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 +78

A lot has happend since our last post. Chris had his third IVIG treatment on Sunday and had his blood tested again (White Blood Cells was 5.1!). We also hit a huge milestone on Sunday: 10,000 hits on our blog from over 20 countries!

Today was Chris' monthly check up and it went exceptionally well. As you can see, Chris is still recovering really fast (the last two photos are less than two weeks apart!).

In fact, he was approved to go back to work next week, which is WAY ahead of schedule. His doctor told us that transplant patients usually require three to six months before returning back to work, with most patients taking closer to six months to be ready. However, she really looked impressed when Chris told her that he was working out on the elliptical for an hour each day and lifting weights. She assured us that as long as Chris was feeling up to it, there was no health risk for Chris going back to work this early.

However, while Chris is feeling much better, he did get a little push last week in the form of a letter from SunLife Financial. Chris was denied long-term disability covereage due to a condition we didn't know about in their policy. Chris' work changed their coverage on long-term disability last June. SunLife Financial has a pre-existing condition that once an employee gets long-term disability coverage, they need to have a 13 week period in the first year when they do not require medical treatment.

Well Chris had an appointment to get information about the transplant in July, which was 12 weeks and 4 days before he started the procedure. Even though Chris wasn't "treated" for anything at the time, SunLife Financial includes all physican consultations as treatments and denied Chris coverage. It was definetly a set back, but luckily Chris was close to the point that going back to work was a possibility. In the meantime, Chris is working on writing an "I hate SunLife Financial" song that we can post on YouTube that will surely go viral.

Finally, our last update is about the MS Walk that we are participating in this May. Chris and I, in addition to some of our friends and family members, will be walking 5 km to raise money for the Multiple Sclerosis Society of Canada. The MS Society  is responsible for the funding of this MS trial and for other research funding in Canada. Last May, there was no way that Chris could walk 5km due to a severe relapse, and we are really excited that he will be able to participate.

We just wanted to post a link to our fundraising page to anyone that is interested in donating to the MS Society. It would really mean a lot to us if you can donate anything, and it will mean even more to the other 75,000 Canadians with MS.

Here is the link to our Team Glazier MS Walk  fundraising page:
http://msofs.mssociety.ca/2011WALK/SponsorTeam.aspx?&PID=1246591&L=2

Two month update

Chris on Day +66 after his transplant and
feeling great!

Chris was officially two month post-transplant on Sunday (February 13). He has really improved leaps and bounds from our last update. He does 30 minutes of cardio each day and is starting to lift weights again (and  much more than 5 lbs now!) He can even keep up with me when I go on shopping trips, which is an accomplishment for any man, bone marrow transplant or not.

We have his next appointment on March 1 and Chris is going to discuss with his doctor about going back to work soon. Originally they had discussed June 2011 as a probable timetable, but at the rate he is going, it is hard to imagine being at home for another three months.

Even though he has made such hugh improvements in his endurance and strength, he is mostly proud about his hair growth. His hair is officially growing back on his head (lot of fine hair!) and for some reason his facial hair, especially his moustache, is growing back thicker than before. He needs to shave it almost every day now! Weird.

In terms of his MS symptoms we are trying to be alert of any signs of relapses or progression and maybe even  some signs of improvements. No relapses, no progression. In fact, Chris' last relapse would have been April/May 2010 (he had mitoxantrone in July to try and prevent relapses and progression prior to transplant). I get super excited just thinking about this.

 In terms of improvement, we are actually starting to pick up on little things. Prior to the transplant, if Chris used the elliptical, his muscle in his left leg would spasm and shake. Since he has started working out on the elliptical again after the transplant, he hasn't experienced any muscle spasms on his left leg.  It may seem really minimal, but it is such a hopeful sign for us.

Day +49



Chris' progression over the last six months. Top left: Chris looking healthy at the beginning of
August. Top right: Chris not long after his first dose of Cyclophosphamide in October.
Bottom left: Chris one month post-transplant (January 13). Bottom right: Chris at his IVIG
transfusion (January 30).



Chris went in to have his IVIG yesterday. It was our first time in the Medical Day Care unit since he had his stem cell collection back in October. The IVIG is used to help immune recovery after a bone marrow transplant and can also help prevent infection. We were told that it isn't crucial, but when they started this study on MS patients ten years ago they incorporated IVIG transfusions into the protocol. Since they are trying to keep all of the MS patients on the same treatment plan, Chris will get these transfusions every month for likely the next six months. At the same time we were told that if we need to delay a transfusion because we are going away for a weekend or have important plans, it is not a big deal.

The first transfusion was a breeze for Chris. The only possible side effect was headaches and Chris didn't even get that. His only real complaint is that he is seriously getting sick  of needles. Taking into account that Chris was getting two needles every hour for some days while in the hospital, we think that he may been poked over 500 times during this procedure. A consideration for anyone thinking about doing this procedure, be prepared to have a lot of needles.

A lot of the nurses that work in the Medical Day Care unit also work in the unit that Chris was admitted to (5 West). A bunch of the nurses recognized Chris and commented on how much better he was looking (we included some photos that show Chris' progression.) They also relived some of Chris' finer moments. I don't know how much Chris likes being referred to as the patient that had "those weird reactions to the drugs" and having some of the nurses joke about his drug induced escapades. I, however, enjoyed it thoroughly.




Day +44

So it looks like it will be awhile before we blog again.

Chris went in for his doctor's appointment yesterday and he moved from once a week appointment to once a month. He is recovering really well and as long as he remains negative for CMV, he can continue to have monthly appointments and monthly IVIG treatments. Chris' second IVIG treatment will be in February, but we don't have the day yet.

His doctor really emphasized that Chris needed to start doing some cardio. The problem with it being the winter (it was -30 this week) is that it is really unappealing to go outside. I have suggested that shovelling the driveway is great cardio, but I don't think he is buying it. 

Chris's white blood cell count was down on Tuesday: 5.4 This is still in the normal range, but not as shockingly high as before.

Platelets: 150, which are now in the normal range. I can now go back to punching him when he says things that make me mad.

Hemoglobin: 118

Chris still has not shown any new signs of his MS. It was around this time last year that we realized how bad Chris' MS was becoming. We had gone skating on the Rideau Canal, Canada's largest outdoor skating rink and Chris for the first time was unable to skate. Chris had played hockey for ten years. He had even taught me how to skate on our first date. But when we went to skate that day he was holding on to me for support. He fell pretty badly a few times and we ended up giving up halfway and taking a cab back to our car. It was after that day that we became obsessed with figuring out a way to stop this from progressing more. It's crazy to think the difference a year can make.

Day +39

It was nice not going to the hospital today.

It was also nice getting Chris' results. Chris tested negative for CMV in his last test. He will still need to stay on his anti-virals and continue to be tested once a week for the next few months, but it was a relief to know that it is under control for now.

We also asked about Chris' high white blood cell count. They told us that there was a chance that his high white blood cell count could quite possibly be due to an infection. But as long as Chris continues to not have a fever and is feeling well, we don't need to worry about it. Unless Chris' white blood cell count spikes outside the normal range, we don't need to worry about anything.

It is also possible that Chris just has good bone marrow. He is young and other than his MS really healthy, so maybe he really is just really good at growing stem cells and white blood cells. I guess everyone has a talent.

It's a good thing that Chris is doing better because I am unfortunately back at work on Monday. As terrible as this procedure has been, it has been a nice little honeymoon spending litterally all day every day together (minus a two day break) since we were married. Even though I am working from home, it will be an adjustment for Chris and he is taking suggestions for a new hobby to help pass the time.

Chris got an X-box Kinect for Christmas, and he started doing some "personal training" with it yesterday. He lost a lot of muscle during the procedure. Shirts that use to be really tight around his arms are now really loose. He was only able to do bicep curls and shoulder presses with 5 lbs weights when he was doing 30-35 lbs (40 lbs on his good days) before the treatment. He did a ten minute workout routine and was sore the next day. It was still a huge difference from a few weeks ago when he would get winded going up the stairs.

We are back at the hospital on Tuesday for another check up and blood work and Chris will need to schedule his IVIG. He gets this treamtent once a month (he had it on Day +7) and it helps prevent infection and boost the immune system.

Day +36

We have good news and bad news again.

Chris' counts were up today. Way up. Shockingly high.

Platelets: 100 (150-450 is normal)
We were just hoping for him to be over 50, so that he would start his new antibiotic.

Hemoglobin: 118 (140-180 is normal)

And Chris' WBC is....drum roll, please....8.6

That's insanely high.

Now, we got these results over the phone, so I am not sure if this spike is normal. We have read other people's progress online and no one seemed to have a spike like this. While I am sure that if that number was troublesome, we would be notified about it or be going in to the hospital again, a high white blood cell count usually means an infection. I also learned (thanks to Google) that pregnancy in the final month can also be linked with heightened white blood cells, so this could support my earlier theory that I think Chris is pregnant ( he was getting morning sickness and tired all of the time).

Speaking of infection... we thought we would find out today if Chris had responded well to the new anti-viral he was on and if his CMV levels were down. Well it turns out that while they conducted the test today, we don't learn the results until Friday.
Now we are waiting another three days to find out what the next steps are. This was the bad news.

To help pass the time Chris is having another MRI tonight at 10:00 pm. They wanted to check to make sure that his abscesses healed, and that he doesn't need any further surgery. Chris has been over pain medication for about a week now, so we are really hopeful that he was able to fix himself.