Saturday, July 20, 2013
Milestones
Hi, Austin! (you may be the only one reading this...)
Just a note to mark the passing of several milestone's since my last post. In addition to TOM WALKING:
- Laura turned 25 while volunteering in Africa,
- Nancy is engaged and we will be adding a son (Hi, Garrett) to the family
- Jeanine made it through a very tough Year 1 at Ryerson,
- Tom passed his 4 year 'cancerversary' and is doing great,
- We got a new doggie, Miss Cleo (a.k.a. Houdini),
- Mike has retired from his job after 35 years with the provincial government, and
- I survived one of the most wretched winters I have ever seen. Seriously. That is my big accomplishment. Looks pretty pitiful in comparison to what the rest of my family has been doing!
I was able to be back in Toronto again in June when Tom had his knee contracture surgery, and I am planning to go out to be there for his follow up with the surgeon. Plans have begun in earnest to get ready for my boys to come home. We had at one point hoped for July but now we know for sure it won't be until August. It looks like everything is lining up so that Tom can be home before his 20th birthday on September 2 - so amazing to think he will be 20. We don't know exactly when Tom will be cleared to travel. Right now he still cannot bend his leg since the knee surgery, so until he can, he really couldn't fly.
Mike was on leave, but has now officially retired from his job. As I tease him, he works for ME now! (and no doubt he thinks, "And this is different how, exactly?"). He will be looking for something else in due time, but for now, he will focus on Tom.
I admit I was nervous for Tom's knee surgery, because it was going to be in the area where Mr. Ewing first occurred (a.k.a., Tom's tumour), and somehow I was anxious that surgery in that area would sort of wake it back up. I know, paranoid, right? I was relieved when the surgeon told us that the tissue looked normal. Tom tolerated the post-surgery pain much more easily - or they had better drugs on board - whatever it was, we were grateful!
He was up and weight bearing within 2 days of surgery, and in less than a week, walking short distances (I put a link over on the right to a video Mike filmed - hopefully it works). Watching the video for the first time, I was feeling sad enough that I wasn't there in person to see it, but then Meghan reminded Tom to say hi to his Mom ... and I kind of lost it. Even now I get all verklempt just thinking about it. My cousin Wendy would tell me I am kookoo bananas for crying over something happy....and in fact she has told me that...so I suck it up and remind myself how much we have to be grateful for.
I won't dwell too much on what's up with the girls (this blog is about Tom, after all), but needless to say, life is never dull.
I admit to being a bit lonesome sometimes, but we are all just doing what we have to do to help Tom get on the right track. Tom works so hard every day, and we are so proud of him. He has to take painkillers to make it through therapy (walking), in part because his bones are so brittle he has multiple fractures that are now healing.
When you stop and think about how his life has undergone a complete 180 degree turnaround in the past year, it is staggering. We are blessed. We have met so many amazing, kind, talented and dedicated people in Toronto --- we're so grateful for each of them!
Tom had some down days last week. He is so tired and just wants to come home. Soon, soon - just be patient a little while longer, we can see the light up ahead!
We have all had to work through a lot of emotions and deal with how we feel about the issues that occurred during his journey. Forgiveness. Acceptance. Peace. Somedays are easier than others, but at least Tom is still in the fight and his cancer remains in remission. They say for Sarcomas there is no such thing as a cure, so we must remain on our guard.
Thanks for checking in, thanks for supporting us and thanks especially for praying for us.
Love to all,
Tom's Mom
Just a note to mark the passing of several milestone's since my last post. In addition to TOM WALKING:
- Laura turned 25 while volunteering in Africa,
- Nancy is engaged and we will be adding a son (Hi, Garrett) to the family
- Jeanine made it through a very tough Year 1 at Ryerson,
- Tom passed his 4 year 'cancerversary' and is doing great,
- We got a new doggie, Miss Cleo (a.k.a. Houdini),
- Mike has retired from his job after 35 years with the provincial government, and
- I survived one of the most wretched winters I have ever seen. Seriously. That is my big accomplishment. Looks pretty pitiful in comparison to what the rest of my family has been doing!
I was able to be back in Toronto again in June when Tom had his knee contracture surgery, and I am planning to go out to be there for his follow up with the surgeon. Plans have begun in earnest to get ready for my boys to come home. We had at one point hoped for July but now we know for sure it won't be until August. It looks like everything is lining up so that Tom can be home before his 20th birthday on September 2 - so amazing to think he will be 20. We don't know exactly when Tom will be cleared to travel. Right now he still cannot bend his leg since the knee surgery, so until he can, he really couldn't fly.
Mike was on leave, but has now officially retired from his job. As I tease him, he works for ME now! (and no doubt he thinks, "And this is different how, exactly?"). He will be looking for something else in due time, but for now, he will focus on Tom.
I admit I was nervous for Tom's knee surgery, because it was going to be in the area where Mr. Ewing first occurred (a.k.a., Tom's tumour), and somehow I was anxious that surgery in that area would sort of wake it back up. I know, paranoid, right? I was relieved when the surgeon told us that the tissue looked normal. Tom tolerated the post-surgery pain much more easily - or they had better drugs on board - whatever it was, we were grateful!
He was up and weight bearing within 2 days of surgery, and in less than a week, walking short distances (I put a link over on the right to a video Mike filmed - hopefully it works). Watching the video for the first time, I was feeling sad enough that I wasn't there in person to see it, but then Meghan reminded Tom to say hi to his Mom ... and I kind of lost it. Even now I get all verklempt just thinking about it. My cousin Wendy would tell me I am kookoo bananas for crying over something happy....and in fact she has told me that...so I suck it up and remind myself how much we have to be grateful for.
I won't dwell too much on what's up with the girls (this blog is about Tom, after all), but needless to say, life is never dull.
I admit to being a bit lonesome sometimes, but we are all just doing what we have to do to help Tom get on the right track. Tom works so hard every day, and we are so proud of him. He has to take painkillers to make it through therapy (walking), in part because his bones are so brittle he has multiple fractures that are now healing.
When you stop and think about how his life has undergone a complete 180 degree turnaround in the past year, it is staggering. We are blessed. We have met so many amazing, kind, talented and dedicated people in Toronto --- we're so grateful for each of them!
Tom had some down days last week. He is so tired and just wants to come home. Soon, soon - just be patient a little while longer, we can see the light up ahead!
We have all had to work through a lot of emotions and deal with how we feel about the issues that occurred during his journey. Forgiveness. Acceptance. Peace. Somedays are easier than others, but at least Tom is still in the fight and his cancer remains in remission. They say for Sarcomas there is no such thing as a cure, so we must remain on our guard.
Thanks for checking in, thanks for supporting us and thanks especially for praying for us.
Love to all,
Tom's Mom
Saturday, March 9, 2013
Ankles? Check!
Tom's been working very hard in therapy. He does a combination of occupational and physio therapy every day, Monday to Friday, for about 5 hours each day. He got an extra boost in mid-January with more Botox injections into his leg muscles to help release the muscle contractures. The combination of the Botox and the pool therapy seems to have really benefitted his right knee, he has very good control of that leg and an almost normal range of motion. However, the left knee and the ankles remain 'stuck'. Surgery remains the best option for rehabilitation of these joints.
We have to keep focused on the long term goal, and keep moving forward.
Thanks for checking in on us, and thank you so much for praying with us and for us. We have so many really good friends and wonderful family, we are truly blessed.
Take care,
Tom's Mom
I've been able to take some of my vacation time, and came back to Toronto on March 1st. Tom's very good friend, Austin, traveled at the same time and stayed with us for the weekend. The guys had a great visit, and it gave Tom such a lift to have company from home over and above his family! We were really glad that Austin could come in time to see Tom working in the pool on the Friday afternoon. As it turned out, Austin and I got to witness a milestone: Tom walking in the pool (on his toes, but still), without any assistance! In the beginning, he needed two therapists to help him, and then one - and now, none! He got in a few more pool sessions this past week, trying to make the most of every opportunity before the surgery.
We had hoped maybe the surgery would be done sooner, as Tom was on a cancellation list, but no such luck....
The night before his surgery, we had a pizza supper together at the hospital to make sure he was well fed before his midnight-onwards fast would begin! Bright and early the next morning, we rode with Tom via a private wheelchair transportation company from his hospital (Toronto Rehab) to the hospital where the surgery would be completed (Toronto Western), to the Day Surgery unit. Many members of the staff took time to come and find Tom before he left to wish him well. They were all so excited for Tom to finally get the surgery he'd been waiting so long for. Mike and I took turns sitting with Tom, as each patient could only have one visitor at a time. In between, we took turns napping sitting upright in the waiting room, a skill Mike and I have honed to a fine art in the last few years!
Finally, it was time. We met the surgeon and the anesthetist, and they reviewed the plan one more time. Tom opted for a spinal anaesthetic rather than general - the chances of complication are lower and the recovery usually faster than with a general anaesthetic.
Dr. Syed came and found us a little more than an hour later, to say everything had gone very well. Tom's feet were in temporary casts, that will remain in place until his next appointment with the surgeon (set for March 18). As we understand it, more lightweight casts will be put in place at that time. Tom has to remain completely non weight bearing for 6 weeks post-surgery.
At first, Tom was very happy, almost euphoric - when he came out from under the sedative, and saw his toes point UP, he was so excited! And then the pain block started to wear off and the pain levels shot from a 2 to a 12, on a scale of 1 to 10. Tom said the pain was similar to what he felt before his cancer was diagnosed and chemo had begun. Meaning - excruciating. I tell you, I would give anything to take that pain away. And in that moment, I don't mind saying I had a hard time feeling as Christian and forgiving about Tom's journey and the complications he has faced. I'm still working on that.
Tom had to transfer back into his wheelchair and back into the wheelchair van for transport back to Toronto Rehab. I know he felt every bump and jerk of the vehicle as it moved through the evening rush hour. Finally, we got him settled back in his bed, and got the pain meds cranked up to the max. The next day wasn't so easy for him, but we used the meds to ensure he stayed on top of the pain. Hooray for drugs, drugs, drugs (everyone from Canada will remember the catchy Public Service Announcement jingle from our childhood!). You know that the pain was bad because he didn't even feel well enough to make the trip to the apartment for the weekend. The thing he kept focusing on was that this pain has a useful purpose, and is helping him move down the road to a full recovery. It doesn't hurt that he is more than a little 'persistent'. (My family's euphemism for 'stubborn'. Lucky Tom, he inherited that quality from both sides of the family tree!)
Today he is so much better, we are actually cutting back on the pain meds. After helping him wash up, he transferred into his wheelchair and he and Mike are cruising around the building just to give him a change in scenery, while I post this (long overdue) blog post.
The exact plan for the next few months is under construction. We know planning will begin now for the left knee to be operated on (again by Dr. Syed), and that it will hopefully/likely take place in about 3 months time. In the meanwhile, Tom will keep doing as much therapy as possible, given the cumbersome casts on his feet. He may end up moving from an inpatient to an outpatient status, that remains to be seen. He has another oncology checkup in April and then again in July.
And then, God willing, Tom will be able to transfer his treatment to Regina by the end of July. Lots of therapy still lies ahead, and Tom has a few more credits to complete his Grade 12.
Now our next goal is to make connections with the right people back in Regina and determine if our goals are achievable.
I don't mind saying this last phase has been hard, being separated both as a family and as a couple, and because Tom has been apart from his friends and support network. The people here have been fantastic, but as the saying goes, there's no place like home. Looking so forward to that day.
Spring appears to have arrived in Toronto. Not looking forward to having to return to the land of ice and snow on Friday night, for many reasons, but that's what must be done.
Today he is so much better, we are actually cutting back on the pain meds. After helping him wash up, he transferred into his wheelchair and he and Mike are cruising around the building just to give him a change in scenery, while I post this (long overdue) blog post.
The exact plan for the next few months is under construction. We know planning will begin now for the left knee to be operated on (again by Dr. Syed), and that it will hopefully/likely take place in about 3 months time. In the meanwhile, Tom will keep doing as much therapy as possible, given the cumbersome casts on his feet. He may end up moving from an inpatient to an outpatient status, that remains to be seen. He has another oncology checkup in April and then again in July.
And then, God willing, Tom will be able to transfer his treatment to Regina by the end of July. Lots of therapy still lies ahead, and Tom has a few more credits to complete his Grade 12.
Now our next goal is to make connections with the right people back in Regina and determine if our goals are achievable.
I don't mind saying this last phase has been hard, being separated both as a family and as a couple, and because Tom has been apart from his friends and support network. The people here have been fantastic, but as the saying goes, there's no place like home. Looking so forward to that day.
Spring appears to have arrived in Toronto. Not looking forward to having to return to the land of ice and snow on Friday night, for many reasons, but that's what must be done.
We have to keep focused on the long term goal, and keep moving forward.
Thanks for checking in on us, and thank you so much for praying with us and for us. We have so many really good friends and wonderful family, we are truly blessed.
Take care,
Tom's Mom
Saturday, February 2, 2013
We're still here...
Tom and Mike were home for a few days at Christmas, and then I was able to go out and visit for a bit in January. It was great to see in person Tom's progress, and how his hard work is paying off!
Tom had a checkup in January, and all is well on the cancer front - Tom remains in remission! Thank God. Thank God.
Tom was staying at the Hillcrest location of Toronto Rehab, but just last week they moved the musculoskeletal program to their downtown location on University Avenue. We knew this move was in the works for months, and the apartment we sublet is only a few blocks away.
The great thing about the new facility -- in addition to being so close to the apartment - is that it is newly renovated. The rooms are bigger and more spacious, and Tom has a bathroom and shower that are accessible for him and the wheelchair. Another great thing is that he starts pool therapy next week! The pool had broken down at the other facility, and because it was being closed, it was not repaired. The new facility has a pool, and Tom loves swimming, it's something he has missed a lot. But Tom won't just be swimming for leisure: he will be working in the pool as part of his recovery. Actually - pool therapy has already played a large role in his recovery. If it hadn't been for Lori, the occupational therapist working with Tom back when he was in Palliative, I don't know if he would be where he is today. It was getting back in the pool last January that showed him that by his own hard work he could influence his situation, and it was affirmation for both him and us of how much better and stronger he was getting. This gave us the energy we needed to find our way through the system and keep on pushing until we could get him seen by experts in the field. And it all began in the pool.
He is still very busy with therapy, about 5 hours of work every day - it is physically very demanding. Things have now progressed to the point where he doesn't have pain when the therapists work on his legs and feet. In the earlier stages, because his feet had become so desensitized and 'numb', the massage the therapists did to help release the contractures was actually incredibly painful. Gradually, as his nerve endings have woken back up and reconnected his lower body to his upper body, it has become less painful, and he no longer needs additional pain meds to get through the day.
He uses a tall walker and can stand for a few minutes every day - with help - great progess!
The surgery is scheduled for March 7, but he is on a cancellation list - it may occur sooner. I hope to be able to go back out, whenever the surgery ends up happening.
It feels like it's been a record winter here in Regina, with a ridiculous amount of snow. In the last half of January we also experienced record cold - and the only good thing I can say about that is that it tends not to snow when it's that cold! At first, I was determined to shovel the snow by hand, because I was rather nervous of the snowblower. I became quickly convinced I had to overcome the fear when we got hit with blizzard after blizzard, starting in November. The snow on our front lawn is now piled well over 5 feet high - without the snowblower, I'd be hooped, because I can't really throw the snow by hand over that height!
Thank God for neighbours, and friends, and unknown Good Samaritans - we have had extra help from time to time, and between that and the efforts of Laura and I, we are managing to keep up.
I'll be honest, it has been hard having to be here while Mike and Tom are so far away. And it's not just because of the snow and cold. I miss my boys.
I try to keep my eye on the prize, and know that every day, with God's help, the little things we do are going to help rebuild and reclaim the lives that cancer tried to steal from Tom and from our family. But there are days that it is so hard to stay positive.
If you are reading this, then I ask you to pray for Tom's healing and recovery, and for us to remain strong.
May God bless you and keep you in His care.
Tom's Mom
Tom had a checkup in January, and all is well on the cancer front - Tom remains in remission! Thank God. Thank God.
Tom was staying at the Hillcrest location of Toronto Rehab, but just last week they moved the musculoskeletal program to their downtown location on University Avenue. We knew this move was in the works for months, and the apartment we sublet is only a few blocks away.
The great thing about the new facility -- in addition to being so close to the apartment - is that it is newly renovated. The rooms are bigger and more spacious, and Tom has a bathroom and shower that are accessible for him and the wheelchair. Another great thing is that he starts pool therapy next week! The pool had broken down at the other facility, and because it was being closed, it was not repaired. The new facility has a pool, and Tom loves swimming, it's something he has missed a lot. But Tom won't just be swimming for leisure: he will be working in the pool as part of his recovery. Actually - pool therapy has already played a large role in his recovery. If it hadn't been for Lori, the occupational therapist working with Tom back when he was in Palliative, I don't know if he would be where he is today. It was getting back in the pool last January that showed him that by his own hard work he could influence his situation, and it was affirmation for both him and us of how much better and stronger he was getting. This gave us the energy we needed to find our way through the system and keep on pushing until we could get him seen by experts in the field. And it all began in the pool.
He is still very busy with therapy, about 5 hours of work every day - it is physically very demanding. Things have now progressed to the point where he doesn't have pain when the therapists work on his legs and feet. In the earlier stages, because his feet had become so desensitized and 'numb', the massage the therapists did to help release the contractures was actually incredibly painful. Gradually, as his nerve endings have woken back up and reconnected his lower body to his upper body, it has become less painful, and he no longer needs additional pain meds to get through the day.
He uses a tall walker and can stand for a few minutes every day - with help - great progess!
The surgery is scheduled for March 7, but he is on a cancellation list - it may occur sooner. I hope to be able to go back out, whenever the surgery ends up happening.
It feels like it's been a record winter here in Regina, with a ridiculous amount of snow. In the last half of January we also experienced record cold - and the only good thing I can say about that is that it tends not to snow when it's that cold! At first, I was determined to shovel the snow by hand, because I was rather nervous of the snowblower. I became quickly convinced I had to overcome the fear when we got hit with blizzard after blizzard, starting in November. The snow on our front lawn is now piled well over 5 feet high - without the snowblower, I'd be hooped, because I can't really throw the snow by hand over that height!
Thank God for neighbours, and friends, and unknown Good Samaritans - we have had extra help from time to time, and between that and the efforts of Laura and I, we are managing to keep up.
I'll be honest, it has been hard having to be here while Mike and Tom are so far away. And it's not just because of the snow and cold. I miss my boys.
I try to keep my eye on the prize, and know that every day, with God's help, the little things we do are going to help rebuild and reclaim the lives that cancer tried to steal from Tom and from our family. But there are days that it is so hard to stay positive.
If you are reading this, then I ask you to pray for Tom's healing and recovery, and for us to remain strong.
May God bless you and keep you in His care.
Tom's Mom
Monday, December 10, 2012
Dear Santa
Since my last update...
Tests have confirmed sufficient blood flow to the feet to facilitate post-surgical recovery, and Tom has also met with the other orthopedic surgeon (the knee-hip guy).
Tom continues with his labours at Toronto Rehab. Tom and Mike have now set up a home camp at the sublet apartment. Tom comes out on the weekends on a pass.
At this point, the team is planning to move ahead in two phases - although the plan does seem to keep evolving so I don't know that it is set in stone yet. At one point last week they were talking about an agressive surgery that dealt with the ankles, knees and even a hip replacement all in one go! However - that is not the current plan.
The current plan is this: Phase 1 will be for the foot-ankle ortho surgeon to operate on the Achilles tendons of both feet. As Mike understands it, there will be an incision to cut the tendon, the ankle will be bent to a 90 degree right angle, and the tendon will be reattached, and then each foot will be put in a cast.
There will be a recovery and therapy period of 2 to 6 months... at some point then Phase 2: a second specialist - the knee-hip dude - will operate on the tendons and ligaments of both knees to release those contractures. After the second surgery, another recovery period of 2 to 6 months.
Since surgery will not likely be until February, it means that Tom can travel home for a few short days at Christmas. Jeanine and Nancy should be home within the coming week as well. Naturally, we are grateful that Santa was able to grant our wish to be together --- but we can't help but wish things were moving more quickly. I hope that doesn't seem ungrateful. Tom has been patient for so long waiting for and working towards a life beyond cancer. Looks like a little (a lot) more patience will be needed yet.
Praying for joy, for strength and for continued healing - and of course, for patience!
Thomas' Mom
Tests have confirmed sufficient blood flow to the feet to facilitate post-surgical recovery, and Tom has also met with the other orthopedic surgeon (the knee-hip guy).
Tom continues with his labours at Toronto Rehab. Tom and Mike have now set up a home camp at the sublet apartment. Tom comes out on the weekends on a pass.
At this point, the team is planning to move ahead in two phases - although the plan does seem to keep evolving so I don't know that it is set in stone yet. At one point last week they were talking about an agressive surgery that dealt with the ankles, knees and even a hip replacement all in one go! However - that is not the current plan.
The current plan is this: Phase 1 will be for the foot-ankle ortho surgeon to operate on the Achilles tendons of both feet. As Mike understands it, there will be an incision to cut the tendon, the ankle will be bent to a 90 degree right angle, and the tendon will be reattached, and then each foot will be put in a cast.
There will be a recovery and therapy period of 2 to 6 months... at some point then Phase 2: a second specialist - the knee-hip dude - will operate on the tendons and ligaments of both knees to release those contractures. After the second surgery, another recovery period of 2 to 6 months.
Since surgery will not likely be until February, it means that Tom can travel home for a few short days at Christmas. Jeanine and Nancy should be home within the coming week as well. Naturally, we are grateful that Santa was able to grant our wish to be together --- but we can't help but wish things were moving more quickly. I hope that doesn't seem ungrateful. Tom has been patient for so long waiting for and working towards a life beyond cancer. Looks like a little (a lot) more patience will be needed yet.
Praying for joy, for strength and for continued healing - and of course, for patience!
Thomas' Mom
Wednesday, November 7, 2012
Possible Surgery Ahead
The entire team met with Tom and Mike today, and conferenced me in as well.
The opinion of Tom's rehab team is that we should examine whether surgery is an option.There has been good progress on a slow and steady pace, with heavy emphasis on the word S-L-O-W.
In order to walk, you have to be able to have your foot at a neutral position - when you stand your ankle starts at a 90 degree angle.
They have been able to improve the left ankle (it has improved from bending only at a 45 degree angle to now bending at 70 degrees). But the right ankle appears to be stuck at 55 degrees no matter what they try. The Botox injections don't appear to have been particularly helpful.
Ironically, the left leg is the weaker leg, but has been responding better to treatment. Maybe because the muscles are weaker, they aren't fighting the process so hard? I don't know... They do say that the left leg might always need a brace or extra support, but that decision is well down the road.
The tendon and muscles of that right ankle are solid as rock and have not reponded well at all. He does have the ability to rotate his ankle and wiggle his toes, and put weight for limited periods of time on the balls of his feet, but every little bit of progress has been slow and painful going. They feel that even though there would need to be a recovery period of 8 to 12 weeks where little or no rehab therapy could be done on the leg that gets surgery, it would be worth the trade off and move him further and faster down the road to recovery than if they just continued as they are now.
If he has surgery on one leg, they will likely discharge him from the inpatient setting and he will continue therapy on an outpatient basis on the other leg.
Tom was seen by a specialist at Toronto Western Hospital today. He is an orthopedic surgeon who specializes in the ankle and foot. His first concern is whether or not Tom has good enough blood flow to the feet to allow healing post surgery, so the next step is that they will arrange for a test of blood flow and circulation. The test is called an "Arterial Doppler" test, it is essentially an ultrasound of your arteries.
He will also be referred to yet another orthopedic surgeon at Toronto Western who will take a look at the knee and hip contractures, and give an opinion as to whether any additional surgeries will be necessary at some point.
Acommodation update: Tom and Mike move into a furnished sublet apartment on December 1, in Jeanine's building (I know, you all feel sorry for Jeanine right? But she says she is happy about it!) For a couple of weeks Mike will actually have to camp at Jeanine's, as we need to vacate RMH by mid November.
I found the apartment on Kijiji, of all things. No address was listed, but when I read the description, I was almost certain it was Jeanine's building - so I emailed for more information. It seemed almost like Fate or God stepping in when I saw the response! What a terrific blessing to have found downtown accommodation near the hospitals and near (VERY VERY near) Jeanine!
We have signed a sublet for 3 months at a minimum, and then will renew on a month to month basis. Toronto Rehab's musculoskeletal rehab proghram is moving from Hillcrest (where he is now) to the downtown clinic on University Avenue in Toronto in January. It is only a few blocks away from Jeanine's apartment, so during the outpatient phase it would be nice and handy.
The thinking is that once both legs are back at full strength they would readmit him full time. Still unknown how many months it would be after that point.
The doctors are very encouraging, they say his youth and motivation are huge, huge factors in his recovery. Of course all these ideas depend on what is physically possible.
(Please continue to pray with us that the doctors will be led to the right answers for Tom, and that it will be possible for him to achieve his dream of walking again.)
Naturally this news makes me a bit sad - I miss my boys - but it will all be worthwhile if Tom can resume the life he ought to have. We hope that's God's plan, too.
Love to you all, thanks for checking in,
Tom's Mom
The opinion of Tom's rehab team is that we should examine whether surgery is an option.There has been good progress on a slow and steady pace, with heavy emphasis on the word S-L-O-W.
In order to walk, you have to be able to have your foot at a neutral position - when you stand your ankle starts at a 90 degree angle.
They have been able to improve the left ankle (it has improved from bending only at a 45 degree angle to now bending at 70 degrees). But the right ankle appears to be stuck at 55 degrees no matter what they try. The Botox injections don't appear to have been particularly helpful.
Ironically, the left leg is the weaker leg, but has been responding better to treatment. Maybe because the muscles are weaker, they aren't fighting the process so hard? I don't know... They do say that the left leg might always need a brace or extra support, but that decision is well down the road.
The tendon and muscles of that right ankle are solid as rock and have not reponded well at all. He does have the ability to rotate his ankle and wiggle his toes, and put weight for limited periods of time on the balls of his feet, but every little bit of progress has been slow and painful going. They feel that even though there would need to be a recovery period of 8 to 12 weeks where little or no rehab therapy could be done on the leg that gets surgery, it would be worth the trade off and move him further and faster down the road to recovery than if they just continued as they are now.
If he has surgery on one leg, they will likely discharge him from the inpatient setting and he will continue therapy on an outpatient basis on the other leg.
Tom was seen by a specialist at Toronto Western Hospital today. He is an orthopedic surgeon who specializes in the ankle and foot. His first concern is whether or not Tom has good enough blood flow to the feet to allow healing post surgery, so the next step is that they will arrange for a test of blood flow and circulation. The test is called an "Arterial Doppler" test, it is essentially an ultrasound of your arteries.
He will also be referred to yet another orthopedic surgeon at Toronto Western who will take a look at the knee and hip contractures, and give an opinion as to whether any additional surgeries will be necessary at some point.
Acommodation update: Tom and Mike move into a furnished sublet apartment on December 1, in Jeanine's building (I know, you all feel sorry for Jeanine right? But she says she is happy about it!) For a couple of weeks Mike will actually have to camp at Jeanine's, as we need to vacate RMH by mid November.
I found the apartment on Kijiji, of all things. No address was listed, but when I read the description, I was almost certain it was Jeanine's building - so I emailed for more information. It seemed almost like Fate or God stepping in when I saw the response! What a terrific blessing to have found downtown accommodation near the hospitals and near (VERY VERY near) Jeanine!
We have signed a sublet for 3 months at a minimum, and then will renew on a month to month basis. Toronto Rehab's musculoskeletal rehab proghram is moving from Hillcrest (where he is now) to the downtown clinic on University Avenue in Toronto in January. It is only a few blocks away from Jeanine's apartment, so during the outpatient phase it would be nice and handy.
The thinking is that once both legs are back at full strength they would readmit him full time. Still unknown how many months it would be after that point.
The doctors are very encouraging, they say his youth and motivation are huge, huge factors in his recovery. Of course all these ideas depend on what is physically possible.
(Please continue to pray with us that the doctors will be led to the right answers for Tom, and that it will be possible for him to achieve his dream of walking again.)
Naturally this news makes me a bit sad - I miss my boys - but it will all be worthwhile if Tom can resume the life he ought to have. We hope that's God's plan, too.
Love to you all, thanks for checking in,
Tom's Mom
Monday, October 22, 2012
Remission! Love, love, love that word!
I don't know how many blog followers we still have, I have been on such an extended hiatus! Sorry for that - there has been so much going on!
So: the last time we talked, Mike had an appointment to be seen by a sarcoma specialist and an orthopaedic surgeon/oncologist at the end of July.
The oncologists were very encouraging! To be sure that there is no active cancer, they ordered a full spine MRI. Unfortunately it couldn't be scheduled immediately, so we returned home for awhile. The spinal MRI was completed on August 21 back in Toronto, and from it, the doctor was able to confirm that there is currently no active cancer. In fact, they would call it a remission.
!!
I can't adequately describe the emotional tidal wave that washed over us that day. Joy, yes - but a kind of sorrow for what preceded it.
But we are so grateful to be heading in 180 degrees the opposite direction of where we were going a year ago!
Tom was then referred to a physiatrist - an M.D. who is a rehabilitation specialist. He has been admitted as an inpatient in Toronto Rehab's Hillcrest facility. The physiatrist and his team are doing everything they can to help Thomas reach his next goal: to walk again. It remains to be seen to what extent that is possible, but Tom is giving it his all. Progress has been painful, but slow and steady - and it is exciting to think of the possibilities.
For those who may be familiar with Toronto, the facility is about near St. Clair West subway station, it's about a block away from Casa Loma. Tom stays in the facility Sunday through Thursday nights, and has been able to come 'home' to Ronald McDonald House on Friday afternoons and stay for the weekend.
Mike travels back and forth every day - the combined walk and subway ride is about 40 - 45 minutes each direction from Ronald McDonald House.
We have truly enjoyed staying at Ronald McDonald House. The RMH in Toronto opened a new facility in Fall 2011, and is the largest in North America. It's a beautiful building, and is right downtown near all the hospitals. Their mandated purpose is for critically ill children being treated at Sick Kids Hospital. But because they weren't at full capacity, they made an exception for us and we have been making that our home base.
The need has been increasing over the past few weeks, and given the fact that Tom doesn't strictly speaking meet their criteria, they have asked us to make other arrangements as soon as possible. We are scrambling a little bit, but have a lead on possible accommodations, and have faith that somehow it will all fall into place.
I've recently started back part time at work. That's also something that's hard to describe.... I do love the people that I work with and for, and I know that this will be good for me, and for our family in the long run. But it is so hard to not be with my boys, and not be fully in the know - although I am sure that they are doing just fine without me. In fact, maybe that's what bothers me so much!
Tom's taking his English 30B online while he's in Toronto. If he returns in time for second semester, he'd like to finally officially complete his Grade 12 in spring 2013.
Mike's is keeping Tom on track, and helping with his therapy exercises and 'torture'. Tom's legs had atrophied quite badly. The Achilles tendon that runs down the back of the calf is several inches shorter than normal, and his body has developed severe contractures or shortening of the muscles, tendons and ligaments.
The first job has been to get him to the point where he can put his feet down flat on the floor. While Tom sits on the edge of his bed doing homework or watching TV, Mike ties his legs back to a point where he feels a good stretch. When it gets too intense for Tom, he unties it. The goal is to eventually have his legs tied back for 6 hours of the day. As Tom's foot gradually stretches, he is to put more and more weight down on it from the seated position. All of this will help to stretch that Achilles tendon.
Mike also massages in a prescription numbing cream that desensitizes the nerve endings into his feet and calves at least 4 times a day. The therapists have taught us the technique and level of pressure they want us to use. We are doing what we can to stretch the tendon, and loosen up the joints. The other goal of the massage is to help remind the brain that the feet are there and they have a purpose. Without the numbing cream Tom was finding his feet painfully over sensitive, and it does seem to be helping.
Tom had an EMG or electromyography test of both legs done a couple weeks ago to assess the function of his nerves and muscles. The right leg's muscle and nerve functions are almost normal, which means that once we overcome the contractures, the leg will be functional - which is very exciting. The muscles on the left leg are significantly weaker, and indications of nerve damage. The damage was likely caused by the chemo and radiation, in addition to the tumor itself. Tom had tumors in both thighs, but the damage was more extensive on the left side so this seems logical. The good news is that there are signs that the body has begun repairing the nerve damage on the left side. The doctor feels that the left leg will likely need a brace, at a minimum.
In order to overcome the contractures, they have also injected botulinum toxin into the backs of his quad muscles. Yes, you heard me - - Botox. The idea is that it will help the muscles loosen out of their contracture, and then free up the body's tendons and ligaments to stretch and revert to a more normal state. They hope to get him into a standing frame as soon as possible, so that the weight of his own body together with gravity can help stretch everything out. If the Botox isn't enough, surgery may be needed to lenghten the Achilles tendon.
The Botox was only injected on October 17, so it's too soon to know if surgery will be required.
One surgical procedure that will be scheduled is the removal of his Power Port, which was used for delivery of his chemo and to administer fluids and blood transfusions....waiting to hear more on that front.
Meanwhile, Laura and I are holding down the fort. We miss Mike's cooking but I will say that Laura shares Mike's creative genes when it comes to cooking! Nancy's back in school in Minot, and Jeanine started at Ryerson in Toronto this fall. (Poor Jeanine: go all the way across the country for school if you like, but you can't outrun your family!)
We've had lots of family visiting us - although not for the best of reasons. Mike's mom was in a car accident in July. Although she has largely recovered, she does still suffer from a brain injury sustained in the crash. Her short term memory has declined significantly, and she just doesn't seem like herself. At present, she is in Wascana Rehab in Regina, and is currently waiting a longer term placement. We are praying for a better outcome for her, and visit her as often as we can.
One bit of sadness - we are mourning our dear Neesha - our puppy passed away on September 19th. She would have been 16 this month. I was taken aback by how much her passing affected me. She was a member of our family - not one of the children exactly, but a companion and friend to each of us in her own way. I don't know if this is theologically sound or not, but I feel certain we will meet again in heaven. (And if there's no dogs in heaven, I'm not sure I want to go!)
Whew - sorry for the long post!
So that's the highlights - and some of the lowlights - of what has gone on for Tom and our family over the past few months.
Please join us in praying for Tom's continued healing and recovery, would you? (Thank you so much!) We don't know why we are so lucky, but are truly grateful for our good fortune.
I will try to not wait so long to report again, and post some pics so you can get a sense of what the Toronto scene is like.
Hope all is well with you,
Tom's Mom
So: the last time we talked, Mike had an appointment to be seen by a sarcoma specialist and an orthopaedic surgeon/oncologist at the end of July.
The oncologists were very encouraging! To be sure that there is no active cancer, they ordered a full spine MRI. Unfortunately it couldn't be scheduled immediately, so we returned home for awhile. The spinal MRI was completed on August 21 back in Toronto, and from it, the doctor was able to confirm that there is currently no active cancer. In fact, they would call it a remission.
!!
I can't adequately describe the emotional tidal wave that washed over us that day. Joy, yes - but a kind of sorrow for what preceded it.
But we are so grateful to be heading in 180 degrees the opposite direction of where we were going a year ago!
Tom was then referred to a physiatrist - an M.D. who is a rehabilitation specialist. He has been admitted as an inpatient in Toronto Rehab's Hillcrest facility. The physiatrist and his team are doing everything they can to help Thomas reach his next goal: to walk again. It remains to be seen to what extent that is possible, but Tom is giving it his all. Progress has been painful, but slow and steady - and it is exciting to think of the possibilities.
For those who may be familiar with Toronto, the facility is about near St. Clair West subway station, it's about a block away from Casa Loma. Tom stays in the facility Sunday through Thursday nights, and has been able to come 'home' to Ronald McDonald House on Friday afternoons and stay for the weekend.
Mike travels back and forth every day - the combined walk and subway ride is about 40 - 45 minutes each direction from Ronald McDonald House.
We have truly enjoyed staying at Ronald McDonald House. The RMH in Toronto opened a new facility in Fall 2011, and is the largest in North America. It's a beautiful building, and is right downtown near all the hospitals. Their mandated purpose is for critically ill children being treated at Sick Kids Hospital. But because they weren't at full capacity, they made an exception for us and we have been making that our home base.
The need has been increasing over the past few weeks, and given the fact that Tom doesn't strictly speaking meet their criteria, they have asked us to make other arrangements as soon as possible. We are scrambling a little bit, but have a lead on possible accommodations, and have faith that somehow it will all fall into place.
I've recently started back part time at work. That's also something that's hard to describe.... I do love the people that I work with and for, and I know that this will be good for me, and for our family in the long run. But it is so hard to not be with my boys, and not be fully in the know - although I am sure that they are doing just fine without me. In fact, maybe that's what bothers me so much!
Tom's taking his English 30B online while he's in Toronto. If he returns in time for second semester, he'd like to finally officially complete his Grade 12 in spring 2013.
Mike's is keeping Tom on track, and helping with his therapy exercises and 'torture'. Tom's legs had atrophied quite badly. The Achilles tendon that runs down the back of the calf is several inches shorter than normal, and his body has developed severe contractures or shortening of the muscles, tendons and ligaments.
The first job has been to get him to the point where he can put his feet down flat on the floor. While Tom sits on the edge of his bed doing homework or watching TV, Mike ties his legs back to a point where he feels a good stretch. When it gets too intense for Tom, he unties it. The goal is to eventually have his legs tied back for 6 hours of the day. As Tom's foot gradually stretches, he is to put more and more weight down on it from the seated position. All of this will help to stretch that Achilles tendon.
Mike also massages in a prescription numbing cream that desensitizes the nerve endings into his feet and calves at least 4 times a day. The therapists have taught us the technique and level of pressure they want us to use. We are doing what we can to stretch the tendon, and loosen up the joints. The other goal of the massage is to help remind the brain that the feet are there and they have a purpose. Without the numbing cream Tom was finding his feet painfully over sensitive, and it does seem to be helping.
Tom had an EMG or electromyography test of both legs done a couple weeks ago to assess the function of his nerves and muscles. The right leg's muscle and nerve functions are almost normal, which means that once we overcome the contractures, the leg will be functional - which is very exciting. The muscles on the left leg are significantly weaker, and indications of nerve damage. The damage was likely caused by the chemo and radiation, in addition to the tumor itself. Tom had tumors in both thighs, but the damage was more extensive on the left side so this seems logical. The good news is that there are signs that the body has begun repairing the nerve damage on the left side. The doctor feels that the left leg will likely need a brace, at a minimum.
In order to overcome the contractures, they have also injected botulinum toxin into the backs of his quad muscles. Yes, you heard me - - Botox. The idea is that it will help the muscles loosen out of their contracture, and then free up the body's tendons and ligaments to stretch and revert to a more normal state. They hope to get him into a standing frame as soon as possible, so that the weight of his own body together with gravity can help stretch everything out. If the Botox isn't enough, surgery may be needed to lenghten the Achilles tendon.
The Botox was only injected on October 17, so it's too soon to know if surgery will be required.
One surgical procedure that will be scheduled is the removal of his Power Port, which was used for delivery of his chemo and to administer fluids and blood transfusions....waiting to hear more on that front.
Meanwhile, Laura and I are holding down the fort. We miss Mike's cooking but I will say that Laura shares Mike's creative genes when it comes to cooking! Nancy's back in school in Minot, and Jeanine started at Ryerson in Toronto this fall. (Poor Jeanine: go all the way across the country for school if you like, but you can't outrun your family!)
We've had lots of family visiting us - although not for the best of reasons. Mike's mom was in a car accident in July. Although she has largely recovered, she does still suffer from a brain injury sustained in the crash. Her short term memory has declined significantly, and she just doesn't seem like herself. At present, she is in Wascana Rehab in Regina, and is currently waiting a longer term placement. We are praying for a better outcome for her, and visit her as often as we can.
One bit of sadness - we are mourning our dear Neesha - our puppy passed away on September 19th. She would have been 16 this month. I was taken aback by how much her passing affected me. She was a member of our family - not one of the children exactly, but a companion and friend to each of us in her own way. I don't know if this is theologically sound or not, but I feel certain we will meet again in heaven. (And if there's no dogs in heaven, I'm not sure I want to go!)
Whew - sorry for the long post!
So that's the highlights - and some of the lowlights - of what has gone on for Tom and our family over the past few months.
Please join us in praying for Tom's continued healing and recovery, would you? (Thank you so much!) We don't know why we are so lucky, but are truly grateful for our good fortune.
I will try to not wait so long to report again, and post some pics so you can get a sense of what the Toronto scene is like.
Hope all is well with you,
Tom's Mom
Monday, July 9, 2012
Nominating a couple of true game changers
Recently, I had the honour of nominating two local heroes for an award as "Game Changers" in our community. If they are selected as the national winners of this contest, the Scotiabank will award their charity with $100,000 and tickets to the Grey Cup. I can't think of a more deserving charity than the Chris Knox Foundation - who, as you no doubt know by now, have done so much for not only the Fahlman family, but also for so many other families affected by cancer.
Won't you please follow the link (shown below underneath the Chris Knox Foundation logo) and vote, and then share it with your friends? We have a lot of catching up to do, the top charity right now has over 2,600 votes, and the Chris Knox Foundation only has 1 vote. Mine. Yikes! Please help me help a great cause!!
PLEASE NOTE THAT YOU CAN VOTE ONCE PER DAY FOR EVERY EMAIL ADDRESS! Please vote every day, if at all possible!
Here's what I wrote in my nomination:
In 2007, Sharla and Kim's son Chris Knox was undergoing cancer treatment. He desperately wanted to see the sold out Labour Day Classic. With the help of the cancer clinic and a local radio station, Chris' wish was fulfilled. Linebacker Mike McCullough even brought him down to the locker room, where Coach Austin presented him the game ball – a memory Chris and his family would always treasure. After the Western Final, a fan spontaneously began a campaign on the call-in show to send Chris to the Grey Cup in Toronto, the Riders' first in 10 years. Rider fans stepped up to support Chris’ Grey Cup dream. Chris, slightly uncomfortable at being singled out for this honour, felt strongly that more young patients also deserved a chance to go. Rider fans ended up sending 10 other children and 20 family members to the Grey Cup in Toronto, where the Riders pulled off a thrilling victory. Sadly, less than two weeks later, with his parents and girlfriend at his side, Chris passed away. Chris had a dream that other young people like him would have the opportunity to create similar happy memories. Sharla and Kim, whose only other child, Dustin, had died in a car accident in 2001, could have been forgiven for not having the heart to carry out Chris’ request. Instead, they banded together with a wonderful group of volunteer board members and formed the Chris Knox Foundation – a Foundation that has gone on to do amazing work in the Saskatchewan community.
When a child or young person is in cancer treatment, 'normal' becomes a foreign concept. School and work activities are replaced by treatment, hospital stays and scans. The family's income is typically significantly reduced in order for one or more parent to be available as advocate and caregiver for their child. Siblings often feel neglected and family time is almost non-existent. As a result of the financial and emotional pressures on the family, outings to concerts, games and shows become a distant memory. Having the opportunity to plan fun activities helps young cancer patients have something to look forward to, whatever their stage of treatment. For families whose loved one is lost to the disease, these outings create precious memories of a special time when they could set their cares and worries aside, despite being in the midst of treatment and illness. The Foundation continues to support these young people beyond their initial diagnosis, including if necessary, those patients placed in Palliative Care. Their nomination comes from a family who personally came to know Kim and Sharla through the work of the Chris Knox Foundation, as a result of their son’s cancer diagnosis. Kim and Sharla, together with the Chris Knox Foundation and its supporters, have helped so many cancer patients and their families overcome the challenge of having little to look forward to and enjoy in the midst of serious illness.
Through the work of the Foundation, hundreds and hundreds of ticket requests have been granted to young cancer patients and their families. In addition to the direct benefit to these patients and families, the Foundation, through these ticket purchases, has directly supported art, culture and sport. Ticket requests have been granted for all kinds of events - cultural events like ballet, concerts and musicals, and sporting events like the World Curling finals, the World Junior Hockey championships as well as (naturally) Saskatchewan Roughrider home games. In addition, a different group of young people has attended the Grey Cup each year since 2007, all decked out in Green and White. Each of them, together with an accompanying family member, have enjoyed the trip of a lifetime, showing their Rider Pride across Canada - whether or not the Riders were in the big game! Sharla and Kim, together with the Foundation’s Board and supporters, have created a lasting legacy in memory of their son Chris. They have created something amazing, a real game changer for young cancer patients and their families.
------------
Please follow this link and vote! While you are on the site, you can also enter to win a pair of tickets to the 100th Grey Cup game for yourself as well.
Thanks so much,
Tom's Mom
Won't you please follow the link (shown below underneath the Chris Knox Foundation logo) and vote, and then share it with your friends? We have a lot of catching up to do, the top charity right now has over 2,600 votes, and the Chris Knox Foundation only has 1 vote. Mine. Yikes! Please help me help a great cause!!
PLEASE NOTE THAT YOU CAN VOTE ONCE PER DAY FOR EVERY EMAIL ADDRESS! Please vote every day, if at all possible!
Here's what I wrote in my nomination:
In 2007, Sharla and Kim's son Chris Knox was undergoing cancer treatment. He desperately wanted to see the sold out Labour Day Classic. With the help of the cancer clinic and a local radio station, Chris' wish was fulfilled. Linebacker Mike McCullough even brought him down to the locker room, where Coach Austin presented him the game ball – a memory Chris and his family would always treasure. After the Western Final, a fan spontaneously began a campaign on the call-in show to send Chris to the Grey Cup in Toronto, the Riders' first in 10 years. Rider fans stepped up to support Chris’ Grey Cup dream. Chris, slightly uncomfortable at being singled out for this honour, felt strongly that more young patients also deserved a chance to go. Rider fans ended up sending 10 other children and 20 family members to the Grey Cup in Toronto, where the Riders pulled off a thrilling victory. Sadly, less than two weeks later, with his parents and girlfriend at his side, Chris passed away. Chris had a dream that other young people like him would have the opportunity to create similar happy memories. Sharla and Kim, whose only other child, Dustin, had died in a car accident in 2001, could have been forgiven for not having the heart to carry out Chris’ request. Instead, they banded together with a wonderful group of volunteer board members and formed the Chris Knox Foundation – a Foundation that has gone on to do amazing work in the Saskatchewan community.
When a child or young person is in cancer treatment, 'normal' becomes a foreign concept. School and work activities are replaced by treatment, hospital stays and scans. The family's income is typically significantly reduced in order for one or more parent to be available as advocate and caregiver for their child. Siblings often feel neglected and family time is almost non-existent. As a result of the financial and emotional pressures on the family, outings to concerts, games and shows become a distant memory. Having the opportunity to plan fun activities helps young cancer patients have something to look forward to, whatever their stage of treatment. For families whose loved one is lost to the disease, these outings create precious memories of a special time when they could set their cares and worries aside, despite being in the midst of treatment and illness. The Foundation continues to support these young people beyond their initial diagnosis, including if necessary, those patients placed in Palliative Care. Their nomination comes from a family who personally came to know Kim and Sharla through the work of the Chris Knox Foundation, as a result of their son’s cancer diagnosis. Kim and Sharla, together with the Chris Knox Foundation and its supporters, have helped so many cancer patients and their families overcome the challenge of having little to look forward to and enjoy in the midst of serious illness.
Through the work of the Foundation, hundreds and hundreds of ticket requests have been granted to young cancer patients and their families. In addition to the direct benefit to these patients and families, the Foundation, through these ticket purchases, has directly supported art, culture and sport. Ticket requests have been granted for all kinds of events - cultural events like ballet, concerts and musicals, and sporting events like the World Curling finals, the World Junior Hockey championships as well as (naturally) Saskatchewan Roughrider home games. In addition, a different group of young people has attended the Grey Cup each year since 2007, all decked out in Green and White. Each of them, together with an accompanying family member, have enjoyed the trip of a lifetime, showing their Rider Pride across Canada - whether or not the Riders were in the big game! Sharla and Kim, together with the Foundation’s Board and supporters, have created a lasting legacy in memory of their son Chris. They have created something amazing, a real game changer for young cancer patients and their families.
------------
Please follow this link and vote! While you are on the site, you can also enter to win a pair of tickets to the 100th Grey Cup game for yourself as well.
Thanks so much,
Tom's Mom
Thursday, June 14, 2012
JOYFUL, JOYFUL
Tom has an appointment with Dr. Peter Ferguson, Orthopedic Oncologist, and Dr. Abha Gupta, Oncologist on July 30th at Mt. Sinai Hospital in Toronto.
I don't know the logistics of the trip yet, but am so excited to have news to share! I want to sing and cry and run and shout...so this video is my way of sharing my chaotic emotions with you all! We are keeping our hopes realistic, but still.....just the fact they want to see Tom in person is so encouraging!
Thank you for checking in on us, and for your continued love and support. If you are inclined to prayer, DON'T STOP NOW! (lol)
Seriously though --- I don't know what your particular faith perspective is, but I know that ours has forever been changed by Tom's journey with cancer. We have seen people at their best and at their worst. But thankfully, the vast, vast majority of his journey has involved us experiencing people at their very best.
We are doing our best to live in a way that honours the embarassment of Grace that God has bestowed on us.
I have learned that a crisis like this puts you at a crossroads in your faith life: either you give up on God - or you give it up to God.
And we've done both, sometimes both on the same day - but I am sure it's easy to guess which path gives us more peace, more hope. We pray to have the strength to keep choosing the path of peace and hopefulness, no matter what these docs in Toronto can or cannot do for our boy.
Grateful always,
Thomas' Mom
P.S. Jeanie has a great apartment now in Toronto, right across from Ryerson - couldn't be handier!
Saturday, May 5, 2012
The difference between a CT and an MRI
CT and MRI differ in two basic ways.
CT uses x-rays to detect and record the radiation absorbed by different tissues, and sends the data to a computer to transform into images. MRI does not use x-rays.
Instead, MRI employs a powerful magnetic field to monitor the nuclei of hydrogen atoms in water, the most abundant element in the body. When subjected to the magnetic field of an MRI, the hydrogen protons are knocked out of alignment and emit a radiofrequency signal that is detected by the MRI machine, which then processes the signals into images.
CT scans usually show little differentiation in soft tissues, but highlight solid structures, like calcium deposits or kidney stones.
MRI scans emphasize detailed tissue structures due to differences in water content.
Source: ehealthmd.com
Because Tom has the type of cancer that can move into either soft tissue or bony structures, both MRIs and CT scans have been used at different times. The main benefit for Tom is that a CT scan is usually much quicker and easier - both to get one scheduled, and to actually go through it.
CT uses x-rays to detect and record the radiation absorbed by different tissues, and sends the data to a computer to transform into images. MRI does not use x-rays.
Instead, MRI employs a powerful magnetic field to monitor the nuclei of hydrogen atoms in water, the most abundant element in the body. When subjected to the magnetic field of an MRI, the hydrogen protons are knocked out of alignment and emit a radiofrequency signal that is detected by the MRI machine, which then processes the signals into images.
CT scans usually show little differentiation in soft tissues, but highlight solid structures, like calcium deposits or kidney stones.
MRI scans emphasize detailed tissue structures due to differences in water content.
Source: ehealthmd.com
Because Tom has the type of cancer that can move into either soft tissue or bony structures, both MRIs and CT scans have been used at different times. The main benefit for Tom is that a CT scan is usually much quicker and easier - both to get one scheduled, and to actually go through it.
Thursday, May 3, 2012
Beyond Cancer
Now that we've moved forward on the consultation with Toronto - still no word back, by the way - we are starting to look at the other areas of Tom's development that need to be attended to.
I've done some research in the past week or so as to what Tom's requirements are to be able to officially graduate Grade 12.
As you may remember, Tom was diagnosed in June 2009, at the end of Grade 10. He had enrolled again in school in the fall of 2010, but then relapsed and had to withdraw again. So although he participated in the grad banquet with his peers last spring, he had not been able to to meet the requirements for his diploma.
He's been taking one class this semester, and is handling it well.
I talked with the principal of the Regina Board of Education's Summer School, a friend in Admissions at the U of R, and the vice principal for academics at Luther, and we have come up with the following plan:
Because Tom had completed his Grade 10, and will turn 19 (God willing!) in September, he will meet the eligibility requirement for an accelerated Saskatchewan Grade 12 diploma program called "Adult 12". The accelerated program waives the Grade 11 level prequisites - which may make the transition a bit challenging, but Tom is excited to go for it!
The class he is taking this semester counts toward his diploma, and if he enrolls in one Grade 12 level summer school class in July, he will only need 5 more credits - and then he can walk (or roll...) across the stage next spring to receive his diploma!
This accelerated program will not only give him a valid Grade 12 diploma, it also meets entrance requirements for the University of Regina.
The summer school program for a Grade 12 level class is a little more intense - class is in session every day for 3 hours at a stretch for the month of July.
But then he will have August off - which is a good thing because we'll have to get Nancy moved back to Minot and (possibly) move Jeanine to Toronto during August.
This is crazy stuff for us - to be actually planning for something that will take place not just weeks, but months away! For a long time, we just lived day to day. Then gradually, we began to live week to week. And now - we are actually thinking about events that will happen in a YEAR. It feels good, but scary!
Although there is still the specter of what might go wrong hanging over us, we are putting our trust in God and moving forward.
On the medical side of things: Tom has been feeling so good, that he asked the Palliative doctor whether he can begin reducing his baseline pain medication - so we have begun the gradual process of reducing his meds, week by week. We need to be careful not to move too quickly, as the side effects could be quite unpleasant, since he has been on pain medication so long.
We have even moved on to 'normal' medical appointments that don't involve the Cancer Clinic or the Palliative team!! (I know you are thinking: she really has to get out more, if this is exciting to her!) Tom hasn't seen a dentist in over 2 years, so we took him for a checkup and cleaning this week. Although there has been some damage to the enamel on his teeth, thankfully he has no cavities. Next week, he'll go for an eye exam. Pinch me - we are doing normal things!
As for myself, I am trying to get my own health under control and figure out where I go from here. Tom's health affects my health, and vice versa!
Everyone else is doing well - Nancy is stressed with finals at University, but excited to be coming home soon. Jeanine is waiting anxiously for word from Ryerson as to whether or not she's been accepted into their Fashion Communications degree program - she should find out any day now, actually. Laura is working hard, busy as ever - we hardly see her - and hoping to be accepted as a volunteer at Camp Circle of Friends, a summer camp for cancer kids and their sibs.
Mike has signed up for Golf 4 Cancer, a one day tournament on June 22 in support of the Canadian Cancer Society (follow the highlighted link if you are interested in sponsoring him or learning more).
And naturally, we are all signed up for Relay for Life on June 8. We are looking forward to Tom's next Survivor Lap - it sends chills down my spine, just thinking about it.
We are also thinking ahead to how we can support the Coast to Coast ride for Childhood Cancer that comes again in September.
Even though we are trying our best to move beyond cancer, you can surely tell by our activities that cancer has forever changed our lives. And maybe - dare I say - for the better.
Thanks again for checking in on us, we sure appreciate the ongoing support. May all be well with you and yours.
Take care,
Tom's Mom
P.S. Found out later the same week of writing this post that a) Jeanie has been accepted into Ryerson, and b) Nancy has found an apartment in Minot! My head is reeling with all that lies before us to get the two of them settled, but I am also very excited for both of them!
Hmmm...Does anyone have any connections in Toronto that could help us find housing for Jeanine close to Ryerson?? That seems to be our most immediate problem!
I've done some research in the past week or so as to what Tom's requirements are to be able to officially graduate Grade 12.
As you may remember, Tom was diagnosed in June 2009, at the end of Grade 10. He had enrolled again in school in the fall of 2010, but then relapsed and had to withdraw again. So although he participated in the grad banquet with his peers last spring, he had not been able to to meet the requirements for his diploma.
He's been taking one class this semester, and is handling it well.
I talked with the principal of the Regina Board of Education's Summer School, a friend in Admissions at the U of R, and the vice principal for academics at Luther, and we have come up with the following plan:
Because Tom had completed his Grade 10, and will turn 19 (God willing!) in September, he will meet the eligibility requirement for an accelerated Saskatchewan Grade 12 diploma program called "Adult 12". The accelerated program waives the Grade 11 level prequisites - which may make the transition a bit challenging, but Tom is excited to go for it!
The class he is taking this semester counts toward his diploma, and if he enrolls in one Grade 12 level summer school class in July, he will only need 5 more credits - and then he can walk (or roll...) across the stage next spring to receive his diploma!
This accelerated program will not only give him a valid Grade 12 diploma, it also meets entrance requirements for the University of Regina.
The summer school program for a Grade 12 level class is a little more intense - class is in session every day for 3 hours at a stretch for the month of July.
But then he will have August off - which is a good thing because we'll have to get Nancy moved back to Minot and (possibly) move Jeanine to Toronto during August.
This is crazy stuff for us - to be actually planning for something that will take place not just weeks, but months away! For a long time, we just lived day to day. Then gradually, we began to live week to week. And now - we are actually thinking about events that will happen in a YEAR. It feels good, but scary!
Although there is still the specter of what might go wrong hanging over us, we are putting our trust in God and moving forward.
On the medical side of things: Tom has been feeling so good, that he asked the Palliative doctor whether he can begin reducing his baseline pain medication - so we have begun the gradual process of reducing his meds, week by week. We need to be careful not to move too quickly, as the side effects could be quite unpleasant, since he has been on pain medication so long.
We have even moved on to 'normal' medical appointments that don't involve the Cancer Clinic or the Palliative team!! (I know you are thinking: she really has to get out more, if this is exciting to her!) Tom hasn't seen a dentist in over 2 years, so we took him for a checkup and cleaning this week. Although there has been some damage to the enamel on his teeth, thankfully he has no cavities. Next week, he'll go for an eye exam. Pinch me - we are doing normal things!
As for myself, I am trying to get my own health under control and figure out where I go from here. Tom's health affects my health, and vice versa!
Everyone else is doing well - Nancy is stressed with finals at University, but excited to be coming home soon. Jeanine is waiting anxiously for word from Ryerson as to whether or not she's been accepted into their Fashion Communications degree program - she should find out any day now, actually. Laura is working hard, busy as ever - we hardly see her - and hoping to be accepted as a volunteer at Camp Circle of Friends, a summer camp for cancer kids and their sibs.
Mike has signed up for Golf 4 Cancer, a one day tournament on June 22 in support of the Canadian Cancer Society (follow the highlighted link if you are interested in sponsoring him or learning more).
And naturally, we are all signed up for Relay for Life on June 8. We are looking forward to Tom's next Survivor Lap - it sends chills down my spine, just thinking about it.
We are also thinking ahead to how we can support the Coast to Coast ride for Childhood Cancer that comes again in September.
Even though we are trying our best to move beyond cancer, you can surely tell by our activities that cancer has forever changed our lives. And maybe - dare I say - for the better.
Thanks again for checking in on us, we sure appreciate the ongoing support. May all be well with you and yours.
Take care,
Tom's Mom
P.S. Found out later the same week of writing this post that a) Jeanie has been accepted into Ryerson, and b) Nancy has found an apartment in Minot! My head is reeling with all that lies before us to get the two of them settled, but I am also very excited for both of them!
Hmmm...Does anyone have any connections in Toronto that could help us find housing for Jeanine close to Ryerson?? That seems to be our most immediate problem!
Saturday, April 14, 2012
Two strikes
Nothing at Calgary.
Nothing at Edmonton.
Next: a doctor in Toronto will be asked to - if she is willing - to do a review of Tom's file and the raw scans (not just the radiology reports) and give us a second opinion as to whether or not there are any other options available to Thomas.
We're swinging for the fences and pray we connect on this one.
We would surely appreciate your continued prayers. I don't like this nagging cough Tom has and hope that our 'friend' Mr. Ewing's is not on the move. Of course, I think you never let your guard down. It's been over three years of worrying about every physical symptom and living on high alert. I don't know if that ever goes away. When is a cold just a cold? I don't know if it ever is, once they utter that word into existence in your life. You know the word I mean.
Tom has dreams of a normal life. One where he finishes his education, marries a great girl, and has a family - without a wheelchair if at all possible. His dream is to be a (fabulously successful) video game designer and then on his property build a fancy pool house for Grandma and Grandpa Fahlman to live. And help with the kids sometimes. (His sisters like this because I used tothreaten promise that our retirement plan was to live with each of our children for 1/4 of the year!)
These dreams may make no sense to the doctor who simply looks at the statistics.
Statistically speaking, Tom should not even be here to have this conversation with us.
We hope this makes the doctor in Toronto curious enough to want to take the time to look into his case more closely.
To be honest, it took a great deal of persuasion and persistence to get to this stage, so we are going all in on this pitch.
Please also pray that we hit a home run.
Thanks again for checking in on us, and for your continued love and support.
Tom's Mom
Update April 18, 2012:
Dr. Abha Gupta in Toronto, a staff oncologist with a special interest in sarcomas and adolescent oncology, and a frequently published author on the topic of Ewing's Sarcoma, has agreed to review his scans and his file. Praying that she takes a full, open-minded review of Tom's file and will have some recommendations.
The cough has lessened, but the chest still does not sound totally clear. To get a more clear picture of what's going on, a CT of his chest will be done this coming Friday (April 20). Praying that the chest continues to clear and this is not an advance of the cancer.
Update April 20, 2012:
The scan was completed quickly and easily, and the radiologist only did one pass, without contrast. They didn't think doing a second one with contrast dye was necessary. Now, I am by no means a radiologist, but our experience has been that they typically use contrast when they need to diagnose or measure an anomaly - i.e., a tumour. So the fact they didn't think the scan with contrast dye was needed is to us a good sign. (Fingers crossed!). Meanwhile, happy to report the cough has essentially disappeared and we aren't hearing a crackling noise. Prayer works! Keep it up!
Nothing at Edmonton.
Next: a doctor in Toronto will be asked to - if she is willing - to do a review of Tom's file and the raw scans (not just the radiology reports) and give us a second opinion as to whether or not there are any other options available to Thomas.
We're swinging for the fences and pray we connect on this one.
We would surely appreciate your continued prayers. I don't like this nagging cough Tom has and hope that our 'friend' Mr. Ewing's is not on the move. Of course, I think you never let your guard down. It's been over three years of worrying about every physical symptom and living on high alert. I don't know if that ever goes away. When is a cold just a cold? I don't know if it ever is, once they utter that word into existence in your life. You know the word I mean.
Tom has dreams of a normal life. One where he finishes his education, marries a great girl, and has a family - without a wheelchair if at all possible. His dream is to be a (fabulously successful) video game designer and then on his property build a fancy pool house for Grandma and Grandpa Fahlman to live. And help with the kids sometimes. (His sisters like this because I used to
These dreams may make no sense to the doctor who simply looks at the statistics.
Statistically speaking, Tom should not even be here to have this conversation with us.
We hope this makes the doctor in Toronto curious enough to want to take the time to look into his case more closely.
To be honest, it took a great deal of persuasion and persistence to get to this stage, so we are going all in on this pitch.
Please also pray that we hit a home run.
Thanks again for checking in on us, and for your continued love and support.
Tom's Mom
Update April 18, 2012:
Dr. Abha Gupta in Toronto, a staff oncologist with a special interest in sarcomas and adolescent oncology, and a frequently published author on the topic of Ewing's Sarcoma, has agreed to review his scans and his file. Praying that she takes a full, open-minded review of Tom's file and will have some recommendations.
The cough has lessened, but the chest still does not sound totally clear. To get a more clear picture of what's going on, a CT of his chest will be done this coming Friday (April 20). Praying that the chest continues to clear and this is not an advance of the cancer.
Update April 20, 2012:
The scan was completed quickly and easily, and the radiologist only did one pass, without contrast. They didn't think doing a second one with contrast dye was necessary. Now, I am by no means a radiologist, but our experience has been that they typically use contrast when they need to diagnose or measure an anomaly - i.e., a tumour. So the fact they didn't think the scan with contrast dye was needed is to us a good sign. (Fingers crossed!). Meanwhile, happy to report the cough has essentially disappeared and we aren't hearing a crackling noise. Prayer works! Keep it up!
Saturday, March 31, 2012
Not remission, but something else...
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| Image from "The secret to finding miracles where you least expect them" |
The MRI was completed under sedation on March 7. The radiologist used the findings from this MRI, the aborted attempt in February (when we had to call a halt because Tom was in too much pain), the CT in January and compared all this data to the scans taken last May
There's still so much medical jargon I don't understand, but the essential gist of it is there is very little change since May 2011. The tumor on the right femur has only grown by 4 mm (about the width of a CD case).
The radiologist felt that the activity that they were picking up on March's scans was more to do with red marrow reconversion than with a malignant infiltration.
From what I can understand from my online searches our bone marrow gradually converts as we age, changing from red to yellow. However, under some conditions, it will reconvert back to red - conditions where the body and the bone marrow are put under so much stress i.e., cancer treatment, GCSF injections, high dose chemo and stem cell rescue, etc., etc.
Tom's Dr. has talked to an adult sarcoma oncologist in Calgary, who unfortunately has not identified alternative possibilities for treatment. He will now discuss with Edmonton, and see if there are any leads.
In the meanwhile, Tom continues to take one class at Luther, and pool therapy. He has recently been able to move his left knee for the first time in months, and regained some movement in his right foot.
The CT and the MRI's done this year reconfirm the extensive bone damage caused by the treatment and a lack of blood supply to the bone, not to mention the cancer itself. So the increase in movement doesn't necessarily mean he will regain the use of his legs, but it is an encouraging sign!
Our oncologist feels this is not technically a remission, because Tom still has cancer. For lack of a better word, he would call it a miracle.
And even though I am an analytical type of gal, I am A-O.K. with a fuzzy word like "miracle". But, considering Tom has had no official treatment since April 7, 2011 - almost a year ago - and that we already were forced to contemplate the very real possibility of his death... well, let's just say, I have become much more comfortable with fuzzy concepts.
Although it seems illogical to even dare to hope that Tom will regain his ability to walk, complete his education and live a 'normal' life, we are daring to entertain that crazy hope. Let's face it, even the fact that he is ALIVE is illogical, according to the doctors!
Maybe the only logical conclusion is illogical: miracles are possible!
So maybe we need to be a little less logical and a little more trusting, a little more ready to believe that miracles - big and small - are all around us. I know we have seen so much kindness and generosity throughout this journey that we have felt surrounded by the protection of God's blessings. So thank you all for that, and for continuing to support us and check in on us. Your friendship means a lot to us.
Praying for continued miracles,
Thomas' Mom
Monday, February 27, 2012
Goodbye, Mom
I hope you don't mind - this post definitely doesn't fall under the "Story of Thomas" category. Thank you, Dear Reader, for humouring me, yet again.
It is hard to believe that it's been over a month since we said our final goodbyes to Mom.
It is hard to believe that it's been over a month since we said our final goodbyes to Mom.
For several weeks I have been so tired I felt like a drug addict - only sleep is my drug.... I think maybe I just pushed my endurance to the limit and got a little run down. Over the years I've gotten pretty close to that precipice of total exhaustion a few times before, but it's getting harder to claw my way back each time.
I took Mom's urn home with me to Rocanville, as I travelled down a couple days beforehand to finalize the arrangements. Some may not find this funny, but I joked that this would be one of the few times I ever drove Mom somewhere that she didn't have her feet braced on the floorboards and her hand clutching the 'Jesus Christ strap' (as she called it), while she gave a driving critique! I know, I know, I have a weird sense of humour. Once I got over being a little weirded out, it really was okay, and somehow fitting to be taking Mom home for the last time.
Before her death, I had a few days to get used to the idea that Mom's passing was inevitable, and going to happen very soon. So, I thought I was ready, you know, but I found out I really wasn't. Even though our roles have been reversed the last few years, I have never wanted my Mom so much as lately. I think what I miss is the Mom of my childhood - you know, when someone else had everything under control, it was their job to have the answers - even if you didn't like the answers. Now I am supposedly the one that has the answers? Who are we kidding!! And let's face it, it's hard to kiss your own boo-boos.
And no one, no one, is left who will light up when I come in a room and exclaim, "That's my daughter!"
We went through a bad time in our relationship as mother and daughter. Before she went into long term care, we struggled as a family with how best to help Mom, whose Alzheimer's was at that point undiagnosed, but was definitely manifesting itself in all kinds of ways. She needed our help, but at the same time, resented it. And in turn, if I am honest, it made me resent the fact that she needed so much help, because our kids were little and our house was so busy.
We went through a bad time in our relationship as mother and daughter. Before she went into long term care, we struggled as a family with how best to help Mom, whose Alzheimer's was at that point undiagnosed, but was definitely manifesting itself in all kinds of ways. She needed our help, but at the same time, resented it. And in turn, if I am honest, it made me resent the fact that she needed so much help, because our kids were little and our house was so busy.
The progression of Mom's disease kind of gave me my mom back - she forgot the hard times in her life and completely lived in the moment. She kept the ability to joke and tease, and remembered songs and music. Our relationship healed, and we both let go of any lingering resentment.
As things progressed, it was fortunate that memories of those who'd left this world too early or disagreements we'd had faded away, but at the same time it seemed so cruel that the disease indiscriminately stole the memories of people she loved and happier times.
That's the shitty part - you can't choose which memories will survive and which will die in this memory game version of Russian Roulette. For me - for example - I would lose the memory of multiplication tables (and all the dreary hours spent learning them) and keep the memories of trips every spring with Granddad Donaldson and my cousins to the valley to search out the first crocuses. But I won't get to pick either. If I have inherited the Alzheimer gene, I can only pray that it will be more kind than cruel.
There was a point during Mom's final days when I know she knew me and said goodbye in her own way. We were by ourselves at that particular moment, and I was sitting on the side of her bed. I noticed how furrowed her forehead was. She hadn't spoken a word in three days at that point, and it was hard to know if she knew what was going on or who was there. Worried she was in pain, I started talking quietly and caressing her face, smoothing the wrinkles out and just told her how proud I was of her, how hard she had worked her whole life, how much she had earned her rest and how many people were going to be so glad to see her. Suddenly a light dawned in her eyes and she reached up her hand to my face, and began smoothing my worried forehead! I started to cry and leaned down to kiss her on the cheek. She put her arm around me and patted my back! It was hard to say who was comforting who...
I hope that's a memory I get to keep.
Goodbye, Mom.
As things progressed, it was fortunate that memories of those who'd left this world too early or disagreements we'd had faded away, but at the same time it seemed so cruel that the disease indiscriminately stole the memories of people she loved and happier times.
That's the shitty part - you can't choose which memories will survive and which will die in this memory game version of Russian Roulette. For me - for example - I would lose the memory of multiplication tables (and all the dreary hours spent learning them) and keep the memories of trips every spring with Granddad Donaldson and my cousins to the valley to search out the first crocuses. But I won't get to pick either. If I have inherited the Alzheimer gene, I can only pray that it will be more kind than cruel.
There was a point during Mom's final days when I know she knew me and said goodbye in her own way. We were by ourselves at that particular moment, and I was sitting on the side of her bed. I noticed how furrowed her forehead was. She hadn't spoken a word in three days at that point, and it was hard to know if she knew what was going on or who was there. Worried she was in pain, I started talking quietly and caressing her face, smoothing the wrinkles out and just told her how proud I was of her, how hard she had worked her whole life, how much she had earned her rest and how many people were going to be so glad to see her. Suddenly a light dawned in her eyes and she reached up her hand to my face, and began smoothing my worried forehead! I started to cry and leaned down to kiss her on the cheek. She put her arm around me and patted my back! It was hard to say who was comforting who...
I hope that's a memory I get to keep.
Goodbye, Mom.
Saturday, January 21, 2012
Grandma D.
My mom, Elaine Donaldson, died on Thursday morning.
It's a little raw to write about now, but maybe later I'll add her eulogy - but there's lots to do right now.
It is the natural order of things that you will one day bury your parents. Mom had a long, full life. I wasn't quite prepared for the fact that I would suddenly feel, at my age, like an 'orphan', but there it is.
As well, a toddler whose family we met in Calgary died earlier in the week. Her parents are dealing with an unnatural order of things. My heart hurts for her family. This is a true tragedy, and it brings up my own fears and emotions.
And yet, at the same time, I feel comfortable in saying "O death, where is thy sting? O grave, where is thy victory?" [1 Corinthians, 15:55]
For both these funerals, the families will gather to honour our loved one, and most importantly, to celebrate the gift of their life. Whether short or long, life is a GIFT. We are all 'terminally ill', but life here on this Earth is not the point of our existence. It is our temporary home, to be sure, but it's important to live life like it matters.
I will close for now with a poem that my Mom selected for my Dad's funeral, when he died of lung cancer in 1999. She found herself widowed for the second time in her life, and I know these words gave her comfort:
Don't Quit
When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.
Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.
Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.
- Author unknown
Thanks again for your continued care and concern, and prayers for Thomas. We appreciate it all so much!
Elaine's Daughter
It's a little raw to write about now, but maybe later I'll add her eulogy - but there's lots to do right now.
It is the natural order of things that you will one day bury your parents. Mom had a long, full life. I wasn't quite prepared for the fact that I would suddenly feel, at my age, like an 'orphan', but there it is.
As well, a toddler whose family we met in Calgary died earlier in the week. Her parents are dealing with an unnatural order of things. My heart hurts for her family. This is a true tragedy, and it brings up my own fears and emotions.
And yet, at the same time, I feel comfortable in saying "O death, where is thy sting? O grave, where is thy victory?" [1 Corinthians, 15:55]
For both these funerals, the families will gather to honour our loved one, and most importantly, to celebrate the gift of their life. Whether short or long, life is a GIFT. We are all 'terminally ill', but life here on this Earth is not the point of our existence. It is our temporary home, to be sure, but it's important to live life like it matters.
I will close for now with a poem that my Mom selected for my Dad's funeral, when he died of lung cancer in 1999. She found herself widowed for the second time in her life, and I know these words gave her comfort:
Don't Quit
When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.
Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.
Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.
- Author unknown
Thanks again for your continued care and concern, and prayers for Thomas. We appreciate it all so much!
Elaine's Daughter
Monday, December 26, 2011
Good People
The world today can be a scary place
Hard to keep your faith in the human race
We're running out of trees and were running out of space
But we'll never run out of good people
Ask 'em for a shovel and they'll dig you a hole
Put the coffee on, call you in from the cold
If you get lost they'll show you where to go
Even give you a ride... good people
Good People aren't hard to find
Right around the corner at "The End of the Line"
It's true
Good people got peace of mind
I'd like to spend some time with you
A man is nothin' if he ain't got a friend
Down and out, not a penny to spend
But the bells above will ring in the end
For good people
Rich and poor are born to be free
Fly around the world or sail the seven seas
But there's no place I would rather be
Than here right now with good people
Hard to keep your faith in the human race
We're running out of trees and were running out of space
But we'll never run out of good people
Ask 'em for a shovel and they'll dig you a hole
Put the coffee on, call you in from the cold
If you get lost they'll show you where to go
Even give you a ride... good people
Good People aren't hard to find
Right around the corner at "The End of the Line"
It's true
Good people got peace of mind
I'd like to spend some time with you
A man is nothin' if he ain't got a friend
Down and out, not a penny to spend
But the bells above will ring in the end
For good people
Rich and poor are born to be free
Fly around the world or sail the seven seas
But there's no place I would rather be
Than here right now with good people
Written by: Séan McCann, Paul Lamb, Recorded by Great Big Sea
It's Boxing Day, 2011. Lots of people are out in the stores, looking for deals. But I have everything I need right here at home, thanks to a lot of good people. Tom's got some true friends who've stood by him all the way through, as does our whole family ~ not to mention the new friends we've made along the way, and the wonderful organizations who've been such a blessing to us.
Just before Christmas Dr. Haq approached Tom to discuss doing new scans and tests (unsolicited by us, by the way). He's amazed at Tom's progress and would like to investigate whether he is in fact in remission, and whether there are any clinical trials he might be eligible for. Early in January, he'll get Tom in for a CAT scan of the entire lower body and we'll take it from there.
A little back story on this: Tom and I had talked and thought about this a lot in recent weeks - was he in remission? could more treatment be possible? I prayed about it a lot, unsure whether we should push this idea forward. In the end, the feeling the two of us got, was that we would take our cue from Dr. Haq. If he approached Tom to discuss this, then we would take that as a sign. And two days after we made that decision, Dr. H came to Tom to discuss that very thing. I had a little chill of excitement up my spine, I can tell you!
To be honest, I was dreading Christmas this year, because the docs had told us that Tom would likely not still be with us.
For him to now be well enough to be reevaluated is HUGE. We're excited, but somewhat anxious about all the unknowns. There is no treatment without side effects. And even if there is a trial that seems suitable, there is also the possibility that his 'performance standard' score will exclude him many if not most, because he has lost his mobility - which lowers your score. While Tom can do a certain amount to strengthen and tone himself, weight bearing activities are out of the question. So there are lots of challenges and decisions ahead. But we say, BRING IT ON!
Thanks for checking in and keeping us in your prayers. We need every single one of 'em!
Looking forward, 'cautiously optimistic', to a New Year,
Thomas' Mom
Wednesday, December 7, 2011
It comes without ribbons!... it comes without tags!... it comes without packages, boxes, or bags!
For those who may be wondering...
The bloodwork and chest x-ray from December 1 both look really good!
Tom's hemoglobin and platelet counts are still lower than what's considered 'normal' - and have been ever since treatment stopped at the end of April. It just shows how much his immune system has been beaten down, as his bone marrow has still not recovered, even though he's been off treatment for nearly 8 months.
The clinic staff continue to be surprised by how well Tom is. It would be so nice to know if he is actually in remission, but the only way to know that would be with more in-depth tests - and are they really worth it? We can tell how well he is doing by how he looks and feels.
And I guess part of me is nervous of the possibility of finding out something to the contrary.
The radiologist who read the chest x-ray did make note of diminished lung capacity, but that is essentially a by-product of the sedentary life Tom's been forced to leave since losing the use of his legs. When our bodies don't do very much (or any) activity that puts greater demand on our lungs, the capacity is diminished.
I think that is true with the whole human body, actually. Use it, or lose it. It's true with brain capacity for sure - I have been on leave for some time now and I can tell my brain is shrinking! Or maybe I'm just not as smart as I thought I was - that's certainly also a possibility.
And look at our hearts - not just the muscle itself - but the metaphorical heart. The less demand we place on our hearts, the less capacity we have to care about others and make a difference. Like the Grinch, whose heart was two sizes too small.
I'd like to share a thought borrowed from a fine young man and cancer patient who we met on last year's trip to the Grey Cup, posted recently on his Facebook wall:
Certainly, our family has been showered with kindness, and we've truly been blessed.
At the same time, it's easy to be thankful for the good things, but entirely more challenging to give thanks for the hardships in life. Some days it's hard to see this whole package as a blessing.
So that's my challenge too, this holiday season, to make sure my heart only gets Grinch-like in a good way - by growing (at least) three sizes.
Thanks again for checking in on us, and keeping Tom and our family in your prayers.
May your kindness rebound back to you and bless you tenfold,
Thomas' Mom
The bloodwork and chest x-ray from December 1 both look really good!
Tom's hemoglobin and platelet counts are still lower than what's considered 'normal' - and have been ever since treatment stopped at the end of April. It just shows how much his immune system has been beaten down, as his bone marrow has still not recovered, even though he's been off treatment for nearly 8 months.
The clinic staff continue to be surprised by how well Tom is. It would be so nice to know if he is actually in remission, but the only way to know that would be with more in-depth tests - and are they really worth it? We can tell how well he is doing by how he looks and feels.
And I guess part of me is nervous of the possibility of finding out something to the contrary.
The radiologist who read the chest x-ray did make note of diminished lung capacity, but that is essentially a by-product of the sedentary life Tom's been forced to leave since losing the use of his legs. When our bodies don't do very much (or any) activity that puts greater demand on our lungs, the capacity is diminished.
I think that is true with the whole human body, actually. Use it, or lose it. It's true with brain capacity for sure - I have been on leave for some time now and I can tell my brain is shrinking! Or maybe I'm just not as smart as I thought I was - that's certainly also a possibility.
And look at our hearts - not just the muscle itself - but the metaphorical heart. The less demand we place on our hearts, the less capacity we have to care about others and make a difference. Like the Grinch, whose heart was two sizes too small.
I'd like to share a thought borrowed from a fine young man and cancer patient who we met on last year's trip to the Grey Cup, posted recently on his Facebook wall:
"This is my challenge to my friends and family...I love this idea! I found a list that might be helpful called 29 Ways to Carry Out Random Acts of Kindness (see link). And I'm sure you can come up with some easy and painless ways to be kind to others and exercise your heart!
Certainly, our family has been showered with kindness, and we've truly been blessed.
- Pastor Cory stopped in last week with lunch for Tom, Mike and I from "5 Guys Burger and Fries", and a visit.
- Our dear friend Geri has enlisted Tom's help in a quest to find "Regina's Best Cinnamon Buns", and visited yesterday with this month's installment.
- Miss Morgan came to visit on Saturday, with a lovely poinsettia and a birthday card.
- My wonderful hubby gave me a ticket to the Kurt Browning skating show in Moose Jaw last week.
- Little Bald Angels sent some terrific gift cards that will help make the holidays a little brighter.
- Auntie Lottie treated Tom and I to lunch earlier this week, and she made us a set of lovely Christmas napkins.
- Grandma Betty's daughter, Helen, brought me some fresh California walnuts and gave me a hands-on lesson to make the little walnut rolls that Grandma used to make (a little bit fussy to make, but so worth it).
- My cousin Wendy sent a little care package to Miss Nancy down in Minot - Canadian delicacies such as Cheezies and an Aero bar.
- Friends who've helped us find the skilled tradespeople to put baseboards on and get the front entryway repainted.
- Dr. Mark Anderson and the staff at Luther College made seating arrangements to accommodate Tom's wheelchair for our family at the Christmas Candlelight service on Sunday - this concert is such a wonderful holiday tradition!
At the same time, it's easy to be thankful for the good things, but entirely more challenging to give thanks for the hardships in life. Some days it's hard to see this whole package as a blessing.
So that's my challenge too, this holiday season, to make sure my heart only gets Grinch-like in a good way - by growing (at least) three sizes.
Thanks again for checking in on us, and keeping Tom and our family in your prayers.
May your kindness rebound back to you and bless you tenfold,
Thomas' Mom
Thursday, November 17, 2011
Great Uncle Stan
Stan was born in Gerald, SK on January 31, 1925. He was predeceased by his parents, six brothers and five sisters. Stan is survived and will be greatly missed by his loving wife of 50 years, Lottie; three children, Wendy Tebb, Cathy (Ron) Bosley, Rob (Katherine) Tebb; four grandchildren, Ryan Bosley, Amanda Bosley (Justin Pichette), Kayla Tebb (Matt Paul), Lee Tebb; one great granddaughter Savannah Pichette; two sisters, Edith Everitt, Elaine Donaldson; numerous nieces, nephews and in-laws. Funeral Service will be 1:00 p.m., Friday, November 18th at St. Luke's Anglican Church, 3233 Argyle Road, Regina, SK with Rev. Christopher Snook and Rev. Don Wells presiding. Internment will be 3:30 p.m., Regina Memorial Gardens Cemetery, Highway #1 East. Special thanks to Dr. Vipin Patel and the Nursing Staff on 3D at the Pasqua Hospital for the excellent compassionate care provided to Stan and his family. Memorial donations can be made to the Canadian Diabetes Association, Heart & Stroke Foundation of SK, or Alzheimer Society of SK.
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Uncle Stan (my mom's brother) was hard working, creative and loving. A family man, his wife and children, and his extended family, were the most important people in his life. There wasn't anything he wouldn't have done for his family. He and Auntie Lottie were like the home for wayward nieces and nephews (including yours truly). I think for both sides of their family, they are like the central hub for visits and information!
Uncle Stan worked hard for Ipsco for many years. Never content to sit still, he and Auntie Lottie ran a busy craft business from their home. Working with wood and resin, they created ornamental and practical items, ranging from clocks and plaques to beautiful tables. Uncle Stan thrived on working the craft shows, meeting people and negotiating with these new friends.
He and Auntie Lottie also headed up projects to create family cookbooks. Ours acts as a family tree as well as a source of good home cooking - I can't tell you how many times my Mom would tell me to "Check the cookbook!" to check a date or name of one of our large extended family.
The Tebb family of 14 siblings and their spouses, has now dwindled to two sisters, and two sisters-in-law - it's so hard to believe....
We hope to take Mom to the service tomorrow, but I know it will be a challenge because Alzheimer's has essentially destroyed her short term memory - and made some of her long term memories hard to access. I went to her nursing home to tell her today. Even though I had to write it out for her to help her understand, the old Elaine surfaced enough to ask "Should we be phoning anyone to let them know?" (It was kind of cute, because Mom used to spend a lot of time on the phone with her siblings and extended family, staying in touch and on top of all the news there was to know!).
I know we will see Uncle Stan again - only next time he will be himself, without the effects of the recent strokes. That twinkle will be back in his eyes, and I have no doubt he will have an invention or two to show us.
Since the time I began this blog, we've marked far too many passages. Heaven is getting crowded and it's overwhelming at times to reflect on the losses.
And yet, while we mourn the loss of another good, kind and gentle man, we celebrate a life well lived.
He has earned his rest.
May you rest in peace, dear Uncle Stan.
Love always,
Mary-lin (as he used to call me)
Sunday, November 6, 2011
Bloodwork Test #425 (and counting)
This month's bloodwork did show an elevated white count again, well above what is considered normal. He had been having a mild fever - above Tom's normal of 36.5 C - but less than 38 C (100 F) for a few nights running and a nagging little cough. No signs of a cold though. Dr. H thinks it's most likely an infection. The chest x-rays were kind of useless, as they were underexposed. Now Tom is on an antibiotic for 10 days, and it does seem to be helping. The cough is almost gone and the fever is still sometimes there at night, but in the lower ranges. We will hope for the best. An infection would be good. Better than an advance of Mr. Ewing, that is.
So how do I know this is the 425th blood test?
Every time we get a copy of Tom's blood count results, there is a requisition I.D. on the top of the page. It made sense to me that each requisition has a unique I.D., but I never looked too closely at that number.
I finally realized this month that it is SEQUENTIAL when I was filing blood test 850000425 in the binder....in front of test 850000424. Aren't I just a bright and shiny penny?
I flipped back through the binder and sure enough, every blood count check in this Health District follows that pattern, going back to Tom's diagnosis. And it only took me just over 2 years to figure that out.
I feel silly, as someone who used to be pretty analytical in my day job, to miss this little detail. But then, I have always been more focused on what the actual numbers and acronyms on the report meant. (That's my story and I'm sticking to it!)
.... Now that I think of it, this could be as many as the 525th, not the 425th, because things are done differently in Calgary - parents don't get copies of the reports. They have preprinted little forms and will write down the WBC (White Blood Cell), Hemoglobin, Platelets and ANC (Absolute Neutrophil Count). These darn little slips of paper were real easy to lose, so I don't even know exactly how many times Tom's blood has been tested since diagnosis... But I would guess that they tested him at least 50 times in Calgary.
So let's say they take about 20 ml each time - usually only 10 ml for the actual sample, but some is drawn and discarded first. Sometimes, when extra tests are ordered, they draw more blood. I don't know how it feels to Tom, but just imagine that 9 to 10 litres of your blood has been drawn for testing! Weird, right?
Anyways, just one of those odd things I think about sometimes.
So what have we been up to? Tom stays busy, visiting with friends and getting out as often as he can. This past month he saw a couple of movies. Tom's taste in movies ranged from the emotional 50/50 (the story of a young man with a rare cancer) to the ridiculous A Very Harold & Kumar 3D Christmas (the title says it all!). We were honoured with VIP seating at Luther College's production of Fiddler on the Roof earlier this month. And he also made it to a Halloween party with some of his classmates from Luther last week. The days and weeks seem to pass quickly, punctuated by the monthly medical checkups, where we mentally 'hold our breath' till we get the results.
Each month we wonder: is the outcome truly inevitable? Could they be wrong? Why can't they be wrong?
Dr. H says it's important to be realistic, but I think realism sucks. We have been doing 'real' and it's a drag. Why can't we be unrealistic? What's so bad about that? The outcome may be the same, but at least we'll have had a better time in the meanwhile. So, while certain heavy discussions have been necessary, others have been put on hold indefinitely. Of course, this month's blood work is a little jolt, but there's not much we can do but hang on and ride the roller coaster.
Mike's been busy getting the vehicles and the yard ready for winter. Normally, we don't use the back door once snow flies because the deck is rather slippery. But this year, now that the back door is Tom's access point to the house, we needed to do something about that! Mike bought some adhesive treads and applied them to each step and the decking in front of the door - a 3M product called Safety-Walk. Now the trick will be to see if they last. We had our first snowfall last night, and unfortunately, I don't know how durable these strips are going to be when the shovel goes over them.
Mike seemed to enjoy getting the yard ready for winter using his new toy...er, I mean, yard tool: a leaf blower! So our yard looked very neat and tidy this fall, without the usual backbreaking effort of raking leaves! However, the shoveling will all too soon replace the raking. Mike says it's time for the girls to bring home some big strapping young boyfriends - ha!
We have room now to park 2 (two!) vehicles in the garage, so that will help with the congestion on our street a little bit. By the way, a friend gave us a great tip: if you have a garage door opener that is really old (like ours) you can often still buy a remote for it online! Since we had lost the opener for one side of the garage, that was a really valuable tip!
Our daughters each own their own car, including snow tires. As well, we have snow tires for our van and car. In addition, we purchased snow tires for the rented wheelchair van - so we now store six sets of tires all the time! No wonder we feel like are running out of storage space! Mike finished the wheelchair ramp for the garage side door, and stored the lawnmower for the season. The snowblower has been winterized and is ready to go. Knowing snow was in the forecast, last night when we brought Tom home from a movie with his pals Austin and Kristian that we used our back alley and garage access for the first time in months! It was a momentous occasion!
The City has moved from back alley garbage bins to individual curbside pickup bins for each household. Our only concern now is that maybe the city won't run a snowplow down the back alley as often as they used to, and that could be tough for us to get in or out... but I guess we'll deal with the problems as they arise.
We are still somewhat concerned about snow and ice making the wheelchair lift dangerous, so have ordered a custom cover to keep it clear. Unfortunately, it won't be ready till this coming week, but at least it will be here soon. If you haven't seen what this lift looks like, here's a link to see the info on a Bruno Vertical Platform Lift. In Tom's case, since he can no longer bend his knees, we had to take the safety gate off. When we drive him onto the platform when leaving the house, there is nothing to stop him from slipping forward besides his wheelchair brakes - so if the platform were too icy, it could be a very scary thing!
We realize how blessed we are to be in a position of needing these preparations for winter. It's a good problem to have, relatively speaking.
Coming up this month, we mark the passing of both Tom's grandpa's, and Remembrance Day.
We're looking forward to our 'adopted' son Kent appearing in Globe Theatre's production of Robin Hood. More movies, no doubt... and visits...and hopefully not too much snow.
In December, we are hoping to help put together a kid's Christmas Party for all the clinic families in December. Naturally, we are excited for Christmas, and for Nancy's return for a break.
Hope all is well with each of your households. I'll touch base again after next month's bloodwork, at the latest.
Thanks for continuing to take an interest in us, and keeping our boy in your thoughts and prayers.
Stay warm,
Thomas' Mom
So how do I know this is the 425th blood test?
Every time we get a copy of Tom's blood count results, there is a requisition I.D. on the top of the page. It made sense to me that each requisition has a unique I.D., but I never looked too closely at that number.
I finally realized this month that it is SEQUENTIAL when I was filing blood test 850000425 in the binder....in front of test 850000424. Aren't I just a bright and shiny penny?
I flipped back through the binder and sure enough, every blood count check in this Health District follows that pattern, going back to Tom's diagnosis. And it only took me just over 2 years to figure that out.
I feel silly, as someone who used to be pretty analytical in my day job, to miss this little detail. But then, I have always been more focused on what the actual numbers and acronyms on the report meant. (That's my story and I'm sticking to it!)
.... Now that I think of it, this could be as many as the 525th, not the 425th, because things are done differently in Calgary - parents don't get copies of the reports. They have preprinted little forms and will write down the WBC (White Blood Cell), Hemoglobin, Platelets and ANC (Absolute Neutrophil Count). These darn little slips of paper were real easy to lose, so I don't even know exactly how many times Tom's blood has been tested since diagnosis... But I would guess that they tested him at least 50 times in Calgary.
So let's say they take about 20 ml each time - usually only 10 ml for the actual sample, but some is drawn and discarded first. Sometimes, when extra tests are ordered, they draw more blood. I don't know how it feels to Tom, but just imagine that 9 to 10 litres of your blood has been drawn for testing! Weird, right?
Anyways, just one of those odd things I think about sometimes.
So what have we been up to? Tom stays busy, visiting with friends and getting out as often as he can. This past month he saw a couple of movies. Tom's taste in movies ranged from the emotional 50/50 (the story of a young man with a rare cancer) to the ridiculous A Very Harold & Kumar 3D Christmas (the title says it all!). We were honoured with VIP seating at Luther College's production of Fiddler on the Roof earlier this month. And he also made it to a Halloween party with some of his classmates from Luther last week. The days and weeks seem to pass quickly, punctuated by the monthly medical checkups, where we mentally 'hold our breath' till we get the results.
Each month we wonder: is the outcome truly inevitable? Could they be wrong? Why can't they be wrong?
Dr. H says it's important to be realistic, but I think realism sucks. We have been doing 'real' and it's a drag. Why can't we be unrealistic? What's so bad about that? The outcome may be the same, but at least we'll have had a better time in the meanwhile. So, while certain heavy discussions have been necessary, others have been put on hold indefinitely. Of course, this month's blood work is a little jolt, but there's not much we can do but hang on and ride the roller coaster.
Mike's been busy getting the vehicles and the yard ready for winter. Normally, we don't use the back door once snow flies because the deck is rather slippery. But this year, now that the back door is Tom's access point to the house, we needed to do something about that! Mike bought some adhesive treads and applied them to each step and the decking in front of the door - a 3M product called Safety-Walk. Now the trick will be to see if they last. We had our first snowfall last night, and unfortunately, I don't know how durable these strips are going to be when the shovel goes over them.
Mike seemed to enjoy getting the yard ready for winter using his new toy...er, I mean, yard tool: a leaf blower! So our yard looked very neat and tidy this fall, without the usual backbreaking effort of raking leaves! However, the shoveling will all too soon replace the raking. Mike says it's time for the girls to bring home some big strapping young boyfriends - ha!
We have room now to park 2 (two!) vehicles in the garage, so that will help with the congestion on our street a little bit. By the way, a friend gave us a great tip: if you have a garage door opener that is really old (like ours) you can often still buy a remote for it online! Since we had lost the opener for one side of the garage, that was a really valuable tip!
Our daughters each own their own car, including snow tires. As well, we have snow tires for our van and car. In addition, we purchased snow tires for the rented wheelchair van - so we now store six sets of tires all the time! No wonder we feel like are running out of storage space! Mike finished the wheelchair ramp for the garage side door, and stored the lawnmower for the season. The snowblower has been winterized and is ready to go. Knowing snow was in the forecast, last night when we brought Tom home from a movie with his pals Austin and Kristian that we used our back alley and garage access for the first time in months! It was a momentous occasion!
The City has moved from back alley garbage bins to individual curbside pickup bins for each household. Our only concern now is that maybe the city won't run a snowplow down the back alley as often as they used to, and that could be tough for us to get in or out... but I guess we'll deal with the problems as they arise.
We are still somewhat concerned about snow and ice making the wheelchair lift dangerous, so have ordered a custom cover to keep it clear. Unfortunately, it won't be ready till this coming week, but at least it will be here soon. If you haven't seen what this lift looks like, here's a link to see the info on a Bruno Vertical Platform Lift. In Tom's case, since he can no longer bend his knees, we had to take the safety gate off. When we drive him onto the platform when leaving the house, there is nothing to stop him from slipping forward besides his wheelchair brakes - so if the platform were too icy, it could be a very scary thing!
We realize how blessed we are to be in a position of needing these preparations for winter. It's a good problem to have, relatively speaking.
Coming up this month, we mark the passing of both Tom's grandpa's, and Remembrance Day.
We're looking forward to our 'adopted' son Kent appearing in Globe Theatre's production of Robin Hood. More movies, no doubt... and visits...and hopefully not too much snow.
In December, we are hoping to help put together a kid's Christmas Party for all the clinic families in December. Naturally, we are excited for Christmas, and for Nancy's return for a break.
Hope all is well with each of your households. I'll touch base again after next month's bloodwork, at the latest.
Thanks for continuing to take an interest in us, and keeping our boy in your thoughts and prayers.
Stay warm,
Thomas' Mom
Sunday, October 9, 2011
Lots to give thanks for!
We're thankful that Nancy and her friend Andrea made it home safely on Friday, and then back to school in Minot Sunday.
And thankfully, my brother Wayne and his family were able to join us for Thanksgiving Dinner on Saturday. We had lots of laughs and - literally - ended up ROTFL at one point. Long story - you had to be there....
And holy smokes, we are overflowing with thanks that our neighbours across the street let us use their oven and slow cookers since our stove element burnt out on Friday night!
We're also so grateful for the wonderful friends and family who continue to check in on us, help us and visit. You encourage us so much.
The cherry on top that we're really excited about is that Tom's chest x-ray of last week is clear, and the CT scan showed no lesions on his spine, above the low back area that we already know about. We're really thankful for that.
As mentioned previously, we increased Tom's pain meds two weeks ago, so were thinking we would find that the disease was on the move. We are pleasantly surprised that the disease seems to not have invaded his upper body - although I would say our reaction is tempered by the fact that CT or x-ray aren't suited to showing lesions in soft tissue, so if there were something there these tests wouldn't necessarily have shown it - but won't look at other tests until or unless his pain escalates.
Tom's blood work for this month is still within acceptable limits, although his white counts are somewhat elevated. He may be fighting a bug of some kind, but he's feeling quite well, all things considered. He'll get the flu shot this coming week as a precaution, as I believe the rest of us will as well.
We heard back from the Leisure centre on Friday and there is a lift we can use, so one day soon we will check out the pool!
We're moving closer to parking in the garage - but we seem to have lost the remote for one side of the double doors, and it turns out that motor is very old.... so old that you can't buy a new remote! I guess we can work around that, the main thing is to actually be able to get Mike's car and the wheelchair van in where it's warm for the coming winter season.
Mike's brother Bernie is coming out this way next weekend. He's friends with Dan Rashovich, who played for the Riders from 1987-1999. Dan is being inducted into the Plaza of Honour this coming weekend, and Mike will get to tag along to the dinner this Friday and to the game on Sunday with Bernie. I'm glad he's going to have some fun!
We're looking forward to watching the Rider game with friends tomorrow. Now here's hoping the Riders can give us something to be thankful for, too!
Thanks for checking in on us, we truly do appreciate (and are thankful) for everyone's support.
Happy Thanksgiving to you all!
Thomas' Mom
P.S. Something else I am thankful for: my husband, Mike! We celebrate our 26th Anniversary on October 12. I am truly blessed.
And thankfully, my brother Wayne and his family were able to join us for Thanksgiving Dinner on Saturday. We had lots of laughs and - literally - ended up ROTFL at one point. Long story - you had to be there....
And holy smokes, we are overflowing with thanks that our neighbours across the street let us use their oven and slow cookers since our stove element burnt out on Friday night!
We're also so grateful for the wonderful friends and family who continue to check in on us, help us and visit. You encourage us so much.
The cherry on top that we're really excited about is that Tom's chest x-ray of last week is clear, and the CT scan showed no lesions on his spine, above the low back area that we already know about. We're really thankful for that.
As mentioned previously, we increased Tom's pain meds two weeks ago, so were thinking we would find that the disease was on the move. We are pleasantly surprised that the disease seems to not have invaded his upper body - although I would say our reaction is tempered by the fact that CT or x-ray aren't suited to showing lesions in soft tissue, so if there were something there these tests wouldn't necessarily have shown it - but won't look at other tests until or unless his pain escalates.
Tom's blood work for this month is still within acceptable limits, although his white counts are somewhat elevated. He may be fighting a bug of some kind, but he's feeling quite well, all things considered. He'll get the flu shot this coming week as a precaution, as I believe the rest of us will as well.
We heard back from the Leisure centre on Friday and there is a lift we can use, so one day soon we will check out the pool!
We're moving closer to parking in the garage - but we seem to have lost the remote for one side of the double doors, and it turns out that motor is very old.... so old that you can't buy a new remote! I guess we can work around that, the main thing is to actually be able to get Mike's car and the wheelchair van in where it's warm for the coming winter season.
Mike's brother Bernie is coming out this way next weekend. He's friends with Dan Rashovich, who played for the Riders from 1987-1999. Dan is being inducted into the Plaza of Honour this coming weekend, and Mike will get to tag along to the dinner this Friday and to the game on Sunday with Bernie. I'm glad he's going to have some fun!
We're looking forward to watching the Rider game with friends tomorrow. Now here's hoping the Riders can give us something to be thankful for, too!
Thanks for checking in on us, we truly do appreciate (and are thankful) for everyone's support.
Happy Thanksgiving to you all!
Thomas' Mom
P.S. Something else I am thankful for: my husband, Mike! We celebrate our 26th Anniversary on October 12. I am truly blessed.