9 1/2 month post-transplant update

Chris at the top of the Duomo in Florence. Did we mention
that it was 462 steps to the top?

We celebrated Chris' 9 month transplant anniversary in style. To celebrate our first year wedding anniversary (September 18), we headed to Italy and are pleased to report the incredible changes we noticed in Chris' condition.

Prior to his transplant, Chris had a really hard time walking long distances, whether he was having a relapse or not. It was almost impossible for him in hot weather.

Italy definitely posed a challenge. Anyone who has been to Italy knows that to see all of the sites requires a lot of walking and a lot of stairs. And of course, there was a heat wave in Italy when we went and it was 34 degrees everyday.

But throughout our entire trip Chris had no problem walking, climbing and sometimes breaking into a jog (when he accidentally left our camera at the restaurant!).

The first thing we noticed was the lack of Chris' "floppy foot." (In case you hadn't figured, that is not a real medical term). It is caused by muscle weakness and tightening in Chris' left leg and the term "floppy foot" comes from the loud sound his foot makes when it flops on the ground. The sound is usually my first indication that Chris is having walking difficulty (because Chris never wants to admit it) and unfortunately it causes him to have really bad knee and hip pain.

Over the years we have both become accustomed to this noise when walking and it wasn't until a few days into the trip that we realized that we never heard it, not even once.  We even had days where we walked upwards of 20 km and climbed 800 stairs in 30 degree weather and Chris never once had to rest or felt any discomfort.

Even if you compare this to a few months ago when we were in Montreal (see last blog post), this is a huge difference. In Montreal, Chris found that the heat made it harder for him to walk and he did need to take a break because his "floppy foot" had kicked in and it was causing pain in his hip.

So throughout the trip we kept on trying to do things that Chris would have never been able to do before his transplant. It was a great vacation.

After coming back from Italy, we decided to head to the gym to burn off all of the pasta we ate and Chris decided to go on a treadmill for the first time in 5 years.

He isn't close to running marathons (yet!), but he was able to run for 15-30 second intervals at a pretty high pace. A year ago at this time, Chris couldn't even force his body to run.

We have also received Chris schedule for his research study. On December 4, Chris will have his 1 year MRI and then we will get to review it, along with Chris' previous MRIs, with Chris' neurologist on December 12.

We are really excited to see the difference in his MRI. With all of the changes that we are seeing, we know that there has to be a visible change in the lesions on Chris' brain. We are just curious to see how different his MRI will be from last year.

For us, the question is not "Did this procedure work?" its "How well did this procedure work?" I am hoping the Chris wins most improved.

6 Month Update

Happy 6 Month Birthday, Chris!
It has now been six months since Chris received his new stem cells. It's really hard to believe that it was that long ago.

How did he celebrate? By spending the day at the hospital being poked and prodded of course! (However, he can't really complain, because he did sign up to be part of the research study).

Today ended up being a pretty long day. We arrived at the hospital bright and early, so that Chris could go over the consent forms and ask questions about the study.

Next, he had a "Visual Evoke Potentials' test, which measures the time it takes for nerves to respond to stimulation. This test was at least entertaining (well, for me) as they stuck electrodes to Chris' head and had him stare at a red dot on a computer screen while the background was moving. There was a student there learning about the test, so I ended up getting a bit of a tutorial too! Chris wasn't allowed to listen or talk, so this test probably wasn't as entertaining for him.

After this, I got to hang out in the waiting room while Chris did a speed walking test, distance test, a peg tests (it is exactly how it sounds, Chris had to put pegs in holes) and then some math and cognitive tests. He tested me on some of the questions afterwards and I swear I would fail.

One of the tests was called a PASAT test, which assesses auditory information processing speed and flexibility, as well as calculation ability (it also sounds evil). The examiner will call out a number every 3 or 2 seconds and the patient must add each new digit to the one immediately prior to it.

For example the examiner would call out: 3 then 4 and then you would respond 7, then the examiner would call out 8 and you would need to remember the last number was 4 and call out 12. They repeat this 60 times.

Next, Chris has to do blood work (a lot of blood work, about 20 tubes) and a bunch of eye charts. He also had an Optical Coherence Tomography (OCT) test that measures the thickness of the nerve fibres in the retina of the eye. In order to do this test, Chris needed to have his eyes dilated, which also provided me with a lot of entertainment. It also meant that Chris needed to wear sunglasses for four hours afterwards and wasn't able to see anything upclose. Originally, he had scheduled three meetings after his hospital visit today, but he found out the hard way that he is pretty much out of commission for the day. I ended up needing to drive him around and dial his phone for him so he could cancel all of his meetings.

Finally, Chris had two neurological exams. One exam was from an unbiased neurologist,  who had never met Chris and did not know his history, and the other was with Dr. Freedman, who has evaluated Chris prior to the transplant. The reason for the unbiased neurologist is so that they don't know what to look for and can give a patient an EDSS score without knowing what score you had before.

We had a great experience when we met with Dr. Freedman as he already noticed a difference in Chris! Chris had an MRI after his transplant when he was still in the hospital, so he was able to compare this MRI to an MRI he had a year ago. He was able to show us parts on the scan where the lesions had shrunk. They were not drastically smaller, but the MRI was just under 6 months ago. Who knows what the lesions could look like now?

The best part was when he tested Chris' legs. Last year, when he was testing Chris' leg strength, Dr. Freedman was able to overpower Chris' left leg and push it to the ground. He had marked it down in his notes that Chris had moderate muscle weakness in his left leg. Today, he wasn't even able to tell the difference between Chris' two legs and had to check his notes to remember which leg was weaker. He seemed genuinely shocked that Chris had moderate muscle weakness in his leg before and only six months after his transplant, there didn't seem to be any difference.

We have tried to be really cautious in talking about Chris' improvement (mainly because we didn't want to jinx it), but he really does seem to be doing a lot better.

What a great birthday present!