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!

Day +106

A lot has changed over the last month, especially in terms of Chris' health.


Since I am his wife I might be biased, but I think
Chris is looking pretty good! Look at that hair!



After having such a positive appointment last month, Chris went back to work on March 7 (less than three months after his transplant). Since his doctor recommended that he take a graduated approach, Chris worked three days that week, four the following week and then worked a full week last week. Really, looking back, we figure that Chris could have just gone back full-time. He has never really felt that tired (no more than usual after a work day) and has been able to jump right back into things.

A lot of his clients (Chris works in engineering) didn't know that he had been on a leave of absence. Since the majority of Chris' construction projects take place in the spring and summer, it is not uncommon for Chris not to meet with anyone during the winter. On his first week back he met with one of his main clients and they commented on his lack of hair by asking if Chris had lost a bet. I am assuming this because they had no idea what Chris had been through and thought his buzz cut had been a personal choice. The protective wife in me, however, would like to give them a hard time for being so insensitive. I think he looks pretty cute.

Chris is still working out, but has slowed it down a bit since his knee started to hurt him. He was up to doing 80 minutes on the elliptical, but is only doing weights until his knee is back to normal. The knee that hurts is, of course, his left knee (the leg that was affected by his MS).

On Sunday, Chris went in for his monthly IVIG treatment and since his regular BMT appointment was today, they ended up doing some blood work, so that we would have his results for his appointment.

Despite feeling better, Chris' bloodwork through us for a loop. We had already been told that they were going to discharge Chris from the BMT program and send him to the MS clinic. However, when they went to check his bloodwork the whole computer screen was full of red numbers. All of Chris' counts were MUCH lower:

White blood cells: 2.1 (normal 4.3 -10.8)
Platelets: 77 (normal 150-450)
And then remember that we stopped listing his neutrophils because they were so high that it didn't matter, well they had crashed down to 0.8 (1.8 -7). Chris wasn't allowed to leave the hospital until they were 0.5.
So needless to say we were a little concerned at first.

They retested Chris' blood again today and his white blood cells and platelets were higher than Sunday (3.5 and 85) and we are still waiting to get his neutrophil count, which will have likely risen too.

His doctors weren't 100 per cent sure why his counts were low. The one explanation is Chris had a mild allergic reaction to my paren't dog when we went to visit last weekend, and if he had any inflammation his body could have attacked and caused a drop in his counts. But since they aren't sure and Chris' counts are still low, we did not get to leave the BMT program and will need to wait to transfer to MS clinic.

The main reason we wanted Chris to be transferred to MS clinic is that we are really excited for him to have an MRI, so that we can see if there are any early signs of it working. Chris had an MRI of his head right after of the transplant when they were concerned he might have a brain infection, so we will really be able to see if anything has progressed since the transplant. While Chris has not had any visible relapses, it is nice to have the proof that this procedure was really worth it.

In other news, there have been a couple of exciting announcements in MS research that we thought we would share for those who are interested:

- The Canadian government launched a national monitoring program for MS patients in Canada to better gauge how MS progresses and which treatments work and don't work. It will be really interesting if this system will monitor Canadians that undergo this treatment.
http://www.thestar.com/news/canada/article/959100--ottawa-to-set-up-national-ms-surveillance-system?bn=1

- The first oral MS treatment, Gilenya,  has been approved in Canada. While not a cure, this is a disease-modifying drug that has been shown to reduce the relapses by 54 per cent. While Chris is no longer on any treatment plan, this news is really exciting for MS patients that require and respond to disease-modifying treatments as I remember how much Chris hated taking three needles a week.

http://mssociety.ca/en/research/medmmo_20110310.htm

Chris' doctors are still working on their report on their clinical trial. While Chris will not be included in the report, he did undergo the identical protocol, so we are really interested to see the report (and will be posting it on here!) to see how successful it was for everyone else.

It will also likely get more publicity for this procedure, which I think has gone under the radar. It wasn't until we were desperately searching the Internet that we find out about this procedure and even then, it was not clear that this was an option for Chris. There has been a lot of media coverage on the CCSVI procedure, so it would be great if this procedure became more well known to allow MS patients to understand their options

Day 9 - First Checkup

We had Chris' first checkup today, and everything went really well. No fever or signs of infection, strong vitals and he even gained one pound (it must be all the ice cream I am making him eat!)

He had a bunch of bloodwork done, and they are going to call and have us come in if anything is out of the ordinary. If we don't hear anything, we are set to go in for his second checkup on Tuesday. They also told us to be really careful over the weekend, because Chris will be at a high risk for infection.

Unfortunately, Chris is starting to get bone pain from the neupogen in his back, which apparently is one of the most common areas. So he has back pain, no hair and a foggy memory. Sometimes I think I am living with my Chris 50 years from now.

Oh and one other quick thing! We have had a lot of people ask if we wanted to keep this blog private or if it was okay to share with other people. When we first talked about having this blog, one of the main reasons was the fact that we learned so much about this procedure and other MS treatments through other patients' blogs. And the one thing we have really noticed since telling people about Chris' multiple sclerosis is that everyone we tell is only one or two degrees of seperation from someone who has MS. We have no problem with people sharing this blog, and it's nice to know that we have a lot of people following and rooting for Chris.