Profound Sadness and Extreme Joy Can Co-exist

It has been a long and exhausting week for Ben, but finally he received a blood transfusion in time to attend our son’s graduation.  Unfortunately, the transfusion was too late to provide him with any real energy for the occasion and he needed to use a wheelchair, but at least he made it.  (On the plus side, we got rock star parking and got to bypass the line, which is always a good thing!).

Here is what some of the evening looked like

And then there were these people who showed up to celebrate alongside Zak.  The handsome fellow second from the left is Peter.  Peter saved our son’s life.  Simple as that.

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Pete…if you are reading this, we want you to know that we owe you everything.  You not only gave us our son back, but you gave us the best version possible. (I have considered the fact that you may actually possess some weird voodoo power, but at least you aren’t using it for evil so I won’t investigate).

You have given Zak what he needs to make it through this difficult time in his own life, and because we have our son back, the rest of us are also able to face this challenge with one less worry.  United.  As a family.  We would never have had that without you.   We truly can never repay you for what you have done.  Thank You.

So after the Commencement ceremony was a grad party, and then the next evening (tonight) was prom.  By the time Zak was ready for prom, the sizzling Latino vampire blood that had been transfused into Ben yesterday was finally kicking in and giving him some new found energy.  Which resulted in this:

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And this:

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And then just because we are so super proud, I’ll add a couple of these:

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(Pay particular attention to those smashing purple socks in the picture above)

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(Boutineer courtesy of Mama)

So there you go.  Watching Ben in constant pain breaks my heart, which was made worse when he was so low on energy.  But watching our son close a chapter on his life and step forward to start a new one filled me with joy.

As a parting note, I will point out that by 7pm tonight that donor blood was doing such a number on Ben that he asked me on a date, and off for Thai went we.  Check out the color in his face now!  He’s baaaaaack….


Hug your families.  Xo

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Father’s Day

I savour the little moments we can steal as a family when Ben has energy.  This Father’s Day was not about purchasing gifts that no one really cares about anyway.  It was just about finding ways to show our love for each other.

Zak, Jaime and Raegan each wrote beautiful, loving letters to their Dad.  I knew they were writing them, but I didn’t know what they said until they gave them to Ben.  I will not share them on this blog, but they were beautiful.

Ben has been extremely exhausted – asleep more often then he is awake.  It took me five tries to get a Father’s Day picture with his eyes open, but here it is:


Today I took Ben to our GP, and he had a blood test to check his hemoglobin.  Our doctor believes that it is likely that Ben’s red blood cell count is very low and that he probably needs a blood transfusion.  Unfortunately we did not have the results tonight, so we will wait until tomorrow and then (assuming our doctor is right, which I believe he is) we will go back to the hospital to get that done.  Dr B says Ben will feel better afterwards.  So that will be nice.  It’s hard to “move forward” when he can’t stay awake.  Yesterday he fell asleep and slept right through his medication alarm when I wasn’t here, which concerns me about leaving him alone.  The kids are great with helping, but we want them to go live their lives.  So we will all feel better when Ben has more energy.

On a happy note….today Ben received a card in the mail signed by his troop mates, and in it was a picture of one of them who had shaved his head as sign of solidarity.  That made Ben smile…especially because Andre still has all his hair when he’s not shaving it off.

Hug your families. Xo

Cancer Isn’t Cheap – Shout Out To The RCMP!

This happened on Wednesday:

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Yes, Ben came home to continue his recovery surrounded by those he loves most.  Indeed, I am referring to his guitar collection. Hahaha.

It was a mad scramble to get things ready for him in less then 24 hours.  We had excellent care in VGH, but I did mention to the nurse upon departure that I can’t imagine what it must be like for those being suddenly and unceremoniously discharged from hospital if they aren’t of the personality to push back a bit and dig for information about how to best meet their needs at home.

Lucky for us, we have a wonderful friend who is an OT by profession and just an all round great person on the side.  In less then a day she arranged for the delivery and set up of all sorts of equipment in our house such as:

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This gives Ben the ability to get in and out of bed each day.  And this:

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Which gives Ben a reclining chair for comfort, when the dog hasn’t adopted it.  (Don’t you just love Timmy’s sly smile here? He is taunting Ben.)  In addition, we have a second wheel chair that folds up and can be put in the van, along with a wedge pillow to help Ben sit up and a bed rail to help him roll over.  Ben has found that he doesn’t so much need the wheel chair in the picture after all, as he is able to get up and down the stairs to our bed, and he is finding that he can get himself off the couch, which he was concerned about before coming home.  We are going to send this wheel chair back, I think.

As you can imagine, all this equipment doesn’t come cheap, and once again we are so, SO blessed with being surrounded by really wonderful people who care and work hard to get Ben what he needs.  Our employer was nothing short of amazing (and I don’t actually say that lightly). Not only did they approve every piece of equipment he needed, but they waived their usual referral and just ‘okayed’ everything via email.  If you are familiar with our organization, you will understand what a big deal that is – NO PAPERWORK!!!  Then the supplier (mostly due to Paula’s working relationship with them, I’m sure) agreed to direct bill our employer instead of requesting the money up front.  That also takes a lot of extra work off my shoulders, as I no longer have to do any running around to do or completion of paperwork, and I don’t have to wait 8 weeks for reimbursement.  We are very grateful for this at a time when we are counting pennies and are happy to not have the additional burden of finding time to submit forms.

Ben came home with several prescriptions which we dropped at our usual pharmacy.  One of them was for life sustaining injections of a form of Heparin to keep Ben from forming any more blood clots, which would not only require another hospital visit but would threaten his life as well.  After 22 years each in our organization, we have gotten used to Cadillac Health Care and the benefit of being able to walk in and out of the pharmacy with all our prescriptions filled at no cost to us at all.  So you can imagine our surprise when the pharmacy called back to inform us that this particular (and extremely necessary drug) was not covered by our plan.  And, it costs $1130 / month.  AND Ben may be on it for life.

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Needless to say, that threw us into a brief panic, followed by some tears and a flurry of emails, followed by the offer of financial assistance by my parents yet again. (what would we ever do without those two AMAZING people, and seriously, how did we ever get so lucky???!!  How we love you, Mom and Dad. There are no adequate words.)

In any case, the staff at work jumped in and helped out – contacting the specialist to determine if there was a different injectable blood thinner Ben could take that would be equally effective as the one she originally prescribed, but that is covered by our supplemental health care.  In addition, the staff also contacted Ottawa immediately to ask them to review this drug and explain why it is not covered (although, that will probably take months, as those of you in ‘the know’ will have experienced yourselves in the past.  lol).  I really appreciated her efforts though.

At first the specialist responded that she did not believe she would recommend any other form of the medication for Ben, as the one she prescribed is specifically for those with impaired kidney function.  However, later in the day she decided to issue another prescription for a different medication that needs to be injected twice daily (poor Ben – one extra needle a day) but that is covered under our plan.  This medication still requires special approval for coverage, but the details of that is being taken care of by Health Services so we don’t have to get involved.

In the meantime, the specialist left 10 free injections at VGH for Ben to carry him through until this whole matter could be straightened out, so he will get the original prescribed injection for almost two weeks while approval is sought for the other twice daily medication.  Never thought I’d be so happy for ‘free’ meds!  That also buys us time to talk directly to Dr B and to the specialist to ask questions about the effectiveness of the ‘free’ injections vs the original prescribed medications.  Obviously we don’t want to compromise Ben’s recovery, but …. $1130 / month?  Ouch!!!

Ben is quickly beginning to regain some strength through proper diet at home.  He is beginning to eat more and of course it is as organic as possible and no sugar other then what comes naturally in fruit.  He still tires easily, and last night he slept from 8pm until 4am.  It is hard on the kids to see him in this state, but I have explained that the surgery was very significant and it will take him time and good food to get back to ‘normal’.  It makes me sad to see their faces when they talk about him.

Ben has a few weeks of recovery here where he needs a lot of care, and then we will be off for the next CT and meeting with the Oncologist.  At some point within the next few weeks we will also meet with the surgeon, and on Monday Dr B will remove at least some of the staples in Ben’s stomach.  So we will have a busy few weeks but they will be punctuated with some awesome times, like Zak crossing the stage to receive his diploma with 500 other grads, and then heading off to prom.  I can’t wait to see him in his suit. Also, Jaime will be off to Kamloops for several days of intensive volleyball training, as she was selected to play in the Baden Cup.  So was Raegan, although her age group remains in the Lower Mainland.

So, despite the setbacks and challenging times, I continue to be inspired by the kindness and generosity of others.  There are more good times then bad.

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Have a marvellous day, and hug your loved ones. xo

PS.  Thanks to Nancy and Jeremy for the beautiful flowers!

Mike O’Brien

Mike O’Brien (Canadian Actor – Corner Gas as Wes Humboldt) wrote the following obituary for ‘cancer’ (still no capital ‘c’) in the hopes that one day, a date will fill the blank and the obituary will reflect the truth.  I love it.

DON’T REST IN PEACE

On ______, our good friend, Cancer, passed away.

After a long, courageous battle with medical science, Cancer finally couldn’t fight any longer, and succumbed to the efforts of researchers who plagued it.

Cancer is mourned by the Spanish Flu, Ebola, AIDS, Parkinson’s, Alzheimer’s, and the bird flu. He is predeceased by the plague and the Spanish flu.

Honorary pallbearers are asbestos, the tobacco industry and many other carcinogens, too numerous to mention here.

While to many people, cancer was an odious dusting of dog shit on the sole of humanity, we knew a different cancer. Yes, he could be opinionated, stubborn and fatal. It’s true that, even now, millions are celebrating in the streets at the demise of this cowardly, mean-spirited and reprehensible creature.

But we knew a different cancer. A world traveller, a mal vivant. Cancer touched so many lives. He always said he was most proud of how many people had met and affected, for better or worse but, obviously, mostly for the worse.

His childhood was a happy one, when his nicknames included  ‘Suspicious Mole,’ ‘Biggie Lymph Node,’ and ‘Lumpy.’ It was in adulthood, in the 20th Century, when he truly made a name for himself. Cancer’s popularity exploded during this time, and he was always surrounded by so many of his favourite tumours.

Cancer wanted to say a fond farewell to radiation, surgery and his long-time ‘frenemy’ chemotherapy. They butted heads with him constantly but he respected them, and even said they made him stronger in many ways, as he learned new techniques in response to their efforts.

Cancer’s actitivites slowed in recent years, thanks to thousands of researchers and doctors, and the efforts of fundraising foundations around the globe, who he often said “made the road bumpier.”

Special thanks our friends in the tobacco industry, who did so much to help Cancer throughout his career.

What a selfish piece of shit.

—  Mike O’Brien, May 4, 2015

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As for Ben, he is slowly recovering from the surgery.  He has now gone a full week without food, so as you can imagine he has very little energy.  We are trying to get him to start eating, but the days of vomiting right after having his stomach cut open have taken their toll, and he is afraid to have much food.  We are working hard on getting his energy levels back up.  Today he was able to walk down the hall and back, and sit in a chair for about ten minutes before needing to lay back in bed.  That was an improvement.  Small steps.  Yesterday we took him outside in a wheelchair for some sunshine, which he enjoyed.  Today he didn’t have the energy for it, but we’ll try again tomorrow morning.

His NG tube was removed this morning, however his PPT (prothrombin time – the measure of time it takes his blood to clot) has been too low with each blood test.  Basically…despite taking Heparin to thin his blood, his blood was still too thick.  We met with one of the doctors today who was trying to figure out why Ben wasn’t reacting properly to the Heparin.  After about 5 minutes of asking questions she finally asked him how much he weighed.  Ben answered 240 lbs (in reality he is now 230, down from 250 when he entered the hospital) and the doctor said, “Well there’s the answer.  They have been giving you a Heparin dosage based on 180 lbs.”  Duh.  Really?  As flattering as that is, Ben is nowhere near 180 lbs, and I hope to God he never is.  So they have adjusted the dosage again and hopefully now it will work.  When he comes home we will have do injections of Heparin into his stomach for the next few months.  Small price to pay.

In addition to the blood clot, Ben has teetered on the edge of getting pneumonia for the last couple of days.  His lung is crackly, so we have been working hard on getting him to breathe deeply and have conversations with people.  The problem is that he often falls asleep when people are trying to talk to him.  Ben and I have taken to practicing yoga breathing when he is sitting in his chair (5 seconds in, hold for 2, 5 seconds out).  The problem is that he only has the strength to get in the chair once a day. Maybe twice on a good day.  I don’t know if that is enough to keep that pneumonia away.

He has 35 staples in his stomach.  Dr S did an impressive job.  I have a feeling that scar will eventually barely be noticeable. The wound itself has healed so quickly that Ben was able to take a brief shower today and let the water run right over it.  He was very happy to finally be able to wash up, but despite being able to sit on a chair in the shower he was totally wiped out afterwards.  Exhausted. Still, we will try for a bit more each day until he builds up some strength.  In the meantime, we have time to do some of this:

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At this point we still have no idea when he will able to come home.  He needs to be able to move around a bit better first, but we will keep working on it each day.  He will definitely need to be eating more.  One little square of jello won’t cut it! Tomorrow I am bringing him a bit of food from home in the hopes that it will tempt him a bit.  Maybe he will be home by Father’s Day. Wouldn’t that be a treat for our family?!

In the meantime, we are keeping our eye on the prize which is our vacation this summer.  Dr K says he will discuss the possibility of us going away after Ben’s next CT on the 7th.  So keep your fingers crossed.  The most generous Vlchek family have offered us the use of their condo in Hawaii (which happens to be Ben’s most favorite place on earth) so it would literally make Ben’s year if we were able to go.  And Kim / Steve …I have no words that could adequately express our appreciation for your offer. “Thank you” never seems like enough, but we are most grateful.  You have to know how excited Ben is at the prospect of going back to Hawaii, when he is willing to entertain sitting on a plane for six hours!

I am desperate for sleep so I will say good night.  Tomorrow is another day.

cancer – what a selfish piece of shit.

Wendy

Moving In The Right Direction

Nurse Lorraine just paid me a visit to let me know that his blood work from last night shows that things are moving in the right direction.  As a result of those blood tests his Heparin was adjusted.  They will take more blood at 7am and then make another adjustment.

Also, his heart rate has finally broken through those damn triple digits back into the doubles.  It is currently down to 94.  Well on its way back to normal.

The sun is shining, the weekend is here.  It’s going to be a good day.

The Worst of Times, The Best of Times

There has been little change in Ben today.  Opening his eyes and / or talking is exhausting for him, so he “sleeps” endlessly with just some brief breaks of semi alertness.  He hasn’t reached for electronics when I’ve been around, but I know he’s been able to send a few messages out.  Don’t be alarmed if his communication is lacking.

His exhaustion likely stems in part from the fact that he is constantly being poked and prodded and therefore hasn’t had deep sleep, despite having had his eyes closed for the better part of the last 30 hours.  (Well, that, coupled with the fact that his body has taken a severe beating.  That’ll do it too.  😏).

At times his lack of energy for communication is amusing.  For example, if he wants to hold hands he just flips and waves his hand around until he gets my attention, instead of using unnecessary energy to speak actual words.  He had me thinking he was trying to reach for something so I was offering up everything in the room (water? Cold cloth? Barf bucket?) while he shook his head in annoyance at my lack of understanding.  It looked like he was having a seizure.  How can I get irritated when he just wants to hold hands?  😀

They were unable to start the blood thinners last night while he had an epidural, due to an increased risk of internal bleeding,  so the doctor removed the epidural this morning and Ben started getting Heparin around 11:00.  Tonight they increased the dose of Heparin as it wasn’t enough to change the blood tests for the better.  They will test his blood again later.

(Earlier today I had a conversation with Dr B who said that he is not worried about the blood clot as long as Ben is getting Heparin. So that was comforting.)

Ben continued to vomit today and his stomach was very distended, so they placed an NG tube down his throat to suck up all the bile.  That seems to have helped and he is less nauseous and has stopped throwing up.  I will not gross you out with a photo of his stomach contents, but I will say that I never knew that dark forest green was a color that could emerge from our stomachs.  Blech.

Currently he is running a bit of a fever.  He is also really restless while he sleeps.  (You may wonder why I add this type of info into the blog….it’s so that I can keep track of what’s going and so that I have a record of it.  Otherwise I will forget. It’s not ALL about the reader! Lol)

Ben’s vitals were just taken, and again his oxygen is low (91) even while he is being given extra oxygen.  (The alarm goes off if you drop to 89.  He should be much higher, especially since he is being given oxygen constantly).  Also, his resting heart rate is even higher tonight – 131 and it went up to 134 while they were checking.  No wonder he is tired.  It’s like he’s in a race while he’s laying in bed.

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Breaking news! Awesome Nurse Lorraine just came in and told Ben she is moving him to a private room.  Wahoo!  I think it was It was my wit and charming personality that did it.  (Either that or I am scaring the other patients.  Hahaha.)  Actually,  she wants him in his own room because the nurses have to check on him so much that it’s disturbing to his roommate.  (In reality, the roommate and his guests talk very loud and disturb Ben’s zen-like state, but either way it is Ben who gets the private room.  So, yay!  Sometimes you don’t need to achieve white shirt status to get the benefits.  Heh heh! You have to be a Mountie to understand that joke.)

Alright…that’s enough of the Worst of Times.  Now for the Best of Times.  Here goes.  This happened today…

(Zak is on the left)


That’s Our Boy!!

And…he was awarded a $500 scholarship!  AND I was told on the side that there is likely another $1500 in scholarships coming his way!  Woohoo!  He walks across the stage at the end of June right before the prom, which is when the other scholarships will be awarded.  FINGERS CROSSED THAT BEN CAN BE THERE!!!!  They are reserving seats for us right up front so that Ben is more comfortable.  How do you like that?!

Thanks again to Beautiful Barbara of Buchanan (an alliteration to amuse Language Loving Lisa) for taking time out of her work day to sit with her youngest favorite brother (😉 Brett) when I couldn’t be here.  And also to Jeff for skipping out on work at the taxpayer’s expense to sit with Ben for a bit.  I won’t tell.

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One last couple bit of fun here.  This is Jaime and Dawson at the Athletes Awards Banquet last night:

And here is the athlete herself in action recently:


“Where is Rae?” you may ask.  Well, as many of you know, she is not fond of allowing me to take her picture.  Very frustrating.  So here is what I found:

That’s Rae in the middle

And that is also Rae, in the middle

Have a joyous evening!

Hug your family. XOX