Monday, June 23, 2014

One Year Later

My husband finished his Cancer treatment, and underwent a Stem Cell transplant.

The odds were against him, but he survived.

The months following the transplant were very difficult for him, and he was set back by constant illness, bad reactions, and complications.  The odds of surviving the first two months were not great.

But he did it.

The Transplant
Now we are officially one year post-transplant.  The ups and downs have continued.  He has still be plagued by illness, fatigue, and various other setbacks.  Having two toddlers in pre-school means he is constantly exposed to every illness that runs through our community.  There are ongoing issues with balancing medications to prevent rejections and graft-verses-host disease.  And yet, here he is, still going strong.

It has been a very rough road, and to say it has been full of ups and downs is an understatement.  I know he lives in constant fear of his Cancer returning, or of developing new illnesses.  The psychological impact of Cancer is as devastating as the physical ones.

I am so proud of him.  He's doing it.  It's slow, but it's steady.  He tells me that I'm his hero because I've worked hard to improve my health and physical fitness, but in all honesty, he's my hero.
One Year Later
Our third wedding anniversary is rapidly approaching... this time last year, I wasn't sure he'd live to the second.

We're almost there.

One day at a time, one foot in front of the other.

The future is always uncertain, but together our family can live each day to it's fullest.

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!