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, July 2, 2013
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.
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.
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!
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 YouCaring.com, just over $1000 has been raised - that's equivalent to 22 days accommodation.
Amazing.
If we remain positive, we will get through this. Ken is strong. He will kick cancer's ass.
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 YouCaring.com, just over $1000 has been raised - that's equivalent to 22 days accommodation.
Amazing.
If we remain positive, we will get through this. Ken is strong. He will kick cancer's ass.
Tuesday, June 4, 2013
Overwhelmed
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.
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 YouCaring.com - 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.
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 YouCaring.com - 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
Hope
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...
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...
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