some holy waters and oils collected by Yani and Eleni during their recent trip to Israel and the Jordan River (where Jesus was baptized), and by Father Andreas who recently visited St-Efraim's monastery in Athens, Greece. Chris also received a long distance blessing from Don, Miriam and Maria with holy water from Lourdes. We said a prayer all together and then Chris slowly recited our own family prayer. Yes, we are still hoping for a miracle.

Many of you are asking me how I can be so strong through all this... The quick answer is that when you need to be strong, you just are. But the truth is that I am not alone. First, my sister Kathy is doing everything that needs to be done so I can focus on my only two priorities: Chris and the children. Second, Chris' mom Rita is at the hospital early morning and all evening - every day, which allows me to keep sane (I am not an early bird and I cannot make myself be!) and to spend much needed time with Marc and Caroline (especially for our "bedtime questions"). Third, I have many many families here in Toronto who have hosted my kids for play dates or sleepovers. And fourth, the constant flow of love and support through the web is phenomenal and uplifting. I know I am well surrounded, I know I am very lucky, and I truly appreciate it. Thank you!

May 27/28, 2000 -  Chris received two units of blood last night and, as a result, he was a little more alert today. Caroline came to visit again and commented on daddy's eyes: he is not the same as he was even one week ago. Chris is struggling between letting go and trying to continue to fight - maybe coming home or even trying to go to Florida one last time. The doctors and nurses are talking in terms of days... and although physically this may be logical, mentally I don't think he is ready yet. I leave it up to Chris, it's his decision and I will be there to support him either way. I have told him that it's OK to let go, that he did fight a good fight for two years, and that the children and I will be fine. On the other hand, if/when he does regain some strength, we can bring him home with a hospital bed, nurses, etc.  It's not about us any more, it's about him. I let go and let God.

May 26, 2000 -  A peaceful day. I spent most the morning reading to Chris, including all the wonderful emails and guestbook entries we have been receiving: we both thought how lucky we are to be surrounded by so much love at this time. We started watching Touched by an Angel together in the afternoons at 5pm and yesterday it was about a man who wanted to die peacefully at home, surrounded by his family. Very inspirational.  Medically, our focus is simply on pain management. One day at a time...

May 25, 2000 -  No real change today. Chris slept a lot and is hopefully regaining some strength.

May 24, 2000 -  A difficult day, both emotionally and physically. A big effort to eat a little bit, to take a shower, and to get back in bed... big chills for no reason, and a big question-mark at the end of it all: how much fight is there left? Tomorrow is another day. I hope it's not as tough. Today's higlight was a visit from André, a childhood friend from Candiac who now lives in Calgary - Chris amazed us with his memory, again: it's truly remarkable.

May 23, 2000 -  Still extremely weak, frighteningly so for both of us... Chris slept most of the day - on a new air mattress, made to be easier for the lower back and the bed soars. He started getting some pain medication on demand - very small doses of morphine. The highlight of the day was once again a very special visitor: Caroline came to see daddy, with huge smiles and hugs (she is the world's best hugger!). She also brought a tape from Villy and Nathalie who wrote a beautiful song on the piano for us: precious, thank you!

We talked to Dr. Bryson for a while, tossing around various options, and we will review the situation again with Dr. Moore tomorrow:
- Ask Chris to eat more: this one is really hard for Chris and the doctors are not pushing him because they understand that loss of appetite is a common issue with cancer... I, on the other hand, would prefer to present food as medicine at this point and appeal to the patient's logic - more food = more strength... I guess it's not that simple... We will see a dietician again tomorrow, with more specific questions this time;
- TPN (intravenous nutrition): this one needs special approvals and carries risks of complications, but it is not ruled out yet;
- Losec (to reduce heartburn and reflux): this will facilitate eating - he was on it at home;
- Neupogen (to boost his white blood cells the week after chemo): starting tomorrow;
- Water pills to decrease the water retention in the legs: we will work on resolving this problem tomorrow;
- The liver function has improved, but is not back to normal yet: they may schedule an ultra sound to see if we need to wiggle the tube a little.
Lots of food for thought here... maybe one of these will help Chris feel a little better.

May 22, 2000 -  A little more food, a little more sleep, but the highlight of the day was a very special visitor: Marc brought daddy a "double decker peanut butter, jam and banana sandwich" made by his own hands. Marc was very brave and he made a few smiles appear on daddy's face. It was not an easy visit, but so worth while!

May 21, 2000 -  Chris is extremely weak and, after a two year war with cancer, he is experiencing battle fatigue. Eating is a very big challenge right now: no appetite, no strength, and a system that was shut down for a few days...  I am not sure what else to write... Your notes and emails are very valuable as they offer encouragement to find the strength that is needed, even though it is burried deep down inside. I am reading them to Chris on a daily basis. Thank you for your continued support and positive energy.
May 20, 2000 -  Today is our 11th Wedding Anniversary and Chris gave me the most precious gift in our 18 years together: he woke up this morning and he is BACK: another miracle! He is very very weak, but that's OK... we will take it one day at a time and build up his strength with food and sleep. I brought four two-toned roses to Chris (many of you will recognize this symbol of our family from our wedding invitations and last year's party) and a laptop with our 10th anniversary CD-rom production of the past 10 years together. Beautiful memories. My success story for the day is that I convinced Chris to eat his soup - all of it - and then he asked me to go buy him red licorice?!

May 19, 2000 - Slept at the hospital again last night and it was another difficult day... although my faith was always strong, I must admit my stomach had a few butterflies inside. My newest concern is the fact that he hasn't had anything to eat or drink since Tuesday. The drug we tried yesterday did not work and the doctor said that all we can do is wait and pray. We will review our options after the long weekend. The one amazing thing is that Chris is off all medications and he is feeling no pain at all. Even the docs are surprised at that one. God is helping him through this.

May 18, 2000 -  No change. Very strange day.  I am grateful that Chris does recognize me.  We started a drug to help him come out of it... we are praying that it works tomorrow.

May 17, 2000 -  Chris was in and out of consciousness today, but the sedative effect of the chemo was a blessing in disguise because it helped him sleep most of the day. We reviewed the situation with Dr. Moore who said that this unusual reaction is probably due to the slow functioning of the liver. He suggested we stop the treatment at this point and let Chris sleep off all these side effects rather than giving him more drugs to eliminate them - which could bring about more complications. However, if his creatinin levels stay normal, they will try some pills for the water retention problem... it's pretty bad.  Chris' mom is staying with him tonight. We are keeping our fingers crossed that he will be back to normal by Friday and that the two rounds of chemo helped shrink the tumors a bit.  I have received many offers for help... sincere and heartfelt thanks, but I wouldn't even know where to start delegating at this point. My sister Kathy is my personal little angel right now and she is keeping things running smoothly at home. Really, just knowing that we are not alone on this journey is a big help. Merci.

May 16, 2000 -  A strange and scary reaction!
One of the uncommon reactions to Ifosfomide is mental confusion.  I didn't even list it as a possible side-effect two days ago because it was very unlikely.  Chris does not stop to amaze us though - he has an extremely rare cancer, so it's only fitting that he have an extremely rare reaction to a chemo drug. After the close call last week, this was another scare.  Since I cannot begin to understand everything he is going through and feeling, I will simply relay his own words here: "I'm floating.  I am in another existence.  Where am I?  Am I in a hospital?  I told God I wasn't ready to go yet: I have a lot more to do here with my family and my kids.  Am I losing it?"  Well, yes, but only temporarily.  On my way back to the hospital, I prayed for strength, courage, and peace in our hearts. I was granted those wishes, along with a comfortable mattress on the floor next to him and a good night's sleep for both of us. Somebody was listening!

May 16, 2000 -  Well .... it really is one good day and one bad day. Gaby spent the night at the hospital with Chris last night and she will probably write an update tomorrow. Chris had his second round of chemo today and depending on how he is feeling, he should get his third and last round later tomorrow. Thanks again for all your positive energy...

May 15, 2000 -  Finally, chemo did start today. It's a single agent chemotherapy this time, Ifosfosmide, taken with a few other drugs that will help the body tolerate it, such as mesna (a bladder protector), decadron and odanzetron (anti-nausea).  It takes about 45 minutes to infuse intraveneously, and this will be repeated tomorrow and the next day.  The intent is to repeat this protocol (3 days every 3 to 4 weeks) until it is no longer effective in reducing tumors. Chris tolerated it quite well, i.e. he slept quite a bit during and shortly thereafter. By late afternoon, he was pretty much back to normal.  The water retention in the lower part of the body is still a big problem and it will take a few weeks for the chemo to help out in this regard. Speaking of a few weeks, Chris will soon become a no hair wonder again - that's one of the common side effects of this chemo. We hope the other possible side effects will be avoided  as they were with previous chemos in the past (nausea, vomitting, mouth sores, constipation, loss of appetite). Although Chris should be considered "experienced" (this is his 4th chemo protocol in two years), his body is definitely weaker than it was and there are significantly more tumors to go after now than two years ago. Still, since he has been off chemo since last August, we are hopeful that it will shock the tumors and be successful in shrinking them.

In the mean time, we had tickets to Lion King this evening - Chris missed it, but he will definitely catch it at a later date. The costumes, decor, special effects, and music were truly extraordinary. Miles ahead of any other show we have seen over the years. Raffiki, Zazou, Timon, Pumba, and Skar were wonderfully funny. I was just a little disappointed with the acting/singing performance of the leads, Simba and Mufassa. But that's OK, I still recommend it 100%. The circle of life. Akuna Matata. The children also gave it two thumbs up, but they will surely pay the price tomorrow.

May 14, 2000 -  Happy Mother's Day to all the moms out there! We enjoyed another quiet day at the hospital. Chris did not start the chemo yet: another small delay due to low potassium levels in the blood. Easily corrected though with a few pills... and it should be a go tomorrow - am I starting to sound like a broken record yet?  Many of you have asked about visits to the hospital, and although we appreciate the offers, Chris would prefer to keep a low profile for the next few weeks. With the chemo starting, the risk of infection when his immune system is compromised is high and he will have enough of a battle trying not to catch anything from the children and I. We are keeping our spirits up, our thoughts positive, our hopes high, and our faith strong.

May 13, 2000 -  Quiet day in the hospital today... no surprises is great news these days! The biggest problem that remains is water retention. Chris gained 8.5 kilos since Monday, all in the lower body. So it's hard to walk, get in and out of bed, even sit for very long (he can sympathize with and understand how pregnant women might feel). The good news is that the liver is starting to clear up through the plastic tube in the bile duct: there is already a significant improvement in his skin color. He is back to eating regular food and all vital signs are stable - so chemo should proceed as planned tomorrow.  The children are with friends doing sleepovers, so I am enjoying quite a bit of quality time with Chris this weekend. We keep repeating to each other how fortunate we are to be blessed with such wonderful children, family and friends.

May 12, 2000 - Well, I will start with another THANK YOU! The many prayers coming our way must be working... The procedure took place at 11:30 AM this morning and it went very well. [Here is the medical stuff: they inserted a biliary drainage tube to correct a blockage in the bile duct of the liver. Bile is normally released into the bowels to aid in the absorption of dietary fat. The bile that is unable to get to the bowel starts building up in the blood and the skin appears yellow. A tube inserted into the liver allows the bile to flow through the tube into a external drainage bag. Later, the tube can be plugged to flow directly internally into the bowel.] We are learning so much on this journey - isn't the human body amazing? Afterwards, Chris was very drowsy for a few hours, but by the end of the afternoon, he felt quite good. We moved rooms again today, 4th bed in 5 days. We both felt very positive and we are now looking forward to chemo starting on Sunday.

May 11, 2000 - Another day of waiting... and another complication still. It seems that two doctors got their signals mixed up where one needed an MRI done and the other one did not...  anyway, nothing happened today (yes, we are a little frustrated about that!). The stenting procedure is now scheduled for tomorrow morning.  This afternoon, a few signs started pointing to another internal bleeding episode [Chris has had three in the past: one was solved with chemo, one needed to be catarized with an endoscopy, and one was solved with two units of blood.]  So he is getting two units of blood and we hope this will work (he is also back to "nothing by mouth"). It seems to be one thing after another, one more obstacle on the path... Tonight, both Marc and Caroline went to visit daddy at the hospital - that helped boost his spirits up. I am reading all the emails and guestbook entries to him daily - they help too! Thank you!!

May 10, 2000 - Last night, I slept at the hospital on a cot next to Chris. It was a very emotional evening. We had to watch for signs of fever every couple of hours... and felt a big relief in the morning when none came. No fever meant that we could proceed as planned. So we met the gastro experts in the morning, and scheduled another catscan in the afternoon to determine the feasibility of inserting a stent to remove the bile duct blockage around the liver (and help reduce the jaundice). The procedure will be done tomorrow using a needle through the abdomen (instead of an endoscopy through the mouth) at Toronto General Hospital. Chemo would then start on Friday... The water retention continues to be substantial, but the only solution for this is a reduction of the tumors via chemotherapy. In the mean time, Chris had not eaten anything by mouth all day, so he savoured his dinner, even though it was hospital food.

May 9, 2000 - Today we discovered a third complication... during an ultrasound scheduled to determine whether an endoscopy could safely be done, an air bubble was discovered on a portal vein near the liver. The implications of an air bubble are severe, very severe. .. this scared the doctors (and us!). There is a high risk of toxicity and the situation will be considered critical if Chris were to break into a fever overnight; if there is no fever, then we can assume that the body was able to heal itself. Antibiotics were started to help the healing process. The proposed endoscopy and chemo were therefore delayed as the doctors want to closely monitor this situation for 24 hours.  We will be praying all night - and thank all of you who are doing the same. God bless.

May 8, 2000 - Chris checked into the hospital today...
First, a port was installed in Chris' chest to allow for repeated easy access to the bloodstream (to give medications or to take blood) without the usual poking to find veins in the arms. It's a relatively minor procedure which took about 45 minutes, and which did not cause too much discomfort. Then, we "checked in"  Princess Margaret Hospital. We reviewed the May 4th catscan results with Dr. Moore and, as we had suspected, the disease has progressed significantly. Over the past 1-2 weeks, Chris started experiencing two new challenges: jaundiced skin and water retention in the ankles, knees, hips and sometimes up to the abdominal area. We assumed the jaundice was caused by tumours spreading to the liver, but this does not seem to be the case. It may be caused by a simple blockage around the liver... so instead of starting chemo right away, an endoscopy is scheduled for tomorrow. They may be able to remove the blockage with a simple procedure. More news tomorrow...

Did we say April was a busy month? Well, May had not come around yet! Just this weekend, Caroline had a little tea party for 14 of her friends and their favorite dolls (I thought it was worth every bit of sweat pulling it together; on the other hand, Kathy and Connie rediscovered the benefits of birth control with this party!), the kids both had their First Communion, followed by a celebratory brunch, and a big family  dinner for Caroline's 8th birthday. Thanks to Yaya, Papou from a distance, Kathy, Mami, Papi, Philippe, Stephanie and Bill for the wonderful memories. Exhausting, but priceless.

April 28, 2000 - Chris has been feeling a little better this week. He is still weak, with his blood work showing that the liver is being affected more each week, and walking must be kept to a short distance; much of his discomfort now comes from gas now that the pain management pills are under control (and nothing seems to help that one)... On the bright side, he is eating three regular meals a day, my massages help with the lower back, he accompanies me on errands, he started doing laundry again (thank you, thank you, thank you!!!) and he is present in our family activities.

April is a busy month for us, with my birthday, Marc's 9th birthday (big family dinner, party at LaserQuest and sleepovers with little friends - is he spoiled or what?), Easter (church, brunch, and the Easter bunny's egg hunt).  Kjell-Eivind was also visiting Kathy from Sweden for a week and we very much enjoyed his company.  When we add all that on top of the children's regular activities of ballet, karate, drama, piano and homework... then we realize that the pace we keep is pretty fast. Perhaps this has helped Chris to focus on "living", rather than just surviving (in a hospital, time seems to stand still and even at home, pain or discomfort management can take its toll) - or maybe all the activity simply tired him out so much that he sleeps more and better!

Due to scheduling difficulties, the long awaited chemotherapy will have to wait another week: we are now looking at a chemo start date of May 8th with a week in hospital here in Toronto. In a way, it's a blessing because Chris will not miss the children's First Communion and Caroline's 8th Birthday - yes, there is a silver lining in every cloud!

We have been receiving many more emails and, as always, we enjoy keeping in touch with family and friends - old and new (the list is growing exponentially!)  In particular, we would like to thank the DSRCT and other cancer survivors who have provided valuable encouragement and advice to us over the past few weeks.  Happy spring everybody!

April 23, 2000 - Decision, decisions ... we have had to again make an important one with regards to which mode of chemotherapy to take on. We have decided to proceed with a standard dosage chemo treatment over a few months (or as long as it is effective in tumour reduction), starting with May 1 or 2. The first treatment will be over 5 days in the hospital. Subsequent treatments would be in the day clinic as an out patient. We are otherwise doing pretty well. The kids have their roster of activities and Gabriella keeps it all together. Keep your prayers and positive energy coming. We appreciate all the good wishes more than words can say! Love and blessing to all of you.

April 18, 2000 -
It's Gaby's Birthday today and she will probably be mad at me for letting you all know, but I just wanted to wish her a Very Happy Birthday! Love you lots! Your sis.

April 14, 2000 - Big decision time!
Just got back from 2 days in New York late last night. First we met Dr. Coit who performed the March 7th surgery and closed that chapter in a satisfactory manner: Chris has healed well and he should now focus on his next treatment... and on adding a few calories to his diet too!  Next, we met with Dr. Sharma (he is the one who had picked up the new DSRCT diagnosis) and he urged us to begin the next treatment ASAP. Both doctors had contacted Dr. Kushner, at our request, since he has had the most experience with DSRCT at Memorial Sloan Kettering (probably in the world!). He is available to meet with us tomorrow - could we stay an extra night in New York? Of course... Thanks again Hila for your warm hospitality!

The next day  we enjoyed a nice lunch on Madison Avenue and met  Dr. Brian Kushner in the afternoon. There is no doubt, he is THE doc, the one whose name comes up on all the abstracts dealing with DSRCT research and on most of the other DSRCT web sites... and he does seem to be very competent, aggressive... as well as compassionate and human. We were very pleased and thankful that he agreed to be the "champion" for Chris' healing journey. He started by telling us the "facts": The tumor is extremely rare and very aggressive. Chris has had two years of sub-optimal chemotherapy. The tumors are no longer resectable. The disease has spread considerably. Conclusion: this situation is NOT CURABLE. Now, we have heard this exact statement from seven other doctors and yes, this time, it hit home a little more. Still, to that 'not curable' we add the word 'today'... new cancer treatments are made available daily it seems, so who knows what new drug we could try tomorrow... And then I also add my own small ray of hope: "Don't be surprised if this is the one you write about doc, because somehow, Chris WILL make it". Somehow...

Dr. Kushner proposed several alternatives, leaning towards a palliative low-dose chemo. However, Chris quickly responded that at the age of 37 with two young children, he is not ready to give up the fight. The decision we must now take is not easy: high dose/aggressive chemo or regular dose chemo, followed with a palliative protocol thereafter. The high dose chemo obviously has the best chance for the tumor reduction... but since we can't quantify the potential risk/benefit ratios, we can't use math to make a decision. What we do know is that high dose carries the risk of death and 25 days of hell for one single treatment. We need to discuss the options with Dr. Moore, who would be administering the treatment here in Toronto... Other doctors have refused to give such high doses... And yet it is true that the highest risks bring the highest rewards... Is this the time to take the big risk, or will another opportunity present itself in the not too distant future? We will sleep on it, ask for guidance, reflect some more, and get the ball rolling on Monday.

April 6, 2000 - Chris continues to recover with one good day, followed by one not so good day.  Along with the relief that codeine brings, the problems of digestion and regularity follow - so the dosage of other drugs (senokot and colace) must also be adjusted... it is truly amazing how our body can normally do all this without the help of a computer!

I personally made a big (not easy!) decision: to take a leave of absence from work for the next 5 to 6 months so that I can focus all my energies on helping Chris heal and on the children.  I have quickly realized that although I can do some things, others can only be done by Chris... Last night for instance, I made osso bucco - first time, lots of work, big success (according to my toughest judges, Marc and Caroline) - but Chris was not feeling well, so he did not join us for dinner...  We were all disappointed, not so much because of the food, but because he skipped a meal when he really needs the calories: he weighs 120 pounds! So now we are focusing on bigger and better breakfasts and lunches...

April 3, 2000 - One great day, one bad day, and one good day today: less pain, less sleep needed, more appetite, more awake during the day and less awake at night  - who could ask for more?! Chris seems to have adjusted well to the slow releasing codeine pill... We met another cancer survivor and had a long chat with her. Very inspiring story. Our focus now is on choosing our team of doctors, both in Toronto and in New York. We are keeping our eyes and ears open.  It will come...

March 31, 2000 - Today was a difficult day for Chris. Still adjusting to the new painkillers, plus the after effects of yesterday... The hot water bottle helps, changing positions from the recliner to another chair or sofa, and massages from Gaby (she never used to like to give or to receive them, but according to Chris this must have been one of her hidden talents!).  We are trying still another pill: slow released codeine based on the dosage of T3's taken over the past 48 hours. He was not able to sleep much during the day due to the pain, so we are keeping our fingers crossed for a good night of sleep tonight.

We also confirmed our two appointments at Memorial Sloan Kettering in New York for April 12th. It will be an in and out visit (no MOMA or FAO this time) with the purpose of reviewing our action plan going forward. Not much is likely to happen on the medical front between now and then... or so we hope.

March 30, 2000 - High stress day!
Yesterday, Dr. Zheng (an oncologist from the palliative community care team) suggested Chris stop taking the Percocets because they were making him too drowsy (he was sleeping 2 hours out of every 4) and move to T3's on an 'as needed' basis. He was worried about the amount of pain Chris was experiencing, especially since he described some of it as 'bone pain'.  Dr. Zheng asked the next logical question: had we ever done a bone scan?  Our family doctor, Dr. Janis Browne, was able to arrange it for today (another one of her many little miracles on this journey!).

So we started the day with the bone scan.  We were amazed and pleasantly surprised at the compassion and flexibility shown by the staff at the hospital. First, they arranged for an adjustable bed for Chris for the two hour wait between the injection and the scan. We were both very apprehensive about Chris having to lie down flat for the procedure (he hasn't been able to lie down flat since last November due to the pressure of the tumours), and they found a perfect solution: move the scanner sideways and have Chris stand! We thanked them profusely...  Needless to say we were extremely nervous about the scan results: if the cancer did move to the bones, this would be such a big setback! Well, we did get the results later in the afternoon: negative, thank God and all who are praying for Chris! 

Our follow-up appointment with our surgical oncologist at PMH went very well. We reviewed the surgery notes and the medications Chris is currently taking. Dr. Steve Gallinger has been an important part of our team and we very much respect his opinions.  We arrived back home late afternoon and Chris had not slept yet... unfortunately, a long nap resulted in a bad night' sleep.

March 25, 2000 - Sorry about our delay in providing an update: it's a combination of not much news to report and everyday life keeping us busy! But here we go...

First of all, Chris' brother Danys came to visit from France. The house was buzzing with activity and Chris very much enjoyed seeing his brother. We all enjoyed meal time in particular (for those of you who don't know Danys, he is an accomplished gourmet chef!). Thanks for coming Danys!

In terms of surgical recovery, pain and sleep management continue to be our biggest challenge every four hours. Some pills were too strong and others not strong enough; we think we finally found the right combination this weekend (1 Percocet + 1 Tylenol during the day and 2 Percocets at night). Last Monday, Chris experienced extreme weakness and we went to Emergency at Mount Sinai Hospital: after one bag of saline, he felt better and was sent home. Needless to say, drinking water has since become a priority.

The doctors in both New York and Toronto had mentioned the importance of nutritional therapy (intravenous TPN) in preparation for any further chemotherapy. So we sent emails and faxes to the various doctors to determine how soon this can begin. It 's amazing how long it can take to get a simple answer these days: we scheduled a follow-up appointment with our surgical oncologist on March 30th, with our new oncologist since the DSRCT diagnosis on April 4th, and we will go back to New York to review the test results and develop an action plan on April 17th. We are trying to move up all of these appointments to get the show going a little sooner.

This weekend, Chris insisted on sending Gabriella, Marc and Caroline to Montreal for her mom's birthday. It was also a good opportunity to see her dad who just had a kidney transplant and is recovering slowly at home, just like Chris. Meanwhile, Chris stayed at home with his mom and welcomed a few days of rest.

Finally, although we continued to receive many emails and good wishes, we have not had a chance to respond to any of them yet: you'll be hearing from us soon! With love from our family to yours...

March 16, 2000 - Chris was released from the hospital today! We left Memorial Sloan Kettering Cancer Center nine days after the surgery. Chris agreed to make use of a wheel chair at the airport; it was difficult for the ego, but easy on the legs, the back, and the sensitive abdominal area. The New York to Toronto flight was very smooth, and Kathy and the children were waiting for us at the airport. Really really big hugs!! What a treat to eat in our own dining room: it feels great to be back home!

We have many thanks to give, mentioning just a few:

Obviously, the recovery will continue at home for the next few weeks. Once the results from the tests on the tumors are available, we will be working on a new chemotherapy action plan. Until then, we will slow down the pace and smell the roses at home. We will continue to update this site from time to time, as new developments occur. Thanks again for your prayers.

March 15, 2000 - Today, Gaby met with a nutritionist to see what recommendations she may have on healing foods that help the immune system. Chris has been experimenting with various pain killers in order to determine the most effective ones for him. His recovery continues and for those of you who are worried about the nurses at MSK ... I'm sure they are safe! Thanks again for all your support and kind words!

March 14, 2000 - Recovery is ongoing and Chris is getting stronger day by day.

March 13, 2000 - Chris is getting stronger every day.  Today, we met with the medical team and the going forward action plan will have to wait for the results from the tests in California and the biopsy.  They confirmed that Chris' recovery from surgery is going well.  On the food front, his appetite is slowly coming back and he ate regular meals.  Hila made Chris' day by bringing him marzipan treats!  To top things off, Chris beat Gaby at gin.  Finally, we read more comments from the Guestbook: we are inspired and touched each time.

March 12, 2000 - Today, Chris was taken off morphine and other IV medications - needless to say he is happy to give up his "walking stick".  He also began eating soft foods again and is feeling much better as he is gaining back his strength.

March 11, 2000 - Chris is feeling a little less discomfort today, took two nice long naps and walked a lot as well.  They have been enjoying some entertainment at the hospital such as a piano concert, and a comedy show tomorrow.

March 10, 2000 - Recovery is progressing well... well, actually Chris has quite a bit of discomfort with a swollen abdomen and colon. It's most likely because he started eating regular foods too soon. So back to a liquid only diet until all the gas has passed through his system. When he is sitting, he feels OK. Getting in and out of bed is hard. He continues his walks and took his first shower today: that felt really good for all concerned!

We had a few visitors here in New York - Roger and Judy, with whom Gaby has been staying with until today; Eric was on a business trip and stopped in for lunch with Gaby and a visit with Chris; and Chris' mom arrived this evening for the weekend. Yes, we can still manage to keep a busy social life away from home!

March 9, 2000 - Re-engaging digestion is a bit of a problem causing some discomfort - something the pain killers do not help with.  Breathing exercises help but Chris is still experiencing shorthness of breath (which is normal after an operation).  Oh well ... it's only been two days and he will take is easier with food for a while.  He took more walks today and spent some time on the computer again.  Again, we are overwhelmed by the continuous flow of messages and good wishes.  Thanks!

March 8, 2000 - The first day of post-surgery was very good.  Chris took his first walk in the morning and a longer one in the afternoon (albeit with the help of strong pain medication).  He also ate regular foods for lunch and dinner - he is gradually building up his appetite again.  It may sound like a little, but it's a lot - the doctors were very impressed with his being back on his feet so soon. Sleep on the other hand is another story, as in all hospitals, sleep is one of the biggest challenges with all the noise and interruptions.

Although we are a little disappointed about the number of tumors that were removed during the surgery, we are pleased with the surgeon's decision: the risk would have been too high to be any more aggressive.  The silver lining that we are counting on is that these events will lead us to the next step in our healing journey.  The lab tests will possibly reveal a new protocol of chemotherapy or additional treatment options.

There is a "recreation center" on our floor at the hospital where as of today, Gabriella will be quite happy there during Chris' naps.  The center offers all kinds of arts & crafts, a library and a computer of course.  Gabriella brought Chris to the computer this afternoon and he saw the Webpage for the first time and read the Guestbook with everyone's messages.  He was very moved by the strong show of support (it's very different to read it yourself than get the message from someone else).  Thank you again for all your kind words and prayers.

March 7, 2000 - The operation was over at around 7:30 PM.  The doctors removed 2 tumors - a large one of 7" to 8" in diameter and a smaller one of approx. 1" wide. They will use the smaller one in laboratory tests with new chemotherapy and see what the next treatments options will be for Chris.  Chris himself is fine and will return to his room shortly to recover from the operation.  We thank you all once again for all your prayers and support.

March 7, 2000 - At noon today, Chris and I said our own family prayer. Thank you to everyone who participated in sending us prayers and love. Then, I went to a small church next to the hospital: I felt lots of positive energy there, and I felt very good about being here in New York. Chris tried to sleep most the afternoon after that because he felt weak from not eating for 48 hours.

I left Chris in the OR around 3:30PM; the surgery started around 4:00PM. Chris' spirits were good, calm, a little nervous, but looking forward to this long awaited surgery. We know it's the right next step. We also know the next few days will be particularly difficult physically for Chris, but that's OK, it's part of the healing journey.

We kept thinking how fortunate we are to be so well surrounded by family and friends, and to actually be here, in the very best possible hospital for this surgery. Thank you again for all your positive thoughts. You don't know how much it actually helps!

March 6, 2000 - We have received so many messages back, that we know we will be well surrounded tomorrow. Thank you!
We met with the surgeon, Dr. Daniel Coit, this morning in New York. The good news is that it's a Go. Dr Coit reiterated that there are no guarantees, that it will be a very difficult and complicated operation, and that the risks are very high. He outlined the various possibilities to us, based on his judgement:

So, the longer the surgery, the better! The surgery is scheduled for later in the day than we originally thought (after about 6 shorter and simpler procedures). As per the schedule, Chris should be in the operating room at 5:30PM (give or take 2 hours). I hope it will be a long night! You can unite to send energy at noon as we had requested (to take away any pre-op stresses) and again at 6PM to give it a good start. Chris is settled in his room and looking forward to a good night's sleep - he finds the hospital bed VERY comfortable. I told him he better remember that comment in two weeks' time! Thanks again for your love and support: it really makes a  big difference to know that we are not alone!

March 5, 2000 - Gaby and Chris left for NY today.  It was a difficult goodbye - especially with the kids.  They did get upgraded on the plane though ... and that's a good thing!  They are sleeping over at friends tonight and go to Memorial Sloan Kettering (MSK) tomorrow for registration and pre-op tests.

March 3, 2000 - Well ... we have finally overcome one obstacle!  OHIP have agreed to finance the operation in NY (at least part of it - we will deal with extra expenses if required when we return).  So it's confirmed that Chris & Gaby are leaving for NY Sunday evening.  Thank you so much for all the support you have all given us so far - your positive thoughts and prayers are obviously working - and we look forward to giving you more updates once in NY.

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