As many of you now know, Bill lost his battle with cancer on November 11, 2012.  A fitting day for someone with his strength and courage.  While broken hearted, we are glad that Bill is no longer suffering and I believe that somewhere he is again in the skies, flying an airplane.
Please join us on Sunday, November 18th at 2:00 pm at the Oak Bay United Church, 1355 Mitchell Street, Victoria, BC to celebrate Bill's life and to say goodbye to an amazing husband, father and friend. 
 
It has been a long time since I posted an update about Bill because for a long time we had settled into a routine of our new normal and did not have a lot to report.  Bill continued to have stable MRIs and slowly but surely worked towards recovery.  We took advantage of his increased energy and general improved health and headed off on a few weekend get aways through the summer enjoying time in Saltspring, Whistler and Parksville.  Bill even managed a trip to the Queen Charlottes with his good friend Graham, a place he had always wanted to visit again since flying there early in his career.  September brought a return to school for the kids, work for me, and fabulous weather for Bill to enjoy!  One of the biggest challenges for Bill through this period of time was ongoing back pain.  A side effect of one of Bill's medications is a loss of bone strength and this resulted in Bill developing multiple compression fractures in his spine.  Just as the inital ones seemed to be improving new fractures occurred causing very severe pain. 
Unfortunately, Bill's most recent MRI in mid October showed new tumour growth.  This, combined with the intense back pain which we have been unable to control at home led to Bill being admitted to the hospital last week.  Throughout the week in hospital Bill's tumour related symptoms have become much more pronounced so the doctors have recommended he remain admitted where they are best able to control his pain and monitor changes. He has just started on a new medication called Avastin and we are cautiously hopeful that we will begin to see some improvement and be able to get him back home.  For now we remain in a waiting game.   
 
We are feeling completely overwhelmed by the incredible hard work, support and generosity of our friends and family.  It is impossible to express in words our appreciation for all that has been done for us.  Fighting an ongoing illness is exhausting but Friday’s event left both Bill and I feeling refreshed and ready to continue the fight!  It is  amazing the impact that support has on one's state of mind.  
 
It is impossible to fully understand all the emotions and challenges that come with a cancer diagnosis until you live it.  I have a new respect and understanding for people who have gone through similar experiences and I know firsthand how important it is to have a support network. I sincerely hope no one else ever has to face this but please know that in the event someone we know does, we will be the first people ready to help.

Bill finishes his 6th round of chemo tonight.  Each round seems increasingly difficult and makes him more and more tired but we are hoping he will bounce back again in a week or so.  Technically this is the last chemo he is to receive. BC only covers 6 months of chemo for glioblastoma, unlike some of the other provinces which cover 12 months. Dr. McGhie, our main oncologist who has been extremely supportive,  is requesting to have Bill’s chemo
treatment extended as he has responded well to treatment showing several months of tumor regression, and most recently a stable MRI.  

So, on we go...

Thank you again to all who donated gifts and attended the event on Friday and many many thanks to Allison Benson, Penny Lloyd, Meredith Moll, Ian Gracie, Harbour Air, and Westjet for your work in putting it all together and for your continued support!

 
This marks an important date in our fight against this nasty disease.  Today, for the first time since before the biopsy surgery Bill has written his own progress post!  We are celebrating the fact that slowly but surely the ability to read and write are returning.
--Maureen

Well here I am and definitely heading in the right direction as I am now able to compose and type the blog by myself.  That should make for more frequent blog entries and updates to what’s happening in our world.

I know it’s been quite some time since we’ve made a blog entry but hopefully that will change with my ‘new’ skills.  It’s the end of February, the 26th today.  I am finding that the hardest part is finding the occasional character on the keyboard but otherwise the reading I’ve been doing, although challenging and a bit slow at times, is proving beneficial.    Have having the ability to communicate via the blog will be a big advantage and I will won’t have to get Maureen to do it all.

So what’s been happening in our world for the past couple months?  Well, monthly Chemo is still a reality for five days each month.  We have figured out a system and other than added fatigue at Chemo time, things haven’t been too bad for the five days during Chemo each month.  Confusion with certain things is still an issue but we attribute some of that to the medication but hope that decreases with a reduction in that medication over time.

Generally I feel pretty good.  I try and get out for a walk every day barring the occasional day when the weather is so bad that I can’t.  This is Victoria though so there’s usually some time during the day that going for a walk is possible and yesterday was beautiful out.

That’s all for today but standby for the next issue. 
--Bill

 
Another long delay in updates...my apologies.

We have just finished the second round of ‘maintenance chemo’ and to say it has been a roller coaster would be an understatement.  In early November Bill had his first of six rounds of maintenance chemo.  This means  five days of chemo followed by twenty three days off.  Bill had tolerated the initial chemo fairly well so we began the first found feeling fairly confident.  We were put in our place quickly.  The dose this round was much higher and despite anti-nausea medication Bill was sick, sick, sick the first night.  Through trial and error we discovered when he could and couldn’t eat to keep the illness in check and the rest of the days were ok.  He finished the first round on a Tuesday and it was one of the best days I can remember him having in months.  Wednesday arrived and in 24 hours things turned 180 degrees.  He began sleeping 18-20 hours a day (more if I would let him) and his symptoms returned to a level that was very similar to the days directly after the biopsy surgery.  It was a very, very tough week.  We started him back on the steroid to control swelling (which he had been off for a few weeks) and eventually got in to see a doctor.  Dr. Bester, new to us, but wonderful (one of my favourites so far), quickly arranged an MRI and prepared me for the worst – tumour progression.  Bill had the MRI the following day and the results came back much better than we anticipated.  No new tumour growth – just new swelling.  Swelling is a major complication, but it is a much better option than a growing tumour as it can be treated with the steroids.  Just as things started to level out it was time for round two.  We got a much stronger anti-nausea this time and things went a lot better.  Bill is really tired as a result of the chemo but manages to maintain an amazing attitude.  The timing of the chemo is quite good as he will be two weeks post when Christmas arrives so we are hoping it will be a good day!    

Please keep your fingers crossed that this tumour keeps shrinking!

 Merry Christmas!

 
 We have received Bill’s most recent MRI results and things are looking up!  Bill’s tumour has shrunk noticeably!  It is still a large tumour but given the possibilities of growth, no change or reduction in size we were delighted to learn it was smaller.  This type of cancer is apparently very tricky and each person responds differently to treatment so there was no predicting beforehand how it would look.

After a month break from treatment Bill begins chemotherapy again on Friday.  He will be on a repeating schedule of 5 days of chemo followed by 23 days off for the next six months.     As most of you know, chemo is incredibly hard on the body so the thought of beginning another round is daunting but we are pulling all our strength together in an effort to prepare!

Overall Bill is doing much better.  We’ve been able to cut his steroid dose (used to control the swelling) by 75% and hope to take him off it completely in the next few weeks.   He still struggles with finding the right words at times and his strength and stamina are not what they were but he is trying to maintain a reasonable level of activity.  One of the biggest sources of frustration for Bill has been the loss of ability to read and write (aphasia).  There have been days recently where he has been able to read a little bit and we understand that many patients who receive speech-language therapy are able to regain these skills so we remain hopeful!  Unfortunately Bill’s visual deficits have remained and our oncologist feels they are likely a result of the biopsy surgery not the tumour and therefore are permanent. 

Thank you to everyone for your continued support, thoughts and prayers.  Please keep them coming and hopefully his next MRI will show further reduction!

 
Bill finished his radiation and chemotherapy last Friday.  The days feel strangely empty now that they are not filled with appointments but it is nice to have some quiet time at home while the kids are at school.  We have a month of 'recovery' time before possibly starting chemotherapy again.  Bill has an MRI scheduled for the end of October at which point we hope to have a sense of whether the treatment to date has reduced the size of the tumour and from there decide where to go next.  Right now we are trying to wean Bill off as many of the medications as possible, a process that takes several weeks. 
Bill is finding the days right now quite tough.  He is often tired and small tasks are challenging.  It is incredibly difficult for him to constantly feel confused yet still have an awareness that he isn't able to do the things that he could before.  We are just taking things day by day. 
Thank you everyone for your continued support.  I read Bill all the emails and messages that are sent and I know he appreciates that people take the time and are thinking of him.
 
Sorry for the long delay in updates.  The days just seem to get busier and busier and it is tough to find time to sit down and write.

We have passed the half way mark in treatment!  The first few weeks went really well with Bill suffering few side effects.  However, as expected week three arrived and things got much tougher.  In addition to the regular side effects of fatigue, weight loss and hair loss Bill is now also dealing with swelling in the brain due to the radiation treatment and the side effects of the high doses of steroid used to control the swelling.  Routine tasks are very challenging for him as he gets tired so quickly and the swelling has again resulted in an increased level of confusion.  We were warned by the oncologists that this period of time would be very hard but it is impossible to really understand just how hard until you are living it. 

Bill takes oral chemotherapy 7 days a week and has radiation 5 days a week.  Almost every radiation day we have a second appointment, either with a nurse, doctor, the pharmacy or for a blood test.   There are a whole team of people who oversee Bill’s treatment and he is fully assessed each week to ensure that he is ok to carry on.  The care at the Victoria Wellness Center (aka the Victoria Cancer Center but we prefer to think of it the other way and have thus renamed it) is excellent.  The medical staff are dedicated, patient and knowledgeable and there is a volunteer program full of wonderful people who make being there every day a bit more tolerable. 

Throughout this time, through a number of waiting room conversations, I’ve encountered amazing stories of human spirit.  People who have fought and beat cancer several times, people whose bodies have waged war against them who simply refuse to accept defeat and keep on fighting and winning against the odds.  It is inspiring.  As for us, every day is different, some better, some worse, some much worse.   We are getting through the weeks day by day, sometimes through the day just hour by hour.  But we are getting there and we are not giving up hope.  Bill continues to handle everything in his usual stoic way and with such incredible grace.  His courage makes me so proud.

Many thanks again for all the kind thoughts and messages and to the people who continue to help our family.  The assistance with dinners, childcare, housework, yardwork, birthday parties, flights, appointments, special letters and gifts to the kids, research and information about clinical trials and alternative treatment options – all of it is what is getting us through.

 And to my amazing sister in law and my friends who have organized things from afar and given up their holiday and vacation time to fly out and help us – I know I don’t say thank you enough but I think it every day. 

 
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After much waiting we at last have a treatment plan!  Initally the doctors had refered Bill for paliative radiation only, but when we finally got to meet with a radiation oncologist she was amazed at how well he was doing and recommended a much more aggressive treatment.  We were very happy to hear it!!  As the doctor we were initally refered to is heading off on vacation we were transfered to Dr. Abe Alexander, who incidently was a high school friend of mine.  He has spent a lot of time answering our questions and put a rush on the process allowing Bill to begin treatment more quickly then anticipated.  Bill is scheduled to begin radiation and chemotherapy later this week.  Radiation will take place 5 days a week for 6 weeks in addition to daily chemotherapy for the same 6 weeks followed by monthly chemo for 6 months.  We are expecting this to be a challenging time as the radiation apparently causes swelling in the brain making the symptoms worse.  I am envisioning something similar to the days immediately post biopsy but hoping that it will not be as severe.
The big fight begins now and we are feeling ready!  We know the next few months will difficult but the love and support we are receiving keeps our spirits high. 
Thank you again to everyone who has offered help.  We appreciate it more than you know.  Please keep the healing vibes coming our way.  We are convinced they are helping!

 
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Hooray!  After six long days in the hospital recovering from the biopsy the doctors allowed Bill to come home.  It took a bit of begging and promises that I would have lots of help and support but in the end they agreed! Part of the deal to allow me to bring Bill home was that we receive 'home care support'.  I had no idea exactly what this meant at the time.  As Bill wasn't walking well at the hospital the physical and occupational therapists appear to have ordered one of everything from Red Cross so we have a truck load of equipment to help Bill navigate around the house.  Fortunately his ability to move has recovered so most of it is currently stored out of the way. In addition, I believe almost every possible health care worker in Victoria has now visited or phoned our home.  We have a 24 hour quick response team, a physical therapist, an occupational therapist, home care nursing, counselling, the cancer clinic, the hospice society, the list goes on....it is hard to imagine how many people are involved in making this happen.  The resources are incredible and the staff who have come to check on us have been wonderful.  
A few days after returning home we received the result of the biospy.  Unfortunately it was not what we were hoping for.  Bill has been diagnosed with a type of brain cancer called Glioblastoma (GBM).  It is one of the nastiest ones out there. We will be meeting with an oncologist to determine the recommended path of treatment next week.  In the mean time we are researching a variety of newer therapies and clinical trials offered in centers around the world.  
Overall Bill has improved enormously from the days after the biopsy.  He is feeling well but is still limited in what he can do as the tumour has affected his language processing center resulting in a loss of ability to read and write.  We are hoping this will improve when treatment begins and pressure on this senstive area is further reduced. 
We continue to be overwhelmed by the support we are receiving from friends and family.  Thank you does not begin to cover it.  We would not be getting through this without you.  We are enjoying this time of 'relative' calm before treatment begins as we know the hardest part is still ahead of us! 


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