Day -11

Where do we begin?

Well, first I will start with the title of this blog post. We received Chris' schedule today and that is what they refer to today as. Since Chris will be receiving his stem cells on December 13, they refer to it as Day 0. Everything that happens before that is just a countdown to that date, so today is T minus 11 days until the transplant. Make sense?

So here is what Chris' schedule looks likes, and it is more or less what we expected.

December 2 - Planning appointment, and PICC insertion.

Yes, Chris was surprised this morning when we got a call saying that he was getting his peripherally inserted central catheter (PICC) line in today. This is the cathether that they insert in his arm and feed up through his vein into his shoulder and down near his heart. Chris was not looking forward to this at all, but they froze the area, it only took an hour and he didn't feel anything! The benefit of the PICC is that it limits the amount of times Chris needs to get needles. The downside is that he can't get it wet, so he will need to shower with a bag around his arm.

Chris also starts his anti-seizure medication tonight as the chemotheraphy that he begins tomorrow may cause seizures. I am very happy about this, because I have had a fear of seizures every since I was trained as a lifeguard at 16. Of all the things to worry about, I know it shouldn't be that high on my priority list, but seizures just look really scary.

December 3 - Chris is admitted to the hospital (this is so he doesn't need to go through emergency and he can choose to stay at the hospital if he doesn't feel up to going home). He also meets with the pharmacist where we learn all about the drug regimen he will be on. And of course, Chris will start his first chemo drug, Busulphan, for four hours. He also takes medications to prevent gout and damage to his liver.

December 4 - Chris has 2 hours of Busulphan

December 5 - Chris has 2 hours of Busulphan

December 6 - Chris has 2 hours of Busulphan

December 7 - Chris gets a rest day from chemo and stops taking his anti-seizure medication. We have to start monitoring Chris fluid intake and output to make sure that chemo is quickly getting out of his system, because the next day we start Chris' favourite drug, Cyclophosphamide (sorry, for the sarcasm).

December 8- Chris start Cyclophosphamide for the next four days. This was the chemo that Chris took in November that requires you to drink every hour and go to the washroom every hour. This was the chemo that required us to go to the hospital at midnight, because Chris decided to retain all of the liquid (yes, I am blaming him for this!) Since getting up every hour for four days straight is extremely exhausting, we will have the option to admit Chris and have him hooked up to hydration and catheterized. He is still deciding on that one.

December 9 - Chris will have Cyclophosphamide and an infusion of Antithymocyte Globulin (ATG). While the chemo drugs will wipe out his white blood cells, this medication will wipe out his T cells (the cells that are behind multiple sclerosis). Since ATG is derived from the serum of rabits and horses (weird, I know) the body reacts against it and you have an allergic reaction. Due to this, they will be giving Chris a bunch of allergy medications to prevent this. The ATG is also given slowly over a long period of time to limit the reaction.

December 10 - Chris will have Cylclophosphamide and ATG.

December 11 - Chris will have Cylclophosphamide and ATG

December 12 - Chris will have ATG and hydration.

December 13 - Chris will get his purified stem cells back! Apparently they are kept in dry ice and it looks really cool when then bring them out to defrost them. I promise to get photos of that!

They told us that following all of this, that the hard part will then begin. Approximately 10 to 14 days after this Chris will hit zero white blood cells and have no immune system. It will then take another two weeks until he starts to stabilize. During this time he will get antibiotics to treat infections, Intravenous immunoglobulin (IVIG), which I am pretty sure is a blood transfusion, and our good friend Neupogen to boost his stem cell production. Neupogen was the other drug that hospitalized Chris last time due to the extreme pain he was in. Although we have been assured that it will not be painful this time.

Chris will continue to have the IVIG once a month for a year and will need to keep his PICC line in for about 6 weeks.

So we promised you a nice long post, and I think we delivered. We also threw in the last picture for fun! We figured this blog entry was far too serious.

Oh and a quick thank you for the Christmas trees, decorations and treats we received. We are decorating our house tonight and we will show it off in future posts!

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.

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!

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.

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/