Sunday, October 31, 2010

Day 18 - What is MS?

Happy Halloween Everyone!

We decorated the house today and are in costume as we speak (we are bikers! - yes, not very original, we know). Chris is still taking allergy medication for the hives that are still down both of his arms. He has also developed bruising down one arm, which we think is due to his low platelet level. We are planning on giving the hospital a call tomorrow just to make sure we have nothing to worry about.

Chris is currently at his "Nadir", which means the low point in time between chemotheraphy cycles in which you experience low blood counts. From this point onward his blood counts should be going up.

Recently we have been recieving a bunch of questions from people following our blog that they aren't 100 per cent sure what MS is and how giving Chris a new immune system will help. To be honest, Chris and I both had no idea what multiple sclerosis was when he was first diagnosed. And until things started getting more serious I didn't even really understand the science behind it.
So here is a quick rundown of how it works. Please keep in mind this is just my understanding from reading and talking to doctors so there may be some errors!

What is MS?
Multiple sclerosis (MS) is a disease which progressively injures the nerves of the brain and spinal cord. People without MS have nerve cells that are covered by an intact protective layer known as the myelin sheath. Nerve cells are made up of neurons that have a head called the nucleus and a long strand that is called the axon, which is covered in the myelin sheath. This covering helps to speed electrical signals in the brain. In people with MS, for an unexplained reason, the T-cells (which make up your white blood cells) recognizes the myelin in the brain and spine as a threat to the body and attacks it. This is known as demyelinization. When the myelin sheath thins and breaks down, the, electrical signals can't travel between the neurons.

Although the myelin can rebuild itself, the rate of demyelinization caused by MS is too rapid for it to keep up. The damaged parts of myelin are often called “lesions” or “plaques”.

Basically, you just need to think of a lamp: You have a lightbulb that recieves it signal from a copper wire. The wire is wrapped with plastic to protect it. If you start losing parts of the plastic the wire will start to rust and eventually the light won't be able to turn on.

This demyelinization can cause a wide range of symptoms such as:
- muscle stiffness or spasms
- cognitive problems (e.g., memory loss)
- dizziness and sensations of spinning
- mental health problems (e.g., depression)
- extreme tiredness
- difficulty walking
- headache
- paralysis
- bladder problems
- bowel problems
- hearing loss
- itching
- numbness and tingling
- pain
- seizures
- speech and swallowing problems
- shaking
- vision problems

MS has its most striking effect on motor and sensory neurons, which generally have long axons carrying information between the brain, spinal cord, and the rest of the body. Because these axons are longer, they have a greater need for the insulation myelin provides and are therefore most affected by its destruction.


What causes MS?
Nobody knows for sure what causes MS, but most scientists agree that it involves a combination of environmental and genetic factors. Different factors that are linked to MS include:

- Cold Climates/ Lack of Vitamin D: MS occurs most commonly in those living in northern climates. Apparently, where you spend the first 15 years of your life plays a role in your odds of developing MS. Canadians have one of the highest rates of multiple sclerosis in the world. (see map)

- Infection: Researchers believe that many autoimmune diseases are provoked by some kind of infection that may affect people differently who have a certain genetic makeup. The infection can trick your body's immune system into attacking your own tissues, even after the infection has gone.

- Family history: While scientisits have determined that there is no MS gene, research has shown that you are more likely to get MS if someone in your family has it.

 So there is my little (or not so little) explanation of MS. Hope it makes sense!

Saturday, October 30, 2010

Day 17

Good news! First we did not spend the night at the hosptial last night. It turns out Chris was just having some sort of allergic reaction. Second, Chris is now two weeks post chemo and still has a full head of hair and his tastebuds. He seems to be handling this chemo pretty well, which is maybe a good sign for the second half of his treatmet (for anyone in the medical profession who is reading this, please don't make fun of  us too much for being so naive).

We are gearing up for a big Halloween tomorrow. It is our first time that we are actually staying in and I am a little excited to be able to hand out candy to kids in the neighbourhood. We decided it would be best if Chris just watched from the top of the stairs. I don't care if I am being overly cautious. Children are full of germs. You just can't trust them.

We know we have been sending you lots of links to videos and articles, but we thought we would send you one more (and we promise to try and limit them in the future). Today we have a link to Chris' doctor, Dr. Harry Atkins. He is the hematologist and member of the bone marrow transplant team. Since we are at a learning hospital, we have actually only seen him a few times. We are often with other doctors, pharmacisits, nurse coordinators, research fellows, and sometimes people we aren't even sure work for the hospital.

It can sometimes be confusing because you can ask the same question to all of them and get a different answer from each person. And we often find ourselves recounting Chris' medical history over and over, and sometimes it takes a lot of strength to not tell them to just read Chris' chart because all of the information is in there. But we really do like all of he doctors that are at the hospital, especially Dr. Atkins.

The first time we met Dr. Atkins it was to determine if Chris was a candidate, and we spent over two hours with him. He went over every detail of Chris' condition and even marked down our wedding date in his file. When Chris had the bone pain last weekend, it was Dr. Atkins that was on-call and he was very concerned when we called him that night and made sure Chris was seen right away. He even called us the next morning when he went into the hospital to make sure Chris was doing better and that the emergency doctor had prescribed Chris enough pain medication. The most telltale sign is everytime we mention his name to anyone on staff at the hospital they all comment about how great he is and how much he cares about his patients.

So after my long love letter about Chris' doctor, here is a link to him being interviewed about this procedure.
http://www.insidermedicine.com/archives/Insidermedicine_in_the_Spotlight_-_Dr_Harry_Atkins_1436.aspx

Friday, October 29, 2010

Day 16 - The Start of Another Weekend (Oh no!)

It is now after hospital hours on a Friday, so of course Chris has just informed me that he is having a strange reaction. Chris appears to only have strange reactions after our main contact on the bone marrow transplant team goes home for the weekend. Now these strange reactions usually end up with us spending the night in the hospital, but I have high hopes we may be able to deal with this one.

Chris has broken out in a rash on both of his arms around where his IV was inserted. It was barely noticeable yesterday, but today it has become more red and travelled down his arm. Chris literally told me this at 6:00 pm. Sometimes I really want to hurt this guy.

So after a quick call to Nurse Laurie (my mom) she guessed it was just an allergic reaction (possibly to the antiseptic used to clean his arm) and let us know what to look out for. We also read that Cyclophosphamide can sometimes cause skin irritations, but we think it might be a little too delayed for it to be that. So we will be making a trip to Shoppers Drug Mart tonight, but it will be for Benadryl and not narcotics. This is a welcome improvement from last weekend.

Other than this latest development, Chris has been doing great. We both have been spending a lot of time reading other patients' blogs and actually watching a few videos on YouTube. In the United States we found a similar procedure being conducted in a clinical trial, called Halt MS. From what I can tell,  the main difference is the chemotheraphy they use to knock out the immune system. In this trial they use  a chemotherapy regimen called BEAM, which consists of four different drugs (carmustine, etoposide, cytarabine, and melphalan). A couple of the patients that went through this kept blogs or posted videos at the end of their treatment. Now both of these patients were a lot worse off than Chris, but there stories and improvement are pretty incredible!

This is a blog from one of the patients that did Halt MS. It is very similar to what Chris and I are doing. The patient, Jamie is now one year out from the procedure.
http://mymsjournal.blogspot.com/2010/09/its-been-1-year-today.html

This YouTube video is from the founder of a website called ActiveMsers (http://www.activemsers.org/). The video is pretty funny and really honest, and I definetly recommend watching it when you have a minute (or 15) free.
http://www.youtube.com/watch?v=6VTu--htcMI

Finally, we recieved another package in the mail today. We could get used to this :) Chris recieved a book that was autographed by the author (Jess Walter) and a message that said he was rooting for him. Honestly, all the support that we have been getting is great (and greatly appreciated). Speaking of which, we had two hits on our blog from the Phillipines today and now have over 1300 hits.

Thursday, October 28, 2010

Day 15

We are starting to get in preparation mode for Chris' second phase. Today, I went and got my first flu shot. I had been waiting until after Chris' stem cell collection as you are not allowed to go into that section of the hospital if you are showing ANY signs of a cold or flu. Since I was told that some of the side effects of the flu shots can be similar to flu-like symptoms (aches, fever, etc.) I was waiting to get through this first part. Now I can feel a lot more assured that I won't bring the flu home to Chris.

I also went out and bought a new winter jacket and a hat to cover Chris' soon-to-be bald head. We are really hoping for a milder winter (especially since snow shovelling duties will be on my shoulders this year), but thought we would go and buy warm things while we now have the time. Unrelated to this whole procedure, we also spent the day carving our new member of the family, Henry, the Jack-O'-Latern.

We also came across information about another patient, Alex Normandin, who went through this whole procedure in December 2008. He was a medical student at McGill University and when he had the treatment he was at a similar stage in his MS progression as Chris. At the time he was still able to work, but doctors were telling him that he was no longer responding to his medication and would likely end up in a wheelchair.

Here is an article about Alex: http://www.canada.com/health/Stem+cell+transplant+reason+optimism+patient/1541919/story.html
Also, here is a YouTube video of Alex explaining the procedure. He is only 5 month post-transplant, so it is interesting just to see him.
http://www.youtube.com/watch?v=sQMmyD8fbqc

Finally, we just wanted to send a big thank you for the care package that was delivered at our house today. It was so delicious.  (merci beaucoup!)

Wednesday, October 27, 2010

Day 14


We are getting spoiled. First, we returned yesterday from our walk to have a care package filled with brownies, gingerbread (with the most delicious pumpkin spiced buttercream!) and cookies sitting on our doorstep. Today, our door bell was rang (repeatedly!) and by the time I got to the door there was no person or car in sight. However, there was a card and gift filled with Halloween treats (decorations, costumes, candy and more). Later on today we also had a bouquet of fruit, including chocolate covered apples and strawberries delivered to our door.

Treats and surprises are the best way to keep us going. Thanks everyone :)

Since the weather was still so nice again today, and we were in the Halloween spirit after our delivery, we drove out to Manotick today and picked a pumpkin. We figured that it would be empty at 2:00 on a Wednesday and we were right! There was maybe one other car there and we had tons of pumpkins to pick from. It took us a little longer than we thought, because Chris didn't understand that I needed a pumpkin to speak to me. Finally, we found our pumpkin and we will be carving him tomorrow. Any suggestions or requests for what kind of jack-o'-latern we should make?  We also bought some sparkling apple cider for our New Year's Eve party. Since Chris won't be able to drink alcohol, we thought we would buy something to celebrate the new year with, and hopefully at that point we will have a lot to celebrate.
Chris is still feeling pretty sleepy and gets tired when we go on walks, but other than that he is still doing really well.  We almost want the second phase to start right now, so we can just get it over with!

Oh and we now have over 1000 hits! That's incredible. Thank you so much for following us :)

Tuesday, October 26, 2010

Lucky Day 13


We have decided that we find the number 13 lucky. On Chris' 13th day of treatment, we got the call that his stem collection went really, really well and he didn't need to go in today! We posted some more pictures from yesterday's collection . Chris fell asleep for awhile, so I got bored and took a bunch of pictures of the machine. Sorry for those of you who don't like looking at blood!

It turns out all of that pain was actually a really good thing. Although, I am not sure Chris is ready to admit it. But it does mean we are finished the first half of this treatment. Now, Chris just needs to get into shape for the second part, which we are looking at doing at the end of November (pending on scheduling issues). 

In the meantime we are dealing with all the other fun things associated with taking a medical leave. The main one: short term disability forms. We had the pleasure of recieving a nice letter from SunLife Financial yesterday night telling us that Chris had missed the 30 day deadline and would be denied coverage. Seeing as it had been less than two weeks since Chris went on disability, we were more than a little confused.

It turns out that Chris' work indicated on their forms that Chris' last day of work was September 17. This was true, but that was because Chris was off getting married and away on his honeymoon. The insurance company took it to mean that Chris was off on disability at this time.

We have now spent all day talking to countless customer service representatives trying to explain to them that Chris was just not at work, he wasn't on disability. At one point I heard Chris yell into the phone, "I was on vacation in Greece and I am pretty sure I wasn't disabled at that time!". We got transferred after that.

So even after all of those calls, we are still waiting for the Abilities Case Manager to call us back. In the meantime, Chris' work has faxed over a letter explaining that they were paying Chris while he was on vacation, and that his last day of work was not the same as his last day before his procedure.

To cool Chris off a little, we went out for a walk today. Chris' doctors have indicated that it is really good for Chris to get exercise in this period, so he can be nice and strong for the second part. Since the weather seems to be be cooperating with us (it was 19 here in Ottawa today!) we went for a walk along the Ottawa River. We can't go very far, because Chris gets tired fairly quickly. It was REALLY nice to get out of the house though.

Oh and on a completely unrelated topic, we just wanted to say a very BIG thank you to everyone reading our blog. When we came back from what was a fairly frustrating day, we checked to see our blog statistics (we can see how many people read our blog each day and from what country they are from). We already had 145 visits today, and even a few from Cuba! It is really a great feeling to have so many people following  this blog.


Monday, October 25, 2010

Day 12 - Stem Cell Collection

What we learned today is that no matter how well you plan for something, you may get a call at 9:30 in the morning that will throw your plans away.

Since the person that was scheduled to get their stem cell collection today did not have a high enough stem cell count they called Chris this morning to see if he could come in and be tested to see if he was ready.

They figured that since Chris was in so much pain over the weekend that it was a good sign that his body was producing a lot of stem cells.

So about an hour later Chris and I were sitting in the hospital while they took his blood for the 50th time in the last two weeks (a bit of an exaggeration). The blood then gets sent to Canadian Blood Services to analyze all of his counts. Two hours later, we got the good news. Not only was Chris ready for the stem cell collection, but his stem cell count was so high (hence the extreme pain over the weekend) that they only needed half the blood, and it would only take 3.5 hours instead of 7 or 8.

The stem cell collection went really well. We had two nurses from Canadian Blood Services that spoiled Chris. He wanted juice, they asked him what kind. His neck was stiff, and they rushed to give him pillows. We were really lucky to have them. They were even willing to work in the dark for awhile, so that Chris could turn off the lights and sleep for a little.

For the stem cell collection to work, Chris is hooked up up to both of his arms, and one of them needs to stay completely still. The blood goes out of his arm into the machine, which you can see in our photos. The machine then seperates the stem cells and keeps them in the bag above (they kind of look like cream of tomato soup). The rest of the blood then goes back into Chris' other arm. All of Chris' blood actually goes though the machine twice, so it was actually pretty neat to watch.

Other than being a little stiff, Chris did really well. His only mishap was when he accidently wet the bed...by squeezing and breaking one of the gloves they had filled with warm water to increase circulation to the insertion sites.

Now we are waitng to find out if Chris will need to go in and do it again tomorrow. Even though Chris had a great stem cell count, when it is processed at the lab they can lose anywhere from 30 to 60 per cent.

We are expecting a call within the next hour, but cross your fingers for us that we don't have to. Stem cell collection normally begins at 7:30 am, so that would be an early morning to get there in time.

Sunday, October 24, 2010

Day 11

After all of the excitement of the weekend, we have been trying to be as uneventful as possible. Good for Chris' health, bad for writing a blog.

Chris is still on the painkillers, and every so often believes he is tough enough that he doesn't need to take them anymore and about 15 minutes later changes his mind.

The drugs aren't making him feel the greatest, and he doesn't have much of an appetite. But he did insist on going to the grocery store( i.e. sent me out to the grocery store) so that he could have some chocolate chip cookies in his ice cream. I am not that concerned about his lack of appetite anymore.

We are starting to get excited for the end of the week when Chris will be off of his medication, will have finished his stem cell collection, and will be getting better by the day (instead of getting worse).

For your viewing pleasure we have a link to a W5 piece on the bone marrow stem cell transplant.
http://www.ctv.ca/CTVNews/WFive/20090213/w-five_ms_090213/
Just a few thing to keep in mind when you watch it:
1) Since the death of the MS patient in the clinical trial, there have been changes made to the procedure to make it more safe.
2) The best results have been seen in relapse remitting patients, such as Jennifer Molson (featured in the piece) and Chris
3) The stem cell treatment in China is nothing like the one that Chris is doing
4) W5 is a just a little dramatic sometimes.

Saturday, October 23, 2010

Day 10 (and the end of Day 9)

Oh what a night!

So after we spent yesterday telling you how great Chris was doing, we spent another night in the hospital last night. What is it about us and midnight on weekends? But, before we get into the story, I just want to assure you all that Chris is doing much better today and is sitting beside me while I write this.

In our last post, we mentioned that Chris was starting to get some bone pain ( in his lower back, neck, and hips). Well at about 7:00pm it started getting worse, so he took codeine. About two hours later it was getting much worse, so he took a second pill. By 10:30, he was in so much pain that he tried to fall asleep, but by 11:00 he still was unable to sleep, and took another two pills. Still nothing and it was just getting worse and worse, to the point that he was spasming and his legs were buckling out. He described the pain as someone hitting his taibone with a sledge hammer and feeling it all the way into neck. During this time, he also developed a cough and a borderline fever. So after I made a quick  emergency call to his hematologist, we were heading down highway 417 at midnight on our way to the emergency room.

Chris' doctor called ahead to the emergency room and when we arrived there they had him in a bed in the Observation room within 5 minutes. They gave him a needle and an IV drip of a drug called hydromorphone, a drug similar to morphine, but it is about 4 times stronger. The drug kicked in within 15 minutes and his pain level was down from a 10 to about a 6 within a half hour. They also tested his blood, monitored his vitals and did a chest x-ray to ensure he did not have a blood or lung infection. His fever was borderline, but since his white blood cell count was still relatively high, they gave us a perscription for the oral hydromorphone.

One thing they mentioned was that this drug can cause nausea. We discovered that this was in fact true when Chris was leaving the hospital and at the Shoppers Drug Mart at about 3:30 in the morning.

Please try and picture this:  It is 3:30 in the morning and we are at a Shoppers Drug Mart trying to get a fairly large prescription of narcotics and Chris is having what looks like withdrawl symptoms in the waiting area. It made for an interesting night.

It was 4:30 before we went to bed that night (or morning?) and we had to get up at 8:30 to give Chris his next injection of neupogen and more pain killers. We ended up sleeping until 12:45. Chris is still taking the maximum dosage for pain, but he is doing MUCH better (although his head is a little foggy).

So this is now the second time we have been to the hospital at midnight on a weekend. I can only hope we aren't there next weekend. The emergency room at midnight on a weekend already has enough strange characters in it, and I can only predict that it is ten times worse when you bring Halloween into the equation!

Friday, October 22, 2010

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.

Thursday, October 21, 2010

Day 8 - How did we get here?

I am starting to get concerned that this blog is turning more into updates about Chris' hair than his transplant. Chris decided to change his hair for the third time today and had me buzz it all off. And yes, we have included yet another photo of Chris' hair. We promise to try and take more interesting photos in the future.

Since today is just another rest day, we thought we would take this opportunity to go back a little bit and explain why Chris made the decision to do this procedure. We have recieved a lot of support from friends and family, but one of the common questions is, "Isn't there anything else you could have tried instead?"

In short, not really.

Chris was first diagnosed with  relapse remitting multiple sclerosis in February 2007. There are four kinds of MS: relapse-remitting, primary-progressive, secondary-progressive and progressive-relapsing. Relapse-remitting means that you have a series of relapses when symptoms get worse and remission when symptoms improve. At the time of diagnosis, most people have relapse-remitting. However, more than half will eventually develop secondary-progressive. Secondary progressive is when you have relapses, but you stop having periods of remission and experience a slow but steady worsening of symptoms.

As early as January 2005, Chris had gone to the doctor on multiple occassions due to weakness and numbness in his arm and legs. Finally he was evaluated by a neurologist in December 2006 when the entire left side of his body went numb, including his face that appeared to be drooping on the one side. She sent him to get an MRI and it came back with multiple lesions on his brain, the main indicator for multiple sclerosis. Chris started taking a drug called Rebif that required injections 3 times a week. The drug is not a cure, but it reduces the number of relapses and  slows down the progression of the disease. When Chris had a relapses they would prescibe him high-dose steroids. The combinations of the Rebif and steroids seemed to be very effective at first.

 From April 2007 to September 2009, Chris had approximately 3 relapses affecting primarily his left side of his body in his leg, arm and face. We also noticed a slight decline in his balance and memory. However, in September 2009, while Chris was working for three weeks in Nunavut, he had a relapse that affected his vision and balance. In February 2010, he had a major relapse that affected his leg and made it difficult for him to walk even short distances. When he took steroids, it took over 2 weeks for him to walk normally again. Prior to this, Chris would notice a major improvement within 48 hours. A month later, Chris had another relapse that affected his left leg. It was so bad at some points that he needed help getting from the car to the front door. This time it took almost a month before Chris started to feel any big improvements.

We also noticed over the winter that Chris was never getting back to 100 per cent. Even after a relapse, Chris could no longer run or skate and his memory and balance were continuing to get worse. When we met with his neurologist, she confirmed what we feared. Chris was nolonger responding to his medication and he had started to develop Secondary-Progressive MS. We were told that unless we took action, Chris may lose his ability to walk without an aid.

We had two options:
- A new drug called Tysabri. It had shown to be really effective at reducing relapses in MS patients, but you risked contracting a brain infection called PML (for which there is no cure and results in death). The risk for this infection increases the longer you are on it, so Chris would only be able to take if for 2 years.
- The Stem cell transplant, which also had a risk of death and serious complications.

It wasn't exactly an easy decision. We were referred by Chris' current doctor, to a hematologist, who explained the entire procedure for us. We did a TON of research. We searched the Internet and journal articles for everything there was written. We even read patients' blogs (one of the main reason why we are writing this blog) to understand why they decided to pick a certain treatment. I even went so far as to make a chart with the pros and cons of all the options we could find. In the end, the stem cell transplant, despite it being the most dangerous, was the only option that gave us an end. If this could really stop the progression as it had in other patients, then it would mean an end to medicatons, an end to the relapses and an end to the worrying.

Since the stem cell transplant is still an experimental treatment, Chris still needed to be accepted. Luckily in June after we met with another neurologist that specialized in treating MS patients, he determined that Chris was an ideal candidate.

So this brings us to now. We are meeting with a bunch of Chris' doctors again tomorrow to see how he is progressing. And of course, we will let you all know.

Wednesday, October 20, 2010

Day 7

It has now been a week since we started this whole process, but it really seems like it has been a lot longer (time doesn't fly when you aren't allowed to do much).
We don't have too many updates today:
- Chris is finally off his anti-nausea medication so his hiccups are finally gone (some people have said that hiccups at least weren't too bad of a side effect, but you should have seen how crazy Chris was after a two hour hiccups attack)
- Chris is starting to get joint pain in his knees and hips from the neupogen

Since we don't have a lot to update you on, we thought we would post a link to an article on one of the patients that had this procedure done as part of the clinical trial.

Her name is Jennifer Molson and Chris and I have had the opportunity to meet and talk to her multiple times to find out what this process is really like. Her results were incredible. At the time when she participated in the trial, patients needed to be much further along in their MS to be considered for the trial. When she started, she was unable to walk, but today she can run, dance and has even been downhill skiing. You can read about it more here:
http://stemcellfoundation.ca/blog/2010/05/06/i-still-have-ms-but-i-dont/

Tuesday, October 19, 2010

Day 6 - Waiting

Chris is still doing really well and other than taking his injections and medications, we are leading a very uneventful life (not that I am complaining!)

We thought that we would take this opportunity to explain this procedure to everyone (since many of you only know the bits and pieces we have explained).

For those of you who don't really know what stem cells are (I didn't really know until we started this), they are made in the bone marrow are known as "mother" cells as they are capable of making another cell identical to themselves and to make other cells, which eventually become red cells, white cells, or platelets.

Chris is having an autologous stem cell transplantation. This means that doctors are planning to collect Chris' own stem cells, fix them, wipe out Chris' immune system and then transplant them back to Chris so that he can grow a new immune system that will no longer attack his neurological system. For this to work, Chris will need to undergo high dose chemotheraphy to ensure that he absolutely no immune system left.

Here is a rundown of how it will work:

There are two phases to this procedure: the collection phase and the transplant phase. We are currently in the collection phase, which consists of one dose of cyclophosphamide (chemo) and G-CSF (neupogen) to lower his white blood cell count and boost his stem cell count. This will cause him to make so many stem cells that they will actually overflow from his bone marrow and into his blood stream. After doing this for 10 days, Chris will have a stem cell collection. During the collection, a needle will be inserted in each of Chris' arms and blood is withdrawn from one arm and circulated through a cell seperation machine to extract the stem cells. The remaining parts of the blood are returned back to Chris through the needle in the other arm. The process can take up to 2 days, with 6 to 8 hours of collection each day. However, the doctors have indicated that we may be able to just do one day of collection.

Next Chris will rest for 2-3 week, so that he can be ready for the second phase. During this time, doctors will treat Chris' stem cells, so that they no longer have the specific cell (the T-cell) that triggers the attack on the immune system. He will regrow new ones that will (if everything works) function normally.
Prior to the second phase, Chris will also have a surgery to have a central venous catheter (known as the Hickman catheter) inserted into a large vein in his chest. This will be used to give blood and drugs throughout the next phase and during his recovery.

The second phase, which will likely start sometime between the middle of Novemeber to the beginning of December. To get rid of his current immune system that is causing MS, Chris will recieve three drugs through the Hickman catheter or IV: Busulphan (chemo) in high doses, more cyclophosphamide (chemo) in high doses and antitthymocyte globulin (an immune suppressant). Following this, Chris will recieve his improved stem cells. It will then take Chris about 6 months to regrow the majority of his immune system. During this time, his ability to fight infections will be extremely low.

So there it is in a nutshell. Hopefully, this clears up questions about how the procedure works. In the clinical trial that finished last February, this procedure was successful in stopping the progression of MS in all patients, and some patients even saw an improvement in their symptoms. The trial started back in 2002, and we have had the opportunity to meet one of the patients who went through the procedure and has seen great results. She went from not being able to walk without assistance to downhill skiing!

Monday, October 18, 2010

Day 5 - Start Neupogen

Today Chris started taking the neupogen injections to boost his stem cells before his stem cell collection next Wednesday. We will do this daily until then. The main side effects for this is bone pain, primarily in the long bones and the joints. This is caused by the stem cells overflowing from the bone marrow into the body. Luckily, this has yet to happen.

In term of  other side effects from the chemo and other drugs, Chris has been doing relatively well. He has some mild nausea, heartburn and a few headaches. However, what seems to be bugging him the most are the chronic hiccups he seems to have. At least 30 times today Chris has had to fight hiccup attacks that DO NOT want to go away. We have been brainstorming different remedies: holding your breath, controlling your breathing, plugging your ears (don't laugh, apparently it is reccomended by doctors!) and Chris even tried lying his head down on kitchen counter in the dark (the surprising cure).


We have also been fighting boredom a little bit (thank goodness it is hockey season!) However, Chris decided that a fun thing we could do today would be to work on his mohawk. He decided he wanted it shorter. The pictures we are posting are the result. Let's just hope this boredom doesn't last long because I can only imagine what else he is planning on doing to his head.

Sunday, October 17, 2010

Day 4 (And the end of Day 3)

First, here are some photos of Chris getting chemo in his private room yesterday.

Second,  it turns out that Chris and I jinxed ourselves with our last blog post. Remember how we said that Chris was doing great? Well he is doing well again, but we hit our first low last night.

As we mentioned before, as part of Chris' first chemo treatment, he needed to drink and go to the bathroom every hour last night to ensure that the chemo did not damage his bladder and got out of his system. This worked well while we were at the hospital and Chris was getting hydration through an IV, but for some reason after 7:00 last night it didn't matter how much Chris drank, he could not go to the bathroom. Five hours later, a nauseous, bloated, and hurting Chris was admitted to the hospital. They gave him hydration through his IV again and ran a bunch of tests to make sure his kidneys were working.

The good news? His kidneys are fine and after a long night and getting sick a few times, Chris was back to normal again by noon and out of the hospital by 2:30.

The not-as-good news? They aren't sure why he reacted that way to the chemo. We also got about 2 hours of sleep last night, which has made for a quiet day today.

We start giving Chris his injections to boost his stem cells tomorrow.


Saturday, October 16, 2010

Day 3 - Chemo

Today Chris had his first dose of Cyclophosphamide. We were at the hospital from 10:30 to 3:30 and the whole process was pretty surreal. Luckily we recieved the VIP treatment, and they gave us our own room with a TV and a private washroom. We also were able to hook up our laptop and watch videos. We took a couple photos of his room (you get bored sitting around for 5 hours), so we will post them soon.

We also learned how to give Chris his injections, which I was a pro at (after practicing a lot on a padded j-cloth). 

Since this chemo drug is so tough on the bladder (and could cause damage to it), Chris has to drink and go the bathroom every hour for the next 24 hours (including throughout the night). After staying up essentially for 24 hours, we are due back at the hospital tomorrow at 10:30, so hopefully they give us a bed again so Chris can nap.

Chris is doing really well so far. His only real symptoms is cloudiness in his head. He still can taste everything, has an appetite and no nausea. They gave him two pills for nausea while he was there and a pill for his kidneys, so it looks like they are working :)

Also, we start his drug regimen tonight (one hydration pill and two nausea pills), so hopefully he still feels this way tomorrow.

Friday, October 15, 2010

Day 2

We spent the day cleaning today.

The doctors told us that by next weekend Chris will have no immune system, so we need to make sure that our house is cleaned top to bottom.

We also got Chris' appointment time for his chemo. Chris begins at 10:30 am tomorrow.

And due to many requests, here is a photo of Chris' mohawk. Enjoy!



Thursday, October 14, 2010

Day 1 - Collection Planning Meeting

So today is officially Day 1. We went to Ottawa General and met with the nurse coordinator, the pharmacisit and one of the doctors on the bone marrow transplant team.
We also recieved our first schedule for the collection regimen and a fancy chart with all of the drugs Chris will need to take.
The schedule goes like this:
October 16 - 4 hours of Cyclophosphamide (chemo to lower white blood cell count)
Octber 17 - 4 hours of hydration and electrolytes and we learn how to give Chris injections of Neupogen
October 18 - 26 - Daily Neupogen injections ( to boost stem cells)
October 22 - Physical and blood work to check for infections
October 26 - Blood work to check stem cell counts
October 27 - Stem cell collection (6 -8 hours)
October 28 - Additional stem cell collection ( if needed).
Then we wait for a 2 -3 weeks to find out when Chris will do his high-dose chemo followed by the stem cell  transplant.

The drug chart that we recieved detailed all the drugs and when to take them. We noticed that it seemed that each drug had a side effect that needed to be treated by another drug that may also have side effects that could require treatment. Chris will be taking two drugs for nausea, and if they don't work they have a third nausea drug to take as well. The only catch is that this third drug may cause Chris' eyes to roll back in his head and his joints to lock up. So if we take this drug, they have also prescribed another drug to go alongside it to prevent this. There is also a drug for pain (no Tylenol or Advil allowed), a drug for his kidneys, a drug for hydration, and this is on top of the daily injections he will need to take. Thank goodness for schedules.

In other news Chris decided that he would get a mohawk today. You see Chris has always wanted a mohawk, but always knew that he would never be taken seriously at work as an engineer. Now that he knew he was losing his hair, he decided that this was his opportunity. But in one of those "life's like that" moments, we also learned today that Chris will not lose his hair for another 2-3 weeks. So Chris now has a mohawk for much longer than he originally bargained for, but he did get his wish and I can't take him seriously.

We are off to clean the house to make sure it is germ free in advance of his chemo.