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. 

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!

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! 

As you know, Bill had a biopsy done on Monday afternoon.  The actual procedure went smoothly but unfortunately Bill experienced major swelling in the brain during recovery. The swelling caused an increase in intracranial pressure (the pressure inside the skull) which resulted in a sudden and significant change in his symptoms.  The doctors are still struggling to get it under control.  Currently he is having a great deal of difficulty communicating as he can’t ‘find’ the right words.  This means that what he says often doesn’t make a lot a sense.  He is aware of it and finds it really frustrating that he is unable to say what he wants.  He understands almost everything that is said to him, but his memory has also been greatly affected which is causing additional complications and confusion.  This morning he seemed a little better.  He was headache free and feeling pretty good.  A physio assisted him in a short walk and then he was transferred to a wheel chair so we were able to go outside and enjoy the sunshine for a few minutes.  It’s amazing how you appreciate the little things like peaceful moment together in the sun during a time like this.   

Despite a bad headache returning this evening we are remaining cautiously optimistic that things will improve throughout the week.  The biopsy result should be in by next week and then the team of doctors will determine the best course of treatment. 

 Thank you all for the continued thoughts and prayers.   The support from family and friends has been incredible and we are very grateful. 

I wanted to update things as we head into the biopsy on Monday (July 25th).  Everything we have been doing until now has being working towards this ever-so-important event.   The plan will be to place a small needle into my brain allowing them to take a sample of my brain tissue.  The brain tissue should tell them everything they need to know about the tumour and how treatable it is and what steps will be next.

Once the biopsy is complete we are looking at about four to six weeks before starting into treatment.  During that time they will analyze the tumour right down to its DNA level in order to create the most detailed plan of attack.  I hope to be back with an update later next week after with preliminary ideas as to what we’re up against.  I will certainly try to keep everyone in the loop.

The main problem with keeping everyone informed is that the process of writing my blog is challenging.  Typing can be ridiculously challenging and that is just the way this tumour is affecting my brain functions.  It is frustrating and time consuming but it seems to be testing my mental fortitude and I have never backed away from a good challenge.

Thank you again for all of the well wishes. I know that I’ve mentioned it a few times but the support remains a hope and inspiration for both Maureen and myself.  And I keep remembering my college and friend Reggie who said: “Remember: You’re Bill effing Hann”.   And for that I not let it win.

And the MRI is complete.  It is the first very critical stage towards planning their attack on this tumour.  The MRI itself was strait forward – they put you in the MRI tube and slide you down inside for about 45 minutes while they take pictures.  The machine is surprisingly loud – it’s like having a jackhammer cycling on and off as it takes pictures of the body and, more specifically for me, my brain.

 Obviously what we’re after is information.  So far it is preliminary but Dr. Hentschel was kind enough to call us after the MRI to give us his take.  As I mentioned the other day Dr. Hentschel is the Head of Neurosurgery in Victoria and will factor prominently as he and his team determine how they proceed with  their attack against this tumor.  We are still in the early stages but each piece of information gets us closer to the final treatment plan.  Next will be a careful analysis of the MRI followed by the biopsy which should take place around the 25th of July. 

So for us this means that we have a lot of work ahead.  There is no doubt that this is serious business – brain cancer is tricky and there are a lot of intricate factors playing out.  This cancer surrounds a lot of critical parts of the brain and early indications say that it will be a matter of managing the disease as opposed to curing it all together. 

Emotionally I would say that I’m in a pretty good place.  The support that has been offered by friends and family is unbelievable and we’re going to take the bulls by the horns.

Today was a promising day.  We had the opportunity to meet with Dr. Hentschel who is the Head of Neurosurgery in Victoria.  When it comes right down to it, he will be the guy with the knife in his hand when the time comes to slice me open.  He left us with very good impression, instilling confidence while taking the time to answer our questions.  Dr. Hentschel was the first to admit that the CT scan is basic in nature and that he cannot give any specifics – that will be provided by the MRI and further by the biopsy.  In his opinion, there is a chance that the tumour is of the slower growing variety, which is good news.  Our research would indicate that something that has been growing at a slower rate will be easier to treat and be easier to manage long term.  Our MRI is scheduled for Friday and that should be our next chance to see what we’re facing.