Almost Another Month…

Time goes slowly but races by. Each day starts and brings us closer to the day I dread. It is mostly at night, when the world sleeps that I think about what life is going to be like. Then, I can’t sleep.

I watch Mathew sleep. He doesn’t like to be alone anymore so John and I spend our time in with him ~ wherever he is. As I watch Mathew’s chest rise and fall with each sleeping breath I wonder how can it be that this insidious sickness is creeping throughout his lungs, silently damaging his lungs even as I watch. By all appearances Mathew still looks good. His oxygen levels are good and his lungs are still clear to someone listening with a stethoscope. In the quiet background though the cancer is growing, always growing with nothing in his body to impede its progress.

A second pain developed shortly after the last post, this time in his right shoulder. After conferring with Mathew’s health care team it is believed to be reflected pain from his right lung. There is nothing in the area of the tumour in his right lung that can radiate pain…so it travels somewhere else??!! This is a “thing”, a rather unusual pain effect I wasn’t aware of.

That pain comes and goes; mostly managed with the 30 mg of slow-release morphine interspersed with 10 mg of immediate relief morphine.

Mathew is now nauseous each morning when he wakes up. It could be all the medicine he takes or perhaps it is related to the cancer. He gets anti-nausea meds daily, at least once, to keep it at bay.

The appointments with his Oncologist and Radiation Oncologist went as expected. Unless Mathew’s cancer shows up in a bone somewhere they won’t do any radiation. Tumours in bone hurt…a lot. Tumours in the lung don’t because there are no nerve endings, except for along the outer lining (which is why Mathew is experiencing pain with the two tumours growing on the outer lung regions). If a tumour makes him cough up blood, press on a major organ in the lung region (by that I think they mean his heart) then radiation will be looked at as a palliative option only.

It should be noted that the health care team talk about end of life care now. What we might expect, some things to look for, and after death planning.

Mathew talks more about dying and is bringing the subject up into conversation when people visit and also on his iPad. He posted something to his Facebook status, for the first time ever last week, acknowledging his cancer will kill him. He and I discuss his worries and concerns when he brings them up.

He does have intense anxiety and panic attacks where he needs to vent some emotion. It is hard for him to do and so it is very intense when it happens. Once the pent-up feelings spill out a calm settles over us again, while our shell-shocked selves try to mellow out until the next venting.

He is not going quietly into the night. He stands by his decision to not continue with chemo last summer; the potential side effects were his worst nightmare and he wanted to enjoy his time left. I knew we might second guess that decision as the chain of irreversible events creeps ever forward but I won’t give in to it. Whenever the end comes it will be too soon.

It will always be too soon.

Dreading 2017

To be blunt, this is the year I will bury my son.

The Wednesday before Christmas I took Mathew to our local emergency room because of severe left chest and underarm pain. It had started as an intermittent pain that grew in frequency and intensity until Mathew wondered if he was having a heart attack. None of the pain meds were working so off we went.

The ER Doctor did an ecg, determined Mathew’s heart was working just fine so sent him for an xray. The xray showed effusion (fuzzy white stuff where the colour should have been black) so off Mathew went for a CT scan.

The ER doctor told us Mathew’s cancer had progressed significantly since the last scan done back in May 2016. There were three tumours, 2 in the left lung and one in the right. The doctor adjusted Mathew’s pain meds by doubling the morphine to 30 mg three times a day, suggested we contact Mathew’s Oncologist and also said he would send a pain specialist our way.

We saw the pain specialist a few days ago. She brought with her a copy of the written report from the scan which we were given. It is worse than either John or I imagined. Kristen was with us, being home for Christmas, but Mathew was resting in his bedroom so he doesn’t know about the written report and we will not tell him because it will upset him greatly.

The written report shows his lungs are riddled with Ewing’s Sarcoma and so are the lymph nodes. Some of the nodes are up to 5 cm in size (think of a lime) and one mass is up to almost 6.5 cm. Both the pain specialist and the ER doctor expressed surprise at how well Mathew is functioning so far. I gather his youth is making up for any deficiencies thus far.

The pain specialist gently suggested we start making or finalizing end of life care, to visit the local hospice house and think about funeral arrangements.

The next step now is for a Respitherapist…or someone like that, to come into the home and see how Mathew’s oxygen stats do when he walks or moves around. Dr. H., the pain specialist, could hear a bit of lung deflation where a conglomerate of nodules are growing together in Mathew’s lower left lung. We are also planning an appointment with the Oncologist and Radiation Oncologist to see about palliative radiation to the area of the lung causing Mathew pain. This would be for palliative care relief only.

Mathew feels sick a lot of the time and has basically stopped going out of the house. We did manage to get out a few times before Christmas but maybe once a week if that.

Christmas was very relaxed and we enjoyed being together and taking it very easy. We had our own Christmas dinner this year, cooked by John, with plenty of leftovers. Kristen’s visit was too short…*sigh*…as always.

My time is devoted to Mathew. As he seems to be in a decline, health-wise, I find it difficult to update the blog. One, I don’t like talking about my feelings and two, I’d rather not spend time rehashing what is going on and thinking about it here.

I will keep you posted on updates that come along but I don’t see them being great news. Our goal and focus is to keep Mathew comfortable and comforted. For him that means me being glued to his side and it is an honour to provide him with that security.

I expect we have a couple of months… to the end of May at the very, very latest. It is with a dreadful disbelief that the days are counting down and I want to freeze time rather than face the inevitable day growing closer.

My heart is breaking. All of our hearts are. Mathew is loved by so many but he is unable to manage much stimulation these days and he prefers it quiet. Family stop by and visit in twos, maybe in threes on a good day.

Mathew’s interest in food comes and goes. He isn’t interested in most of the junk food that he used to love and he only eats one, maybe two meals on a very good day.

Anyone with a health care background will know this is the general decline of a cancer patient. There is no miracle here and neither did I expect one although there way always that little bit of hope.

We do not believe in God or have any religion to speak of. We are comfortable in our beliefs and ask that this is respected. If prayers make you feel better then by all means go ahead in your own time and place but please don’t ask me to pray with you… as I was asked today. I am happy for you if you believe in God and find solace in that. I am putting this out there for those who may not know us very well because my patience is getting shorter.

So it is 2017.

I hate it already.

Thanksgiving 2016

Before I launch into Thanksgiving this year, first is a picture of Mathew at the concert in Moncton. This was the one for “Five Fingered Death Punch”.


Mathew at the concert…

Tis a lovely photo to be sure and a typical one of dear Mathew…  I did stay in the parking lot for the concert’s duration and enjoyed myself in the warm evening reading a book. I could hear the music and screeching just fine out there in the truck and had no desire to be inside. John and Mathew thoroughly enjoyed the concert and saved their ears by inserting earplugs. We got a wheelchair-reserved spot so Mathew could enjoy the concert in his wheelchair; it is a lot more comfortable than the coliseum’s seats.

We drove home following the concert so we could rest as we needed to and wake up at home.


This year in addition to Kristen coming home one of my younger sisters joined us. Family gatherings are much smaller on my side of the family so Dominique was thrilled to be part of the 30 or so people who gathered for a Bullock Thanksgiving.


Dominique with her beloved dog, Sophie

The weather was gorgeous just up until the afternoon of the Thanksgiving Dinner (whereupon it clouded over and started a drizzle/rain for the rest of the day). Following is a picture I took on the day before our dinner. It was very warm and sunny and so perfect to relax outdoors.


This was our backyard on the day before our meal. Warm and fabulous!!

There was no rest for those of us cooking for the dinner! With approximately 30 people arriving to enjoy a meal together everyone pitched in by bringing something for the potluck. My choices weren’t as popular; so for the next time I will make other things. This year I made devilled eggs and a peppermint pie while John made oven roasted potatoes and sausages.

Dominique dazzled us with her meat pies (Mathew has now banned John and I from making our usual chicken pot pie in favour of her pie…) and pumpkin pies. A few people were so enamoured of her pies that they disappeared after the dinner to places unknown. I’m hoping for a piece at Christmas when one of the pies shall make a reappearance.


Someone at my place working away at making dessert


The pumpkin pie filling was delicious!

Christine did a wonderful job decorating the Meenan’s Cove rental building. Her and Harry had the brilliant idea of renting the place for the day so there was room for everyone to sit at one very long table.


Décor at dinner

Christine and Harry went in early on the Sunday to start setting everything out and to put the turkey in to cook. The place could have held a lot more people; the kitchen was big with a fridge and a commercial fridge to hold all the food (and beer, etc). There were bathrooms located right there for easy use. Everything was clean and bright with everything needed for a party ~ right down to eating utensils!!


It tickled us all pink to see a menu Christine made for our dinner.


We even had a menu!

Here is a shot of the kitchen and you can see all the room for people to cook and move around. Starting a while before dinner people arrived, bringing their food and either helped with preparations or moved around to say hello to everyone.


A pre dinner chat in the kitchen area

When I first arrived Alistair was mashing potatoes in the kitchen and Harry was prepping other things and keeping an eye on his turkey. There were actually 2 turkeys prepared as well as a ham. Add to that a large variety of sides and everyone had a plate full of delicious food to eat.


Alistair and Harry working in the kitchen

John and Andy enjoy small talk before the meal. I’m not going to say that Wendy and Andy were the last ones to arrive because this year that honour went to one of their sons! Thank you kids!!


John and Andy pre-dinner. I hope you didn’t forget something Andy!

This turkey looks delicious. As I write this post at some ungodly hour of the morning I can smell it again and want to eat some more of it. Very much. I’m starving now thanks to these pictures!!


Harry starts to carve one of the tasty turkeys

The line up took a little bit to get through but everyone was in good humour and we all knew there was plenty to go around for all. In this next photo some of the ladies chat as they get ready to move along to select this year’s offerings.


Part of the line up for the buffet-style dinner


One half of the table. Yes that is Mathew…sigh…

I was the last one to go through the line up. I went once to fill up a plate for Mathew and then went through again for myself. By the time I sat down and starting eating I forgot to take photos for a while! I did manage to take a few and this is one of Alistair thoroughly enjoying his dinner. He wasn’t eating by himself either – there was no space for that! I tend to crop photos; Alistair was sitting beside his Mum on one side and my sister on the other.


Alistair contemplating the great meal we had

Everyone did something in preparation or clean up. Gentle reminders went out for the younger generation to pitch in and they all did. I’m probably one of the few who didn’t clean up and I do feel guilty about it. I was exhausted; I’d had four hours sleep and Mathew was sitting next to me at the food table. He’d let me know in no uncertain terms that if I left him for whatever reason, he was going to be a very unhappy, LOUD person in a hurry. So to keep the peace and him happy, I stayed in my seat.


Some of the ladies do a bit of clean up

In between fetching meals, dessert, drinks, etc, I was able to snap a few pictures but wish I could have taken many more. Here are a few I did get:

Harry and Christine ~ the masterminds behind this wonderful dinner at this fabulous place. Well done you two.


Harry and Christine

Jean and Harry (Mum and Dad/Nana and Poppa to almost everyone here) having a conversation with Boyd.


Nana and Poppa with their youngest son, Boyd

Callum and his sweetie Ismini. Don’t you LOVE that name? This gorgeous girl is from Greece and lives in Nova Scotia. Next time she heads overseas to visit her father some of us Bullocks may squeeze ourselves into her luggage!!


Ismini and Callum

Hannah and Ben. Ben is 6 months older than Mathew. Hannah and Ben purchased their first home this summer. When we visited about a week or two later their place was.completely.unpacked.and.decorated. I couldn’t get over it!


Hannah and Ben

Here is one of Ben’s brothers, Sam and his girlfriend, Jenna. Both of them have jobs; I believe they are working full time hours are their jobs PLUS they both go to University. Sam will complete his degree in a couple of months. His was a long haul as he first started out in a co-op program that added time to his school completion date. He showed everyone the countdown to graduation on his watch!! Way to go you two. You will never have this much energy later so get it done NOW!!


Sam and Jenna

Here is our Kristen rocking a photo with one of her Aunties. She loves being part of a big family (both of them do) and they both enjoy seeing each other when Kristen comes to town. So long as it isn’t the long weekends in summer. When Wendy takes off with Andy and Ella in their camper.


Kristen with her Aunt Wendy

Of course, no gathering is complete without being present on social media. I know you guys would think I was making all of that jolly dinner up without the following “real life” photo…


I can’t resist just one more picture….

Sorry my nieces ~ I couldn’t resist!

I missed taking photos of so many other people at the dinner and I regret losing the opportunity. It isn’t often we can all get together, what with work and school schedules. I must note that we did miss one person who couldn’t come this time, my nephew Grayson. We missed you and hope your Thanksgiving was good.

On Thanksgiving Sunday Mathew was up for a marathon 20 hours; this after sleeping for 21 hours straight prior. He left the dinner with John; we generally take both vehicles just in case someone needs to leave early. So John and Mathew went home and Dominique and I followed a while later. Mathew fell asleep shortly after I got back. Kristen went off to visit some more with her cousins.

Good memories were made by all and Dominique was thrilled to share this large family gathering with us.


Now I have to say I typed an entire post before this one and somehow lost it. I didn’t throw the computer across the room in frustration because the boys are sleeping. This is a rare night when Mathew is actually sleeping through the night while my skewed internal clock can no longer tell me what time of day it is!! Checking the computer I see it is 4:30 am so I am going to sign off and get some sleep.

Everything is Same-Same

The xrays of Mathew’s lungs were normal. Good news!

The family doctor and I chatted about terminal cancer vs palliative care. Mathew right now is terminal, not palliative. We know he has cancer, it is growing and there will be no further treatment.

This terminal state is the unknown variable in terms of time left. During this time, Mathew’s symptoms are treated. There won’t be further tests because they aren’t needed…. I’m still having difficulty with that one though. I want to see what is going on in his body! Are those wretched tumours growing very slowly? Are they in other places in his body? What kind of time do we have? This “treating the symptoms” is very hard on all of us.

The last time Mathew was out of the house was over a week ago. I went out briefly, earlier this week, and that was it. Today I officially morphed into cabin fever status and tomorrow. Anywhere. Anyhow. Just out and that means beyond our deck! I plan on dragging Mathew out with me and told him so. It could be a movie or dinner out…I don’t care ~ just let me OUT!!

This is our first weekend in a while without guests. It is a good time to take a breather since next week is a concert John and Mathew are attending in Moncton. If Mathew is well enough. I’ll be the getaway driver; hanging out in the truck and ready to make a quick drive-by to pick them up if Mathew feels too sick to stay for the entire event. Please don’t feel sorry for me. I prefer sitting and snoozing in our truck to attending this concert. I’m not sure who “Five Finger Death Punch” is but I listened to a little sample of their music and the truck and a book look pretty good to me!

So…have I mentioned Mathew’s days and nights are messed up? I think I did say something in the last post. I stay up with him through the night and go to bed when he does; around 6 in the morning. I’ve seen more consecutive sunrises and sunsets lately than I wanted to. It isn’t an energy filled fun night people, so I’m not cooking up a storm or deep cleaning the house. It is more like a continued stupor and not sure of the day or hour anymore.

This time is a hard one to live. I can’t put into words how it is to watch each minute go by, wondering how long this terminal phase is going to last. A couple of months? Several? A year? Life remains on hold and you just wait. Wait for something. It’s coming and you don’t want it to.

You don’t make plans because you don’t know if you can. You don’t do anything on a “regular” basis because there is no regular. Mathew’s health and how he is feeling changes on an hourly basis so whatever you end up doing is a last second, mad-dash-for-the-door event. Then, when you are out doing something you have to be prepared to drop everything and return home on a moment’s notice when Mathew suddenly tires out or feels sick.

In other news, Kristen won a job competition and moved from a casual position to a term position. This is a positive step forward as she is entitled to health and dental benefits. It meant a pay increase which sweetened the pot too! Two weeks ago Kristen moved into an apartment with a roommate and was busy buying her first bedroom furniture. Her roommate already has furniture from previous apartments so they seem to be all set. She is very excited about having her own place ~ and our thanks go out to my younger sister, Dominique, who accommodated Kristen in her home until our girl was ready to go out on her own. Dom, you made the transition so much easier for Kristen and us! Thank you!!

As it is now 3:30 am I doubt this will make your top choice for a well-written and well-thought out post. It was either a quick scribble when I could or a prolonged silence.

I find it hard to write at the moment. There are so many thoughts and emotions running through all of us and underlying exhaustion to add to the mess. This transition period is the precursor to palliative care which, I’m sure you know, is the end of life stage. I am simply not able to put into words all the things running through my head.

Good night and good morning!

Small Changes

I am off work, on compassionate leave now. The Government gives 26 weeks off to care for a family member who is gravely ill and has a significant risk of dying within 6 months.

John and I noticed a small change in Mathew’s daily routine ~ enough to make me want to be off with him. I’d rather be too early than…well, let’s just say too early.

Mathew’s appetite isn’t what it was even 3 weeks ago. He is sleeping more and needing more morphine. Another symptom started about 2 weeks ago; his chest hurts and he says it is harder to breathe.

So far his lungs sound normal but the doctor did say there is no way to tell if his lungs are working at capacity any more. He had an xray yesterday and we shall hopefully get results this Friday. There is a thought perhaps he has pleural effusion in a lung or both. It could explain the pain he’s experiencing.

Mathew’s schedule is his own now. We quit the sleeping pills for him because they weren’t working anyway. Even at the full dosage and trying a second prescription nothing made him sleep!! After several weeks of giving him sleep medication only to see him stay awake all night was enough for me to toss them aside!

Right now Mathew doesn’t have a lot of interest in leaving the house. It is taking around 5 days to get him to even think about going out. So we hang out in the house, alternating sleeping and tv or internet. Thank goodness there is a great selection on Netflix and in the movie department!!

With our crazy schedule it is hard to keep up with this on a daily basis. I’m not seeing a change in Mathew’s health daily yet either which is a GOOD thing! The extramural nurse was in today and we went over the list of things to watch out for. There weren’t many checks on the “progressed” side of the page.

Extramural is going to look at what options there are for a hospital bed for Mathew. When they know what is out there they will give us the information and when Mathew’s breathing becomes more laboured we will consider it then. Mathew still wants room for us to hold his hand or hug him.

Right now Mathew is eating 1 to 2 meals daily and often not a lot. Time will tell if this is a new permanent change. He is a bit more selective in his food choices and often will turn down or leave food alone.

We are also looking into whether or not his power port needs flushing anymore. I think Dr. Burnell wanted it left operational in case Mathew opted for more treatment. Palliative care does not use the port for any reason so Mathew might be excused from further monthly flushes. He just had the port flushed yesterday and being at the hospital stressed him out again; even with an Ativan to keep him calm. The idea is to minimize any hospital trips unless absolutely necessary.

So I’m hoping the xray won’t show any fluid in the lining of his lungs. I will let you know after we find out.

Thanks for hanging in there with us!

Summer Marches On

Well it has been a while since I last posted. Things are going as always which means everything is ok.

We’ve been busy with Mathew; visitors popping in and us taking little day or weekend trips. We took Mathew to Bangor 2 weeks ago and it was rough on him; he spent half the time in bed, in pain. He did manage to get a bit of shopping in and found some items he wanted. It wasn’t like the good ol’ days though when we shopped till we dropped. I managed a side trip into a curtain shop and spent a heavenly hour or two in there just admiring the selection. We also managed to eat a couple of good meals, one at Applebee’s, a second at The Texas Longhorn, and a third at a small place called Evolution Burger. It serves organic, grass-fed beef for its burgers and the meals were very good. It was a long wait to get the food however ~ I suspect they might have been growing the grass to feed the beef, etc.

Yesterday we drove up to Fredericton and had a lovely visit and meal with Alistair and Denise and company. We had promised Mathew a quick trip to Toys R Us at the mall there but as our luck goes, a wicked thunderstorm scuttled through and blew some big transformer that knocked out power to the shopping area of Fredericton!

Kristen has been home twice since I last posted, basically every long weekend. She takes an extra day now so we get a bit of a longer visit but the time goes by too fast. Mathew likes it when she’s around and misses her, as do we all, when she leaves.

John’s father had a mild heart attack…not exactly sure when as he thought the pain was related to indigestion. It took a bit of persuading for him to finally get checked out. It turns out one artery was 99% blocked and a second was at 90%. He got himself two stents and went home two days after. The upside to this is we now know his heart is in good condition and will work for a long time yet. Seriously folks, the hospital would rather be the one to determine if the pain is heart burn or if it is a heart attack. Let them check you out ` at worst, it might be embarrassing (big deal guys!) and at best they head off something that could be a significant event happening.

I haven’t mentioned yet that we lost our last pet a few months ago. It was discouraging when we put our cat, Spook down. He was 16 years old and had literally gone bonkers. It was depressing and not something I wanted to talk about on here right away. I think it was in February that Spook went off to animal heaven.

After Mathew was told there is nothing more that can be done to stop the progression of his cancer, I asked him (a couple of days later) if he wanted to pick out a cat. He did. He wanted to rescue a cat from the SPCA and so we visited them and found Gimley. Gimley is about 6 years old, is a male tabby (neutered of course) with green eyes…slightly crossed. He had been hit by a car and left by the side of the road for at least a day before anyone called the SPCA to report him there. Gimley had a broken leg, a squashed paw and I don’t know what else. This was back last December and his mandatory cage rest made him a beefy guy. I mean so big my eyes popped out when I first saw him! His name at the SPCA was Essex but Mathew renamed him Gimley, after the tough, little dwarf in the movie, “Lord of the Rings”. Gimley is an affectionate, friendly guy who definitely likes his food! He often sleeps on Mathew’s bed at night which brings Mathew comfort.

Mathew had his hair cut and dyed bright pink a month or so ago. He figured if not now, when? The colour has faded enough that now he is thinking he might go for a brilliant green. Or blue. I take him to hair dresser for this; he likes the attention and I like a professional taking care of it!

The Palliative care doctor and nurse (from Extra Mural) did come to our home and start Mathew’s file. For now the nurse stops in every couple of weeks to monitor how Mathew is doing and to address any concerns that may have cropped up. We did go in to see Dr. Burnell and to say we didn’t want to bring Mathew to the hospital anymore than absolute necessary. This leading to our not seeing Dr. Burnell anymore. She certainly understood the distress the hospital causes Mathew and the wait to see her (her appointments run chronically late). I don’t know who all plan to be involved in Mathew’s care when things get bad but until then, the family doctor and the palliative care nurse can manage. Every month though, Mathew will still get his port flushed. Dr. Burnell requested this and I expect it will be used to manage symptoms when the time comes.

We have had a few bonfires this year. I enjoy them and so does Mathew. John drives him down into the backyard in the truck and then back up when Mathew tires out. We usually have people join us and it is such a nice time. The last one we had we ended up sky-gazing; shooting stars, satellites tracking overhead, airplanes. What excitement from our very own backyard! The roasted marshmellows, chips and drinks help too.

I find it more difficult to talk about Mathew dying. I spend as much time with him as possible, trying to memorize his face, his smile, his voice, his laugh… and it hits me harder each month that goes by. There is grieving now for what is to come. I can plan and talk all I want but when reality slaps my face I know that I just cannot yet truly imagine how awful the grief is going to be. I can’t talk about it. It makes me cry and I don’t want that right now. I want to enjoy here and now.

Sometimes I think my posts come across airy and nonsensical. I am a person whose feelings run deep and when I re-read something it looks cheap and fake. I also don’t have a lot of free time where I spend it on the blog, but I am trying.

Today’s post I am not even proof reading or rewriting like I usually do. If I did that it wouldn’t get out to you and I know some of you are waiting for an update.

I joined Facebook groups about Ewing’s Sarcoma. I have already reached out to some mothers who lost their kids to this cancer and asked them to stay close because I will need their support when the time comes. They will understand the best of what I am going through and how to get through life after Mathew is gone.

Quite frankly I don’t want life to continue after him but it will. There are others whom I love who are dealing with their own health issues and it is just lucky that I’ve lived this long without significant sorrow or people passing away. It isn’t a place I would wish on anyone and it just feels like a lot to absorb at once.

On that less than cheery note I must get to bed in preparation for another working week. Mathew is very angry that I’m working and he goes between angy comments and tears. It is enough to rip your heart out.

Time Marches On

Sometimes I can kid myself that we are still living normal lives.

Then I get another punch to my gut.

Yesterday the palliative care unit at the hospital called to arrange Mathew’s first visit with the pain and symptom management specialist on Monday. The palliative care doctor likes to visit in the home so she is coming here to open his file and start the paperwork.

It is important to have this underway before Mathew gets sick or exhibits worsening pain so action can be taken immediately. We also have to go over end life instructions, like the DNR order.

DNR is short for Do Not Resuscitate, in the event that Mathew’s heart stops. Apparently without him instructing the hospital on his final wishes any family member can force the hospital to take extreme resuscitate measures… something to do with the hospital being concerned about lawsuits. Can you imagine? I hope every single family member reads this because the instructions will be there and will be very clear.

I have to be clear about this right now. Mathew and then John and I have the only say in how the end comes. If anyone even thinks about stepping in to challenge any of the decisions there will be hell to pay and I will make your life miserable. I’m just saying. I cannot imagine any member of the family, after watching the effects of this cancer on Mathew, wanting to prolong his life if this cancer takes over his body and causes it to shut down.

So this along with the first “after treatment” appointment with the Oncologist coming up shortly, is a stark reminder that the clock is ticking. It hits me and cracks the veneer that I carry out daily life with. I get a glimpse of our future and fall apart.

I realize that it has been a month, if we are seeing Dr. Burnell again. A precious month has gone by…one month already, how can it be? I want time to stand still! I don’t want another day to go by!

One day something will happen and my façade is going to shatter. I will not be able to function after that. I already know I won’t be able to work or do anything but pull myself together enough to see Mathew through his darkest days.

In the meantime I hang on to every precious moment we have. I enjoy ever banal moment, whether it be watching that wretched wrestling yet again, or listening to his extensive repertoire of music. I want to hear every word he says and I want to remember all of it. I want, after grieving if at all possible, to be thankful for the gift of having Mathew as my son and for having this time together.

A Good Day!

We had our first bonfire last night.
It had been tentatively scheduled about a week or so before but with our weather lately I wasn’t sure it would happen.

Mother Nature looked kindly on us and it was a beautiful, warm day. My sister-in-law Linda and her kids were in town for the weekend (to celebrate Father’s Day) and most family were able to drop by. Alistair, Denise and Sara popped in during the afternoon but couldn’t stay for the evening ~ and we missed them!

We missed the other family members who couldn’t be there and I definitely thought about Kristen. She was enjoying herself in Ottawa so I hope she doesn’t get too homesick looking at these pictures I’m putting on below.

Mathew participated for the whole day once he woke up. His cousins Grayson, Callum and Jack came over shortly after noon however Mathew was still sleeping. They went out on the lake with the canoe and kayaks for a couple of hours. The sun was intense enough to burn a few shins where the suntan lotion didn’t get slathered on… the lower legs kind of looked like cooked lobster and hopefully the boys aren’t in any pain today!

By the time the sun set the first bonfire of the year started and we gathered around the firepit. This first photo shows Harry’s jeep by the fire; Poppa and Mathew both got rides down the side of the house to the backyard; neither could manage the stairs well and so they got a lift down and when later on, back up to the front of the house.


Harry dropping Mathew off at the bonfire

John is bringing some more chairs down off the back deck to go around the fire. In the background, Jack and Connor are preparing to take the canoe out on the lake for a paddle around. They were out there for a while and appreciated the warm fire on their return.

In this next picture more chairs are fitted around the firepit and Harry is parking the jeep off to the side.

This is our backyard. We are about a 2 minute drive from the main street in the town we live in and a fifteen minute drive from the city of Saint John. It is my favourite hang out back here where I can watch all the wildlife go about their business.


Family gathering around the bonfire


Sitting around the bonfire

Once the sun set it chilled off quickly. We pulled a bunch of blankets out of closets and brought them down to wrap ourselves up. It was a beautiful night – no clouds and a full moon. That is Poppa and Nana enjoying the get together; we celebrated Father’s Day a little early since a lot of us were present with Harry Senior. Jean/Nana and Harry Sr/Poppa are the greatest in-laws and grandparents you could ask for. I was so pleased they were able to join us.

The seat with the blankets piled on it is where I sat, next to Mathew. Ben and Hannah are to the left of my chair. Ben and his girlfriend, Hannah, purchased their first home about two months ago. Can you imagine? They bought a beautiful two-storey home and had a welcome bbq about 2 weeks later ~ and everything was put away, no boxes strewn about…and it looked like they had lived there for a few years already!


This handsome guy is our nephew Connor. He joined us after his work shift ended. He ended up sitting at the receiving end of the smoke until we noticed his discomfort and shift all the chairs over so he could get out of the smoke. It wasn’t until later that evening when I walked through the smoke myself that I realized how potent it was!

I’m not too sure what John and Harry have going on at the Jeep behind Connor. John was probably dissing the Jeep again; all in good sport though. Harry makes fun of our Honda Ridgeline and John likes to repay the compliments. For the record however, both vehicles handle the hill at the side 0f our home just fine!

DSC_0951John checking on everyone and the fire. You can see the full moon rising just above our deck. The night was lovely with a clear sky and full moon but it got downright cold once the sun set!

The two younger ladies that look thrilled in the back there are two of our nieces. True to today’s youth we could see them on their cell phones throughout most of the evening. They did roast some marshmellows for willing recipients before retreating back to warmth of blankets.


John enjoying the fire

Grayson in profile. Behind him is Callum. I was trying to take a picture, unnoticed by either of them but that very slight red light you see is something in my camera bouncing off of them giving me away. Rats. I’m going to have to explore all the functions on my camera more closely!


My brother-in-law, Andy, enjoying himself. He grew chilly last and I asked one of the nephews to grab something from the house for Andy to warm up. I suggested checking Kristen’s room for blankets, etc as that was closest for a quick search. He brought the sheets of her bed and Andy got the lovely pink one! He is always a sport about these things and after I took this photo he actually pulled the sheet up and made himself a pink ghost! I’m not sure if his daughter, Ella, noticed ~ or what she said if she did. She’s a teen now and antics like that can be a little embarrassing to a young lady. I thought it was funny.


Andy in all his pink glory!

The party broke up around 11 pm. In this photo (below) Harry is driving Mathew back up to the front of the house. It is one level on the front so Mathew doesn’t have to use any stairs. When we purchased the bungalow, walk-out basement we never dreamed how it would ease our life when Mathew got cancer in his spine and couldn’t walk very well!


Harry driving Mathew back up at the end of the evening

Earlier in the day just as the three nephews first showed up, John and I had been discussing putting the sun gazebo up on the deck. It hadn’t been warm enough prior to yesterday and luckily for us, three strapping young men showed up in the nick of time! They helped carry the parts up to the deck and then helped build it. Everyone spent the afternoon and early evening sitting under the shade it provided and it felt like summer finally arrived.

Yesterday was such a welcome reprieve from the heaviness that our hearts have during this most difficult of times. The poignancy of the day was not lost on John or I and probably not on anyone else either. We are aware, Mathew included, that with the prognosis of months to live, he might not be here to enjoy this next year.

It makes me treasure these moments ever so much more. I am so grateful for family and friends who are stopping in to visit. It means a lot to Mathew and he is well enough to enjoy it.

Good night all and Happy Father’s Day to my side of the family ~ I hope you were treated a little extra special today.

It Doesn’t Get Easier

Tomorrow is one week since we learned of Mathew’s latest scans.

With each person we tell the news gets harder to bear. It becomes more real every time I hear it. The future presses on us with time remaining growing shorter each day.

Life gets shorter for each of us with every passing day but it doesn’t seem as imminent as Mathew’s end date.

I got a ruler out today and looked at 1.4 cm. It’s big…way too big for just a few months’ growth. Put that one together with the other ones growing in the left lung and you realize the cancer is starting to cover too much space.

It hit me like a wall of bricks that he won’t be here too much longer to share my day with. To watch a movie with or hang out…

Oh boy. It’s harder than you can ever imagine.

Weep With Sorrow

I haven’t posted for a long time and for that I apologize. Many events have kept me/us busy and I will get to them…just not today.

Today I tell you the results from Mathew’s last scan and our follow up appointment with his Oncologist.

It isn’t good.

Not at all.

Mathew is done treatment and nature will take its course. As Mathew asked during the appointment, “Does this mean I will die?”

Yes, Mathew. I answered. My heart breaking.

In months.

The old tumours grew and there are new ones in his left lung; now in more than 1 lobe. One new one, not previously seen, grew over 1 cm since his scan (that was in March). Mathew’s Oncologist told us these tumours tend to grow exponentially. For those who aren’t sure what that means…. it means it grows faster and faster. It gets big fast. Ewing’s Sarcoma is a hell of a nasty cancer people and there is just no way around that.

There are no new treatments found in the last 30 years. Less than 3% of money raised for cancers goes towards pediatric cancer.

How would you feel if this was your child?

I know you want to help but sadly, there is nothing you can do. We appreciate the thoughts, prayers, etc, but it is not helpful to tell us he will be with God soon or that his pain will be over. We are not religious nor do we believe in God. Do not tell me to hope for a miracle. There won’t be one. Don’t tell me to be positive or to look on the bright side. I will tell you to go to hell.

Just BE. Be around, visit Mathew, continue life. Life will go on both now and “after”. I don’t want it to but I know it will. Be thankful your life is going well, I am so happy for you ~ I would not wish this on anyone. It is few and far between who are not touched by sadness and or tragedy at some point in their lives so I am honestly happy if your situation is good. I want it to be.

Mathew is okay. He wants us near him and to hold our hand when he gets scared; which is when he goes to sleep. He is talking about it, worrying about you and his friends… he is free to talk about whatever he wants. There are resources in place for him and his family doctor and Oncologist are continuing care and will bring in others as needed.

We are functioning, some hours better than others, some days more than others. We want to plan little day trips and visits to keep Mathew’s spirits up for as long as possible. He will continue to see movies, visit friends, etc, until he is not well enough to. So don’t be shy! It’s okay.

It’s okay to cry. But not in front of him. He doesn’t want you to.

Now I’m going to go and hang out with my buddy.