Thursday, August 29, 2013

More Ups and Downs, but More Ups, than Downs

The last few weeks have brought more ups and downs.  Ken, thankfully, has shown great improvement.  Powerful antiviral drugs have driven down the virus he was fighting, and I'm hoping the next time the doctors do a viral count, it won't be detectable.  He's been discharged back into the Cancer Lodge, and is doing better with each passing day.

The doctors are trying to reduce his anti-rejection drugs, to get them down to as low a dose as possible.  As awesome as the drugs are, there are serious side effects, so using as little as possible is in Ken's best interest.  Aside from that, there is also the cost - Cyclosporine (Neoral) is very expensive.  It comes in 25mg and 50mg capsules... and Ken is currently on 150mg twice a day (down from 275mg twice daily).

With the decreased dose of Cyclosporine and Prednisone, Ken is now experiencing Graft Verses Host.  This is a bad thing, in that Ken currently has a very uncomfortable, itchy rash and his new immune system attacks his body.  It is a good thing in that a) it's obvious, allowing the doctors to adjust his anti-rejection drugs, and b) in theory, his new immune system should hunt down and destroy any remaining cancer cells (I'm hoping that there aren't any, but if there are, I hope this GVH gets every last one).

I'm feeling very optimistic.

There have been times recently where I've been very unsure as to what the ultimate outcome was going to be for my husband, but now, I'm feeling very good.

Wednesday, August 7, 2013

Ups and Downs...

Better late than never with an update, eh?

The last month has been a total roller coaster ride.  Ken was discharged out of hospital and into outpatient care.  I traveled down to the coast with our boys to provide care from him - he required a lot of assistance.  All the drugs and treatments he's been on a part of his stem cell transplant protocol have left him weak and shaky, hardly even able to walk even.  Medication reactions left him severely dehydrated, which meant addition trips back into the hospital for fluid therapy.

And did I mention I had two toddlers with us all through this?  Needless to say, it was a very difficult trip for all parties involved.

Since then, Ken was doing ok, until he picked up a virus.  I'm not sure where he got it from - could be that he was exposed to someone carrying it, or perhaps he's carried it within his own body all along.  In any event, he became sick enough that he's been re-admitted into the hospital and put into isolation.  He may have pneumonia or worse.  On the one hand, I'm glad he's been re-admitted - there's no better place for him to receive care.  On the other hand, I'm scared that his discharge time to return home will be delayed, or (far) worse - he won't make it home at all.  So far, he has shown some minor improvement, and isn't having to rely on his oxygen mask as much or as often.  But he's still feeling pretty lousy, and is still restricted to his room.  We're awaiting the results on his chest x-rays, to see if there's been improvement since the last films were taken.  No word yet at this point.

Through this all, Ken is keeping positive, but more than anything, he wants to come home.  At the end of this month, it'll be a year since this journey began - a very long year.

Tuesday, July 9, 2013

We have Engraftment!

Is that even a word?

In any event, there are now signs that Ken's Stem Cell transplant is working, and his body is now producing new red blood cells, new white blood cells, and new platelets.  The last few days, there have been small but very real increases in his blood values - very good signs!

At the same time, the last few weeks have not been without trial - Ken has had several complications post- transplant.  These complications are not unusual, but still make recovery that much more difficult.  On top of the Mucositis, Ken has also been retaining fluid - about 10 kilograms worth.  His doctors and nurses have been treating him accordingly, and have reduced the amount retained by several kilograms (about 2 litres of excess fluid).  Unfortunately, this isn't the same as retaining water around that time of the month... this excess water impacts blood pressure and heart function too.  Slowly, I believe the doctors are getting it under control.

Although Ken's discharge date is still very much in the air, it is in the foreseeable future, and I'm hoping to bring our sons with me when he's released - he will need 24/7 care for the first 14 days after release from the hospital, to ensure that no new complications arise.

This has presented yet another challenge - finding affordable family lodging near the hospital.  The Cancer Lodge is not 'child friendly'.  The Ronald McDonald House only houses the families of sick children, not sick parents.  The Easter Seals House will take us, but they are currently booked, and have put us on a waiting list.  I am very hopeful that space will open up - I love my young sons dearly, and want to have them with me.  And Ken misses them terribly.

Any prayers/positive thoughts sent our way are greatly appreciated - we've come this far, the end is now in sight!!!

Tuesday, July 2, 2013

I never thought...

I never thought in a million years that the Stem Cell transplant would be more difficult for Ken to deal with than the massive doses of chemotherapy.  But I guess you learn something new every day.

The anti-rejection drugs are brutal.  One is a chemotherapy agent that he previously had at a far higher dose... but also had it counteracted with another drug at the same time to minimize the effects.  As part of this blog, I feel I have to be brutally honest about some of the things Ken's going through... it's pretty much common knowledge that chemotherapy causes nausea and vomiting, right?

These drugs cause mucositis - an inflammation and sloughing of the mucus membranes.  The inside of Ken's mouth is peeling away, painfully.  So are other areas that have mucus membranes.  He is currently on fairly high doses of pain medications to make life bearable.  He wasn't able to eat, so they had to start giving him nutrients though his Hickman line.  Coughing hurts horribly, so he uses a suction tube to try to gently remove loosened phlegm from his mouth and throat.

I know, awful.  And there's much more, but for now, I need for us to focus on the positive.

Ken is holding his own.  He is strong, and I know he'll keep going.  With any luck, his daily blood tests will start to show that his new Stem Cells are doing their job, and Ken will be back on track to coming home in time for his son's 3rd birthday - I know it's important to him because he missed his 2nd birthday last year because of the cancer.

Love. Hope. Courage.

Tuesday, June 25, 2013

The Transplant

I know I'm a few days late on this update, but I just got back from Vancouver at 7:20 this morning, and had to be at work for 8.  Busy busy busy!  I took the greyhound bus, though, so at least I was able to sleep through the 10 hour ride.

Ken had his Stem Cell Transplant.  This is it.  This is where we need positive thoughts and prayers more than ever.  We need those tiny cells (actually the biggest cells in the body!) to do their thing, find their way into Ken's bone marrow, and take root, setting up his new, healthy immune system.

You'd think something as major as a Stem Cell transplant would be super complicated and a major event.  But really, it's not.  For all the miracle that it is, it's as simple as hanging another IV bag on Ken's IV 'tree', and running those little miracles through a line and into the port in his Hickman line.

Easy as pie.

Ken is on a whole pile of new medications now - anti-rejection drugs on top of the previous score of anti-biotics, anti-virals, anti-fungals, and anti-emetics.  He's got a few new ones of those too.  Far too may to keep track of.

Ken is strong, and I know he'll get through this.  The wear and tear on his body right now is immense, but he's staying positive.  The little things help... right now, we're reading a really awesome book together.  Well, when I was with him after the transplant, I was reading it to him, because he was too ill and his head hurt too badly to be able to read it himself.  We're less than half way through, and I'll continue to read it to him over Skype, until we finish it.  Then we'll have to find another one!

I hate that I was only able to spend 4 days with Ken on this trip, but I know I will be with him again soon when it's confirmed that the Stem Cells are doing their thing, and he get's discharged from the hospital and back in the Cancer Lodge.  I have to be there for up to 2 weeks to make sure there are no complications.

The donations we've received toward his medical care had lifted a huge weight off my shoulders - I can not express that strongly enough.  Thank you, each and every one for you, for making this challenge all that much easier.

Sunday, June 16, 2013

Happy Father's Day, Ken

Happy Father's Day to all the Dads out there.

Ken has been re-admitted into hospital to start preparing for his Stem Cell transplant (I know I previously referred to it as a Bone Marrow transplant, but it is the Stem Cells that are harvested from the donor's marrow, then transplanted into Ken). Ken is currently undergoing his final round of chemotherapy, then will have an intense 3-day course of radiation to kill off his bone marrow, in preparation for receiving the healthy Stem Cells, which will hopefully 'take' quickly and become Ken's new bone marrow. At least that's my understanding. Ken has warned me that he will develop a 'perma tan', which won't necessarily be a bad thing - cancer treatment has left him so pale (unusual for him, even as much as he is a computer geek, lol).

I will be by Ken's side for the first 3 days after the transplant, to provide care and comfort for Ken. I expect he will be very weak, and in no condition to care for himself. This is the part of our situation that is most difficult - the physical distance.

Through all this, we are striving to remain as positive as possible; I talk to Ken multiple times each day on the phone, and Skype with him in the evenings. Our sons love talking to their Daddy on the computer; we are so thankful for the technology that allows up to turn 660km into almost nothing.

I am continually overwhelmed at the support we've received - enough has now been raised to provide for over a month's accommodation. It's amazing, and I am ever so thankful. Soon I'm hoping that we can begin the countdown to when Ken will be back home!

Sunday, June 9, 2013

Stress much?

We're rapidly approaching the wire in regards to transplant time.

I'm scared.  Ken's scared.  Without all the support from our friends and family, I don't know how we'd do it.

Ken has an appointment tomorrow with one oncologist, then another with his head oncologist on Tuesday.  I'm hoping we're going to get all the nitty-gritty details on the transplant by then.

Here is some info on the transplant.

I'm so thankful for the generosity we've been shown.  Since I Started the fundraiser on, just over $1000 has been raised - that's equivalent to 22 days accommodation.


If we remain positive, we will get through this.  Ken is strong.  He will kick cancer's ass.

Tuesday, June 4, 2013


I have been overwhelmed by the support we've received over the last few days.

Enough money has been raised to house Ken for ELEVEN days.  That is awesome.

He's still fighting hard - today his chemotherapy was Vincristine - a drug that Ken reacts to and ends up in a great deal of pain, so he had to be sedated during the bulk of the day.  The unfortunate side effect of Vincristine is neuropathy - numbness and lack of sensation.  Ken unfortunately developed neuropathy in his fingers and hands, a deadly side effect for someone trained as a computer technician.  We were unable to determine whether the neuropathy he suffered was permanent or not - his lymphoma came back too quickly.

Ken has remained incredibly optimistic, and the support he's received has kept his spirits high.  He's very much looking forward to coming home to his family and friends.

Saturday, June 1, 2013

Some Good News

Well, I was very blessed to have Ken home for a week.  And even though he's been back for a week now and I already miss him like crazy, it was so good to have him home.

This was his 'last hurrah' visit... his last chance to come home before his bone marrow transplant.  We were very, very lucky - not only did they find a decent match, they found two, one of which is undergoing the donation procedure as I type.  And, not only was it a decent match, it was a 10/10 match.  It truly does not get much better than that.

Through all this stress and heartache, we have been truly blessed - I've still been able to 'see' my husband on a daily basis (via Skype), and when he's come home, it's been due to the overwhelming generosity of HopeAir, who has flown him on several occasions now.  In addition, Ken has received grants from the Canadian Cancer Society to help with funding his accommodations and drugs.  As Canadians, we are so fortunate that Ken's chemotherapy and the drugs he receives while hospitalized are covered by our Provincial Healthcare and the BC Cancer Agency.  But... once he is discharged into 'day care', the financial burden of anti-nausea medications, antibiotics, antivirals, and antifungals, becomes his to bear.  And soon, should this transplant be successful, we'll be looking at the life-long requirement of anti-rejection drugs.

But that's getting ahead of myself.

The first go-round with Cancer last year exhausted us financially.  This go-round was unexpected, to say the least, and our resources are now tapped out.  As much as I hate to put my hand out, I've also been told repeatedly, "If you need help, ask for it."

And so I am.

I've set up a 'donation' page courtesy of - you can find Ken's story here.  I know not everyone is able to donate - and that's ok!  I'm certainly not in the position right now!  But even sharing the link helps so very much!

To break it down, Ken needs about $1500/month for the next 4 months to finish his treatment.  Part of that time will require me to leave work to care for him, which will also increase our financial burden.

For Ken to stay in Vancouver, it costs him $45/day.  This does include his meals.  Honestly, this is a fantastic deal - where the heck are you going to get a (shared) hotel room in a good neighborhood in Vancouver at those rates?  But... multiply that by 31 days in a month... well, you see what I'm getting at.

With any luck, 6 months from now, this will all be just a memory.  And I'll be able to look forward to spending the next 50 years with my husband doing the things all families want to do - watching our children graduate from school, attend weddings, become grandparents...

The future can be so bright.

Thursday, May 2, 2013


I have to have hope.

The last three weeks have been difficult for all of us.  I was very fortunate to be able to see Ken with our sons two weekends ago.  He is doing his best to be strong, but it is very, very difficult.

I'm still reeling from the return of his lymphoma.

With an intense course of chemotherapy (which still hasn't been completed), the cancer cells in Ken's bone marrow have been driven down to an undetectable level.  I won't say there aren't there, because I'm sure there are some, but there just isn't enough to be detected.

The chemotherapy drugs have caused Ken's hair to fall out again... and I don't care.  It's a small price to pay.  He's trying to make the best of it, he asked, "Is it ok if I give myself a mohawk?" before it had fallen out completely, and of course it was.

I'm going to share a link; it expresses far better than I can the realities of this disease.  Every time a read bits and pieces, it's with tears in my eyes.

Fight To Win

We're currently waiting to find a matching bone marrow donor.  Ken will continue with his chemo until then.  I am hoping and praying they can find a 10/10 match - that's his best shot at surviving this.  Please, if you can, visit: OneMatch and read through the information provided.  If you are willing to be listed on the donor database, I'd be very thankful.  I've listed myself (it's really easy to get tested - just a cheek swab), and I know that although I won't match Ken, there's a chance I could save someone else's life...

Wednesday, April 10, 2013

Not-So-Happy Endings

You know how sometimes you get to read one of those awesome stories how an individual develops Cancer, then goes through treatment, fights hard, and comes back Cancer-Free?

Unfortunately, that is not our story.

Ken is back in Vancouver after blood tests revealed possible issues... possible issues that turned out to be a relapse of Lymphoma, just 12 weeks after finishing treatment.

He is positive, and keeping good spirits.  He is so strong, and I'm so proud of him.  We're both scared.

The Cancer did not come back like it was the first time - there is no primary tumor, and it has spread into his bone marrow.  He needs high doses of chemotherapy to attempt to drive it into remission, then he's going to have to have his bone marrow effectively destroyed, and then have a transplant to replace it with healthy, non-cancerous marrow.  When we get to that point, we will be scouring high and low for as close a DNA match as possible (usually siblings are a person's best bet, but Ken is an only child).

Your positive thoughts and prayers are greatly appreciated.  It's going to be another long haul, but I'm hoping that in 8 or 9 months, Ken can announce that he is Cancer-Free, and ready to take on the world.