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.

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.

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

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

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