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
Wednesday, November 7, 2012
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