It is with a heavy heart that I write this blog tonight. The familiar feeling of typing these words again fills me with sadness. We have been here before, but now we know we've tried everything. Mark did not achieve remission with the DTIL3 study so we are left with the hard reality that he will not recover from this disease.
As I wrote these very same words just over a month ago, I had a tiny bit of hope in my heart. I thought that maybe by some small miracle Mark would get through this. But it just hasn't happened that way. We are surprised, but not. We are sad and exhausted by thinking about what this means for our family and our kids' future.
After sitting with Mark this afternoon while he received red blood cells and platelets we forced ourselves to try and find some good in all this. After a few hours we decided that this can't all be for nothing. This completely unfair, horrible experience can't be just that. Something good has to come from it or it will all have been a waste. All the suffering will have been for nothing.
Now that we have experienced the hardships of life with cancer it is tempting to look for the why. Why me? Why Mark? Why my family? We aren't looking for some profound meaning from God or some higher source. We're not looking for the Why in all this because there is no reason for it. Mark didn't do anything to deserve this, it just happened. We are victims of circumstance and we just have to try to get through today.
Over the last few months we have asked Why many times. It seems so unfair. I don't admit that I am comforted by the fact that Mark has cancer just because. But I know in my heart that that there is no reason, it just is. I need to channel my energy and support towards my husband instead of wasting my time asking Why. I need to love my family with all the I've got to get through the next few months. Try to find something good about this whole mess so it's not all for not. If you look hard enough, you'll find it. Mark and I did.
Tuesday, December 12, 2006
Saturday, November 25, 2006
Making a Difference
Mark had his first dose of DTIL3 yesterday morning and things are going smoothly so far. It took a bit of preparation to get here but here we are now.
Last week was full of screening tests and another bone marrow biopsy (number 9?). Unfortunately, Mark's blast cells (leukemia ones) were over the acceptable limit for the study so he had to endure 3 additional days of chemo prior to starting the new trial drug. As exhausting as this all is, we are happy to be actively treating the disease again. It feels like we're trying to do something instead of just waiting around.
The doctors have been cautious about investing all our hope in this but we are happy to be given another shot. It is totally experimental, only 8 other people in Canada have tried it so we need to keep this in the back of our minds as we go through the next two weeks.
Mark is at the Cancer agency and was able to come home today on a day pass. He gets the drug on Mon/Wed/Fri so if he is feeling well, he is able to come home on his off days It was nice to have dinner together and put the kids to bed. Kind of almost feels normal.
Over the next two weeks Mark will be contributing to Leukemia research by participating in this phase I clinical trial. It seems scary and unreal at times, but I know he's making a difference - and that's what counts.
I'm proud of you Mark.
Love Leslie
Last week was full of screening tests and another bone marrow biopsy (number 9?). Unfortunately, Mark's blast cells (leukemia ones) were over the acceptable limit for the study so he had to endure 3 additional days of chemo prior to starting the new trial drug. As exhausting as this all is, we are happy to be actively treating the disease again. It feels like we're trying to do something instead of just waiting around.
The doctors have been cautious about investing all our hope in this but we are happy to be given another shot. It is totally experimental, only 8 other people in Canada have tried it so we need to keep this in the back of our minds as we go through the next two weeks.
Mark is at the Cancer agency and was able to come home today on a day pass. He gets the drug on Mon/Wed/Fri so if he is feeling well, he is able to come home on his off days It was nice to have dinner together and put the kids to bed. Kind of almost feels normal.
Over the next two weeks Mark will be contributing to Leukemia research by participating in this phase I clinical trial. It seems scary and unreal at times, but I know he's making a difference - and that's what counts.
I'm proud of you Mark.
Love Leslie
Wednesday, November 8, 2006
A Remote Possibility...
It's with a reserved and cautious optimism that I share this information with everyone... Mark has been offered a chance to participate in the DTIL3 study after all. Unbelievably, his blood was retested and it came back within the acceptable range to move ahead in the study. We are in complete shock and almost afraid to believe it.
We have been sitting on the news for a while because we don't want to drag everyone along on the rollercoaster with us, but we have a bit of hope to hold on to now and that is what is important. It is all very preliminary, there all lots of tests this week still, but we at least have another chance and that is what we are focusing on.
The last two weeks or so we have been unreal - almost like we're in a movie. Watching people go about their day, listening to people shush their kids in waiting rooms, watching them bustle about on Broadway while they catch the B-Line. All of it while Mark and I sit in traffic or wait for another doctors appointment for what? It all seems so wasted. Everyone's time is wasted rushing somewhere or rushing their kids to grow up. It has really changed the way we look at life and it has changed us forever.
It's impossible not to think about our future and how this disease is stealing it away from us. The last two weeks have changed us and in a wierd way, made us even more committed to fighting this disease. For now we have a slim chance and we're taking it. No matter how much disappointment may or may not be around the corner, we'll take today - with open arms.
We have been sitting on the news for a while because we don't want to drag everyone along on the rollercoaster with us, but we have a bit of hope to hold on to now and that is what is important. It is all very preliminary, there all lots of tests this week still, but we at least have another chance and that is what we are focusing on.
The last two weeks or so we have been unreal - almost like we're in a movie. Watching people go about their day, listening to people shush their kids in waiting rooms, watching them bustle about on Broadway while they catch the B-Line. All of it while Mark and I sit in traffic or wait for another doctors appointment for what? It all seems so wasted. Everyone's time is wasted rushing somewhere or rushing their kids to grow up. It has really changed the way we look at life and it has changed us forever.
It's impossible not to think about our future and how this disease is stealing it away from us. The last two weeks have changed us and in a wierd way, made us even more committed to fighting this disease. For now we have a slim chance and we're taking it. No matter how much disappointment may or may not be around the corner, we'll take today - with open arms.
Thursday, October 26, 2006
The only thing to do
It is even harder to compose this blog than the last two but I am going to try...
We are back at T15 and Mark is not well. We have been struggling with managing his pain and more complications are arising. Unfortunately, this is typical of Leukemia and we have come to a roadblock with active treatment of the disease.
Mark's antibodies were too high to participate in the DTIL3 study and we are dealing with the reality of what this means for us. The doctors have retested Mark in the hopes that his antibodies may have dropped over the last 10 days but it is a very remote possibility.
Mark and I are now faced with the reality that there will be no chance for recovery from this terrible disease. We are in shock, devastated, mad and overwhelmingly sad. We knew that this was a real possibility but never actually thought it would happen to us. For those of you who have spoken to us, we know there is no perfect response, there is nothing to say that can fix this. It is completely unfair and we are trying our best to accept and move on. It felt impossible yesterday and the day before but we have to try. Today is a new day and we are determined to make the most of our time left together. It's the only thing to do.
We are back at T15 and Mark is not well. We have been struggling with managing his pain and more complications are arising. Unfortunately, this is typical of Leukemia and we have come to a roadblock with active treatment of the disease.
Mark's antibodies were too high to participate in the DTIL3 study and we are dealing with the reality of what this means for us. The doctors have retested Mark in the hopes that his antibodies may have dropped over the last 10 days but it is a very remote possibility.
Mark and I are now faced with the reality that there will be no chance for recovery from this terrible disease. We are in shock, devastated, mad and overwhelmingly sad. We knew that this was a real possibility but never actually thought it would happen to us. For those of you who have spoken to us, we know there is no perfect response, there is nothing to say that can fix this. It is completely unfair and we are trying our best to accept and move on. It felt impossible yesterday and the day before but we have to try. Today is a new day and we are determined to make the most of our time left together. It's the only thing to do.
Sunday, October 22, 2006
Still Waiting...
Today is Sunday and it's an amazing fall day again in Langley. The sun is shining and I have the sliders open while a warm crisp breeze blows through the house.
Kids are sleeping, actually Audrey is singing to herself on her bed while Noah snores. Happy sounds in what feels like a bit of a dream. If only adults could just enjoy the moment the way Audrey seems to. She knows Mark is sick but is still able to go about her day just like always, singing, playing barbies and reading books. What I would give for that unspoiled happiness that we see on her face even though it feels at times like the world is crashing down.
It's the waiting that does it. We were pretty confident that we would know by Thursday if Mark could participate in the trial but as luck would have it, they didn't send his sample out untill Monday so it adds three more days to the wait.
So the trial...it's very new, a phase one trial. Only 25 people world wide have tried the drug for treating Leukemia and only 7 people here in Canada (all of them at VGH). This would make Mark lucky number 8. As scary as it sounds, all drugs need to go through this process and somebody has to try them. We are eagre to get on with the treatments because Mark is running into complications now with his numbers being so low. Fevers, infections, pain ect... it's been a rough week but we are coping with "Nanny Chris" and now Mark's friend Warren is here. It's great having the help and it breaks up the routine a bit to be able to visit with old friends.
Of course I will blog any news as soon as we get it so keep checking in on the blog and email when you can.
Kids are sleeping, actually Audrey is singing to herself on her bed while Noah snores. Happy sounds in what feels like a bit of a dream. If only adults could just enjoy the moment the way Audrey seems to. She knows Mark is sick but is still able to go about her day just like always, singing, playing barbies and reading books. What I would give for that unspoiled happiness that we see on her face even though it feels at times like the world is crashing down.
It's the waiting that does it. We were pretty confident that we would know by Thursday if Mark could participate in the trial but as luck would have it, they didn't send his sample out untill Monday so it adds three more days to the wait.
So the trial...it's very new, a phase one trial. Only 25 people world wide have tried the drug for treating Leukemia and only 7 people here in Canada (all of them at VGH). This would make Mark lucky number 8. As scary as it sounds, all drugs need to go through this process and somebody has to try them. We are eagre to get on with the treatments because Mark is running into complications now with his numbers being so low. Fevers, infections, pain ect... it's been a rough week but we are coping with "Nanny Chris" and now Mark's friend Warren is here. It's great having the help and it breaks up the routine a bit to be able to visit with old friends.
Of course I will blog any news as soon as we get it so keep checking in on the blog and email when you can.
Tuesday, October 10, 2006
Courage
It is with a heavy heart that I write this blog tonight. The kids are tucked in and I have finally worked up the courage to share the latest news.
We got word from Mark's doctor on Thursday that he is not in remission following the latest "salvage chemo". This is exactly what we did not want to hear and we honestly thought it would turn out different. Over the weekend our utter and complete disappointment and sadness has softned a bit as we are now looking ahead at pursuing an experimental clinical trial.
Marks chemotherapy options have all been exhausted now and he can no longer tolerate any more treatments because of toxicity levels. For now, the tranplant will not take place because a remission is necessary for it to stand a chance.
Our strength has been tested a number of times over the last few months but this weekend has been the most difficult. We are cautious to invest our hope in this clinical trial because there are no guarantees and only unknowns in our future.
Writing this blog helps me to see the reality of our situation and puts life into perspective as I hope it does for you reading it right now. It allows me to vent and cry and then finally have hope at the end of each entry because I know this one will NOT be the last one I write. Mark is a fighter and he has resolved to not let cancer steal him away from me or our kids without a fight. So don't feel sorry for us, have hope and feel strength. Have faith in whatever it is you believe in and think of us when you can, we need it more now than ever.
We got word from Mark's doctor on Thursday that he is not in remission following the latest "salvage chemo". This is exactly what we did not want to hear and we honestly thought it would turn out different. Over the weekend our utter and complete disappointment and sadness has softned a bit as we are now looking ahead at pursuing an experimental clinical trial.
Marks chemotherapy options have all been exhausted now and he can no longer tolerate any more treatments because of toxicity levels. For now, the tranplant will not take place because a remission is necessary for it to stand a chance.
Our strength has been tested a number of times over the last few months but this weekend has been the most difficult. We are cautious to invest our hope in this clinical trial because there are no guarantees and only unknowns in our future.
Writing this blog helps me to see the reality of our situation and puts life into perspective as I hope it does for you reading it right now. It allows me to vent and cry and then finally have hope at the end of each entry because I know this one will NOT be the last one I write. Mark is a fighter and he has resolved to not let cancer steal him away from me or our kids without a fight. So don't feel sorry for us, have hope and feel strength. Have faith in whatever it is you believe in and think of us when you can, we need it more now than ever.
Tuesday, October 3, 2006
Waiting...
It's been a long few weeks to say the least and we are still waiting to see if Mark is in remmission. Mark's 5th biopsy last month was inconclusive and we have been forced to wait for another one to tell us more. Tommorrow is the day and we will have news hopefully by the weekend.
So since I blogged last, Mark has been back and forth to B4 on a daily basis with one trip to the ER and a call to 9-1-1. The ups and downs of this disease have been very extreme these last two weeks and we are hoping for some relief in the days to come.
Some good news...Chris (Mark's brother) is here to help out and the two of them are actually on their way to Redwoods to play a few holes of golf. A little bit of R&R for Mark before we embark on the next leg of this journey.
The sun is shining and we're going to enjoy the day for what it is. A beautiful fall day in Langley with the crisp moring air and the fog lifting off the trees as I type. All our love to everyone and we'll keep you posted once again.
So since I blogged last, Mark has been back and forth to B4 on a daily basis with one trip to the ER and a call to 9-1-1. The ups and downs of this disease have been very extreme these last two weeks and we are hoping for some relief in the days to come.
Some good news...Chris (Mark's brother) is here to help out and the two of them are actually on their way to Redwoods to play a few holes of golf. A little bit of R&R for Mark before we embark on the next leg of this journey.
The sun is shining and we're going to enjoy the day for what it is. A beautiful fall day in Langley with the crisp moring air and the fog lifting off the trees as I type. All our love to everyone and we'll keep you posted once again.
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