Friday, December 31, 2010

Day +18 (post- transplant)

Chris' fatigue shows no sign of letting up. He slept for 11 hours last night. He had a one hour nap after being awake for half hour. When we got home from the hospital he had a nap until dinner. He then had a nap after dinner, woke up and watched an hour of TV  and has now gone to bed again. He has asked me to wake him to ring in the New Year, but I am not sure if he will be able to make it.

But even though our NYE was not what we had planned, we keep assuring ourselves that this procedure means that this next year will continue to get better and better. It is pretty obvious what our joint New Year's Resolution is this year. We want to take advantage of this second chance. Chris gets a second immune system. We now get a chance to do all of the things that we might not have had the opportunity to do. 2011 is going to be a pretty exciting year.

His counts were down a bit today:

WBC: 2.3

Platelets: 16

Hemoglobin: 107

Neutrophils (from yesterday): 1.19

Tonight's blog will be short since I don't have Chris here to help me. But tomorrow since we have our first rest day in weeks we thought we would do our own year in review. We will give you our take on this procedure now that we have a little bit of distance from the whole thing.

Thursday, December 30, 2010

Day +17 (post-transplant)


Chris is pretty proud that he still didn't lose all of his hair. You can
still see it faintly in this photo.

Today's trip to the hosptial was a little eventful. While Chris has had really no nausea during or after the transplant, he seems to have developed this new symptom later on. He got sick on Monday and Wednesday after breakfast, but he thought this was triggered by brushing his teeth too vigourously. However, today Chris got violently sick on the way to the hospital. We had  to pull over on the side of the road and put on a little bit of a show for people waiting for the bus. When we arrived at the hospital they gave him an IV anti-nausea. He was still sick a second time after he had drank some orange juice to take his pills. They tried a second anti-nausea and it seemed to do the trick.

Now it is very common for transplant and chemo patients to have nausea during or shortly after chemo, but it is a little strange to get nausea for the first time nearly three weeks from his last dose of chemo. But Chris likes to do things differently. He is starting to take an anti-nausea pill a half hour before any of his meals and we now travel with a plastic bag.

We also received some good news today. Chris will go in for antibiotics again tomorrow. He will then get a day off on New Year's Day and then will go back for one more day. If he seems to be doing well, he will be transfered to the clinic where he will start visiting twice a week, then once a week and finally only once a month. Since Chris can't stand going to the hospital now, he was extremely happy to find out that we would get to be going to the hospital less.

His counts today did not show much change:

WBC: 2.9

Platelets: 19

Hemoglobin: 116

They did not have his neutrophil count in yet, but I get the feeling that now that he is above 0.5, they don't seem to be that concerned about this count anymore.

One of his doctors examined him and it looks like his abscess is healing well. They are still not sure if Chris will need to have surgery down the road, but they are hoping now that Chris' white blood cells are kicking in that he will be able to fix himself. He is still in a lot of pain and is on a lot of pain killers. It is definitely more manageable now though and they seemed to have found a good balance for Chris.

We are now getting ready for New Year's Eve tomorrow night. We received some gifts from friends full of party hats, champagne and decorations. Chris has not been allowed to drink any alcohol yet, but we are going to ask his doctors for special permission tomorrow. We have had a pretty interesting year and it would be nice to toast to a new year that didn't include MS.


Wednesday, December 29, 2010

Day +16 (post-transplant)

When we visited the hospital today it was the first time we had seen some of Chris' doctors since they left to go on Christmas break. Everyone was commenting on how much of a difference that time had made.

Chris is still really tired. He has several two hour naps a day. And when he is awake he still feels tired. He also has a really hard time concentrating on things. It makes sense though since growing a new immune system takes a lot of energy.

One of the things that we were trying to concentrate on today was insurance. Now we have been extremely fortunate compared to other people. We have read about people spending thousands of dollars to get this procedure done. Luckily for Chris, this procedure is free and all the drugs are covered. Our only expenses came from parking fees and cafeteria visits for me. Chris was even covered for short term and long term disability, so we didn't need to worry about losing his income.

However, while Chris was in the hospital we received a letter saying that as of December 26, he would no longer be finished his disability leave. There was no explanation as to why it was happening. Of course we didn't read this letter until we got home from the hospital on December 26, and then the next two days were holidays. We called today and Chris' case worker was not in the office and no one at the call centre knew why all of sudden we had to resubmit a ton of forms to apply for disability coverage again. Chris' doctors have already started filling out the forms and are explaining that Chris could be out for another 6 months, but it means that until the forms are submitted and evaluated we are back to hating insurance companies.

Other than being tired and hating insurance companies, Chris is still doing well.

His counts for today are:

WBC: 3

Platelets: 26

Hemoglobin: 116

Neutrophils: 2.6

Tuesday, December 28, 2010

Day +15 (post-transplant)

Today we arrived at the hospital ay 8:00 am and left the hospital at 9:30 am. It seemed to be first day that Chris had no issues. He came in, had antibiotics and since he was doing so well, he didn't even need to see a doctor.

His counts were down again today, but they reassured us that they are still in a "safe range."

WBC: 2.7

Platelets: 38

Hemoglobin: 96

Neutrophils : 2.2 (from yesterday)

Other than his pain and fatigue, Chris is feeling pretty good. He is already asking when we can stop going to the hospital every day. He is definitely sick of the hospital. He won't even watch any TV shows about hospitals anymore.

However, since we had the rest of the day away from the hospital, Chris got to have his first visitor today! He tried his hardest to stay awake the whole time, but he is still having a hard time staying awake for long periods. We were a little nervous about him having people visit him at the house, especially with his counts going down these last few days. But having someone come by made both of us feel a lot better and as long as we are careful, it is really worth taking a little bit of a risk.

Monday, December 27, 2010

Day +14 (post-transplant)

One of the only pictures I took while we were in the hospital. Chris'
arms and stomach were covered in these bruises just from small
needles (but don't worry, they didn't hurt) and he broke out in
extremely uncomfortable rashes under his arms and other ones on
his back, stomach and legs.
Today was Chris' first day as an outpatient again and we were definitely nervous showing up for this appointment this morning. We were just waiting for them to tell us that Chris would need to be admitted again.

And when we got there it almost happened.

While Chris was doing well, a doctor from the infectious disease team had recommended Chris be on antibiotic that requires an intravenous injection every six hours. To administer this drug, Chris would need to stay in the hospital.

Luckily for Chris, after one of his own doctors spoke to him, he decided that Chris will try taking a different combination of antibiotics that only require one intravenous injection per day. As long as Chris responds well to this treatment, he can remain an outpatient. We both sighed with relief when we heard this.

In addition to receiving antibiotics, Chris had his blood and urine tested this morning.

His counts were:

WBC: 3.7

The other random photo I took of Chris getting his first
blood transfusion.
It is normal in the first few weeks to have your counts move around a lot, and then will start to stabilize. We were also expecting his counts to go down a bit since he is nolonger getting neupogen that boosts stem cell growth.

Platelets: 48

Hemoglobin: 112 (it was 106 yesterday)

By the time we left today, they did not have his neutrophil count, so we will probably always be a day behind with this information.


We are due back at the hospital really early tomorrow morning and Chris REALLY needs his sleep! Thank you to everyone for congrats for being home. It really does feel great.

Sunday, December 26, 2010

Day +13 (post-transplant)

We received a late Christmas gift today, but it was worth the wait. Chris got to leave the hospital today and will become an outpatient again as of tomorrow.

This morning we received Chris' counts:

WBC: 4.3

Platelets: 30

Hemoglobin: over 100 (can't remember exactly)

Neutrophils: We left before they gave them to us.

Since his counts were doing so well and he was able to go 24 hours on oral pain medications, they let Chris go home today at about 1:30 pm. He now is taking hydromorphone every 4 hours, but his arms are relieved to not have as many injections. I took some photos of the bruises on Chris' arms (they are pretty impressive) and we will try and post them later on. However, Chris still needs to take anti-anxiety medication because of the bad side effects he gets from taking so many pain killers.

In addition to hydromorphone, Chris is still taking Ursodial to protect his liver, an antiviral, Pantoloc to prevent and treat any stomach ulcers and reflux and two different antibiotics.

We are due back at the hospital at 8:30 am, but it means tonight we get to sleep in our own bed.

Saturday, December 25, 2010

Day +12 (post-transplant)

Merry Christmas Everyone!

Tonight's post will be short.

Despite having low platelets (less than 10) and low hemoglobin (76), Chris' counts are looking great.

His white blood cell count was 1.7 and his neutrophil count was 1.5. And since he was able to get a blood transfusion and a platelet transfusion today, he is really feeling a lot better.

Chris was able to do 10 laps (approx 1 km) today without a rest and he had so much more energy. Still no signs of a fever either!

His nurse today even commented that his blood counts are high enough for him to go home. We just need to get his pain under control. Chris switched to taking his pain killers orally instead of by injection, and so far so good!

We are hoping to be able to talk to his doctors tomorrow about starting the transition to become an outpatient again. One thing we have learned here is that it is really easy for doctors to decide to make you an inpatient, but really hard for doctors to agree to let you be an outpatient.

Friday, December 24, 2010

Day +11 (post-transplant)

Merry Christmas Eve!

While we are spending the holiday in the hospital this year, we have had a lot to get excited about recently.

Chris' counts were up again today:

White Blood Cell: 0.9

Platelets: 11 (this was low, but he was still high enough not to get platelets)

Hemoglobin: 91

Neutrophils: 0.55

Yes, Chris finally has neutrophils. This is huge! And we can definitely tell the difference. Neutrophils are part of white blood cells (they make 60 to 70 percent of them) and they are responsible for fighting bacteria and fungus. So this means Chris is starting to get cells that will fight off his infection.

And they seem to be working, because Chris has almost gone 24 hours without a fever now, which is a pretty big deal. It means that Chris may finally be beating this infection. We met with a member of the infectious disease team and she was really happy with Chris' progress. They also indicated that the fact that Chris has less pain now means that he may be able to heal on his own. If not, he will not need to go in for minor surgery in two to three weeks. We are just so happy to be over what seems to be the worst part that minor surgery seemed like a walk in the park.

We had a bunch of other highlights today. Chris was able to get out of bed and walk a few laps around the ward (about 200 metres) and he was able to go down to the family lounge and watch television for an hour. You can see that he is getting so much stronger. There were a bunch of nurses on the floor that had treated Chris when he was really sick and they commented on how much better he looked.

So while we have been spoiled over the last few days with some gifts from our family and friends (there was delicious chocolates and a gift card to spa on my door step today), we have decided that all we want for Christmas this year is more white blood cells for Chris. As sappy as it sounds, nothing makes me happier each day then getting to hear that his counts are getting higher.

Thursday, December 23, 2010

Day +10 (post-transplant)

Can I please have a drum roll?

Chris' counts:

Platelets: 19

Hemoglobin: 90

Neutrophils: 0.0

And White Blood Cells....0.3. Chris' WBC are now on the rise!

Now keep in mind a normal WBC is 4.3 to 10.8, so Chris is still a long way off. But he is now defintely going upwards and getting better, so today is a good day!

Despite feeling better and getting an improvement in his counts, Chris is still battling a pretty determined fever. And it really likes to show its face at night. Last night was no different. When the night shift started, Chris' nurse took his vitals and he was a 40.2 C (that is over 104 F)! They gave him Tylenol and I started putting ice cold towels on his head to try and break his fever. Two hours later, he was still burning up and his blood pressure was way down. They called the doctor and they ended up pumping him full of fluids and then we rubbed water and a little bit of alcohol on his back. The combination of all of these things seemed to bring down his fever and stabilize his blood pressure. Since then he has gone back and forth to getting a fever (although not as bad as 40 C), and breaking his fever all day. The weird thing is, unless you touch his skin, you can't tell when he is going to have a fever. He will be feeling fine and having a regular conversation and then all of a sudden they take his temperature and he will be over 39 C. I think Chris is just trying to keep us all on our toes.

Needless to say there was not a lot of sleeping last night. When patients run a fever that high, the nurses are frequently checking his vital signs and coming in to give him more fluids and tylenol.

This is why it is especially good news that his white blood cells are coming up. Once he makes enough of those white blood cells they can go and get rid of this infection that he has been fighting for the last week.

His pain level also seems to be down a bit. Although it is hard to tell if it is just his new pain killers or not.

His nurse also told him that patients who eat the most tend to get out of the hospital the fastest, so he finished all of his meals today and drank an Ensure (high-calorie milkshakes) and several cookies at every meal.

Wednesday, December 22, 2010

Day +9 (post-transplant)

So I was REALLY hoping to wake up today and have Chris' white blood cell count be up, but unfortunately that was not the case.

Chris' counts were:
WBC: 0.1
Hemoglobin: 90
Platelets: 32
These two counts are higher because of the transfusions yesterday, so they will likely be down tomorrow.
Neutrophils: 0.0

However, tomorrow is the long awaited Day +10. Chris' doctor told us that people start to get their counts up between Day +10 and +14, so that means we could start to see improvements as of tomorrow (cross your fingers for him!)

Despite his low counts, today was a much better day. Chris is much clearer today. He is having conversations with everyone and making jokes. I think it is in large part due to having his first big sleep since being admitted. He went to bed at 8:30 pm and woke up at 8:30 am. Although he was up four times in the night, they were for just short periods and that is SUCH a big improvement.

We had a really busy morning once he woke up. First thing he had a visit to have his PICC line put back in. This is the catheter that they insert in his arm and it goes all the way up to the vein beside his heart. It makes it a lot easier for them to give Chris his antibiotics, hydration and to take blood, so it was a high priority. The process takes about a half hour and then Chris needed to go down to have an X-ray to make sure it was in the right position.

After that, he had a visit from his doctors and pharmacists to see how he was doing. Finally, since Chris had been experiencing a lot of confusion and disorientation over the last few days, he had a precautionary MRI of his head to make sure he did not have any signs of an infection in his brain. It sounds scary, but they really didn't think he had one. They just wanted to make sure nothing was overlooked before the holidays.

Now that it is certain that we will be spending Christmas at the hospital, we have decided to postpone our own Christmas celebrations until after Chris is out of hospital. There is just something unappealing about opening presents in a hospital. We much rather do that under a tree in our living room. So this weekend we are just going to pretend is like any other weekend. The only thing is we have been warned that staffing will be a little sparse over the holidays. Chris' doctor is going away for two weeks as of today, so he told Chris when he sees him again that he best be doing well and out of this room! There will, of course, be other doctors who have met and are familiar with Chris that will visit us over the holidays. I am just really glad that we did not start this process a week later. Last weekend was defintely Chris' low point, and I am glad that we had a lot of people that knew Chris really well to get us through it.

Finally, I just want to thank my surprise vistor today! Today was a good day, but surprise visits make them better.

Tuesday, December 21, 2010

Day +8 (post-transplant)

So today we hit a big milestone. Okay, it really wasn't that big, but because we have gone awhile without any good news, it felt like a HUGE milestone. It looks like Chris is starting to grow white blood cells.

Chris's count were:

White Blood Cell: 0.1 ...Now you might be saying to yourself, "Hasn't this always been Chris' WBC count?" Well just like they don't count platelets less than 10, they don't count WBC under 0.1. For the last week Chris has actually had less than 0.1, but today he officially is 0.1. It still means he has no immune system, but it does signify that he is starting to get better!

Platelets: 16

Hemoglobin: 76

Neutrophils: 0.0

Since Chris' hemoglobin was so low, he got a blood transfusion today. They also ended giving him a platelet transfusion. While they normally only give platelets if you are under 10 (or under 15 with a fever) Chris was getting some  pretty bad bruises, a bad nose bleed and they ended doing a little procedure on him today(details below), so they gave it to him to help with his clotting.

We had a lot of changes today. First, Chris' pain medication was changed for the 5th time. He is now on hydromorphone again. The pain killer that he was on before was not lasting long enough, so they switched him over and he seems a lot happier with it.

I also went home for a little bit because a) Chris seemed to be doing a bit better today (I mean, he did have 0.1 WBC) and b) I was absolutely exhausted and in need of a shower. I normally go home for an hour each night to shower and do laundry, but since Chris had a pretty high fever last night and pretty out of it, I decided to stay.

I left around 1:00 and was back at 4:00, and the first thing his nurse said to me when I walked in the door was "so we had a bunch of changes while you were gone." This is not the most comforting phrase to hear. However, it was nothing too bad. While I was gone they did minor surgery on Chris. And by minor, I mean they did it in his room, so it was very undramatic. They decided to try and drain his abscess a bit to give him some pain relief.  Originally they were very hesitant to do this  because of how low his WBC was.  The rationale was that Chris has an infection and  if they do the procedure with his WBC low the worst thing he can get is another infection. He did end up bleeding a ton (which was the reason he got the platelets) but they had it under control by the time I returned.

He also ended up getting a catheter . Since he was still going to the washroom so frequently and experiencing pretty uncomfortable bladder spasms (apparently common with transplant patients), they gave him one. I have never seen him sleep better. He is snoring for the first time since we came to the hospital.

Now today has not all been good news. Chris had a really rough night last night with his high fever and although it broke today, he has another high fever again. They switched up his antibiotics yesterday, so hopefully they will be able to kick in soon and fight this infection he has.

He also has noticed a change in his appetite. While he is still eating at every meal, he is having noticeably smaller portions and feels a bit nauseous when he eats too quickly. This is still great compared to what other transplant patients have experienced, but I really thought Chris was going to be the first patient here to gain weight by the end of this.

Monday, December 20, 2010

Day +7 (post-transplant)

I remember when we first started this blog we had some days when we would search for things to talk about. Now I find I am overwhelmed with all of the things to report.

First off here are Chris' counts:
White Blood Cell: 0.1
Platelets: 11
Hemoglobin: 90
Neutrophils: 0.0

Not much of a change.

So what happened today?

Chris had an MRI and had a consult with a doctor from General Surgery to discuss the possibility of them removing his abscess. Long story short, they found the problem and they can't do anything about it until his white cells are up. It was not good news because we were really hoping that Chris could get rid of it today.

Since his platelets were back down to being low (normal for these counts to go up and down), he had another platelet transfusion. We figured that this number was going to be down because Chris was bruising so easily when they were giving him needles last night. While he looks like he has been in a bad fight with all of these bruises, they don't hurt him at all and I am sort of use to seeing him like this.

Chris had an infusion of intravenous immunoglobulin (IVIG) to help boost his immune system. It is a blood product that is made up from plasma of at least 1000 blood donors (pretty neat). He will get this once a month for the first little while to help build his immune system.

And then because today was not interesting enough, Chris got a really bad fever (39 C) . He broke it within a few hours, but since he is continuing to grow bacteria in his blood cultures, the ydecided that his PICC line may be what was infected. This happens commonly with transplant patients and the insertion site was pretty red and a little warm. They removed his PICC line tonight and inserted a IV line for him to receive his drugs. Watching a PICC line be removed is definetly interesting as they pull a 2 foot blue tube from his arm like its nothing.  The PICC line will need to be out for at least 24 hours and then they will insert it again. They really prefer to give drugs by PICC line because all of these drugs are tough on the veins. o

All of this excitement definetly tuckered Chris out and he is fast asleep. I think I will join him.

Sunday, December 19, 2010

Day +6 (post-transplant)

I have determined that this blog now serves another purpose. In addition to keeping family members and friends informed and providing help to other people with MS who are considering this procedure, it will also be a lot of help at letting Chris know exactly what happened during this process. After the last few days I have decided that Chris will remember very little of this part of the procedure (probably a good thing) due to high fevers, high amounts of pain medication and just a lot of drugs overall.

Last night was definitely the roughest night ( you may sense this from my last post). We learned that Chris does not do well with morphine. While it did wonders for his pain, with all of the morphine building up throughout the night, he was really freaking out at night. They took him off the pain killer and gave him a drug to calm him down. He ended up having a bad reaction to this drug and in addition to the morphine, he became extremely anxious and disoriented When I came back from getting dinner he was extremely angry and convinced that his IV pump was broken (at this point he wasn't even hooked up to it). They gave him a bunch of sedatives and asked me to leave the room while they calmed him down. By 4:00 am I was able to come back in his room and he was a lot better.

They continued to give him anti-anxiety medication throughout the day until the morphine is out  his system. They have switched him to Fentanyl, which is short lasting. The benefit of this drug is that it will not stay in his system long and therefore he is less likely to get the negative side effects from it.

Today was a much quieter day. Chris got to have a shower, which really made him feel a lot better. It probably didn't hurt that he had me and two other nurses helping him out since he was pretty drugged up.

His counts stayed relatively the same:
WBC: 0.1
Hemoglobin: 87
Platelets: 18 (this meant that he did not need to have a platelet infusion today)
Neutrophils: 0.0

I am really hoping for a bone marrow transplant miracle and that all of sudden Chris is going to wake up with a higher WBC and Neutrophil count. Usually the earliest this can happen is Day +10, but since he was so good at growing stem cells with the neupogen last time (see stem cell collection portion of the blog), I just want the same to hold true this time around. We could use some good news and Chris seems to do everything differently.

Coming into this we were told all about the bad side effects of the chemo. Chris really hasn't had any of them, but has invented his own set of symptoms. We were warned about loss of appetite, nausea, extreme fatigue, diarrhea and mucocitis (sores all over your mouth and throat).Other than the infection and fever,   Chris has really not been affected by any of the regular symptoms (knock on wood!!), but he has bad pain, anxiety and has trouble sleeping. He really likes to do things his own way, so I just keep hoping that this own way involves an impressive recovery that brings him back to his regular self in time for Christmas. The hardest part for me during this part of the procedure is not being able to talk to" non-drugged-out Chris". I really miss him.

Finally, I would just like to thank our amazing friends that shovelled our driveway today. It was amazing to come home tonight to have one thing taken off my plate. I told Chris and he thought it was pretty cool too.

Saturday, December 18, 2010

Day +5 (post-transplant)

Today started off pretty well, but ended pretty bad.

Chris is still okay in terms of his health.  His fever broke today, and he still is able to eat and drink without pain. His counts are the same as yesterday. Although I would like to correct myself and point out that his hemoglobin is 96, not 46. My mom (a nurse) pointed out that he would be in a lot of trouble if his hemoglobin was 46. He received a platelet transfusion and neupogen again today. We are alsoe still waiting for him to have an MRI.

However, he had a really bad reaction to the morphine that they switched him to and to  another medication that he had today to help him sleep. Combined the drugs made him feel really confused, anxious, paranoid and angry. To try and calm him down they moved me into another room and have given him some sedatives and some anti-anxiety medications.

 It's been a long night, so that's all I have to post for today. Hopefully tomorrow will have less hurdles.

Friday, December 17, 2010

Day +4 (post-transplant)

I am pretty exhausted right now, so I won't be posting too much tonight. I will try and post earlier tomorrow to catch everyone up on Chris' progress.

Chris counts now are:

White Blood Cell: 0.1

Hemoglobin: 46

Platelets: less than 10 (apparently they stop counting after 10)

Neutophils: 0.0

Since his platelets are so low they gave him a platelet transfusion today. You could really see the difference as Chris is covered in bruises right now (I swear none of them are from me) and he is getting nose bleeds.

He also had a CT scan today to see if they could find out what is causing all of pain. The CT scan was clear, but they said it is very hard to see things unless they are really big on a CT scan, so they are going to do an MRI tomorrow. There isn't really a rush because there is not much they can do for Chris regardlress of what he has. Since his platelets are so low and white blood cells are so low, it would be far to risk for them to actually do anything for him internally.

They also determined his infection based on his blood cultures today. He has pseudomonas aerugionsa, which is a bacteria that they say is fairly common with transplant patients. They started an additional antibiotics this afternoon to treat it, and Chris' fever has been lower ever since (approximately 38.2 C)

The main issue of the day was dealing with Chris' pain medication. He is in  a lot pain, but the pain medications are making him really loopy. They are trying to find a good compromise between Chris' comfort level and mental level. I think a lot of his loopiness can be attributed to two nights of very limited sleep. He needed to go the washroom every ten minutes last night. So two nights of no sleep, in the same week where he had four nights in a row of getting up every hour. I am feeling pretty loopy myself and I am not on any pain medications.

I REALLY hoping for a good night's sleep tonight. I am a strong believer that the more sleep you get, the better you feel and Chris really needs to start feeling better.

Thursday, December 16, 2010

Day +3 (post-transplant)

Chris still isn't doing very well today. They have him on a lot of antibiotics and a lot of hydration to fight the fever. The downside to all of the hydration is that it made Chris go the washroom every 15 to 20 minutes last night and most of today. It's a bad night when you miss it when Chris only had to go to the washroom every hour (oh the good ol' days).

His counts right now are:
White  Blood Cell  - 0.1
Hemoglobin - 104
Platelets - 22
Absolute neutophil count:- 0.0 (I was told they use this count to determine when Chris can be discharged)

We have started to receive his counts now daily, so I will try and remember to include them in the blog so you can see his improvements. We also found out that Chris' blood cultures from Tuesday came back and he is growing a bacteria, so we now know he has an infection, but they still need to determine which one. Once they do they will be better able to treat it by picking a more specific antibiotic. I had Chris' doctor reassure me several times that this happens to everyone on the transpant, and that an infection is not anything to be alarmed about.

Chris has maintained his fever for the most part of the day (38.8 C), and has been really bothered by the pain. They aren't 100 per cent what is causing it, but a "pain expert" ( I don't think that was his exact title) came and saw Chris today and he thinks that Chris may have an abscess along his GI tract. He has been on pain medication all day, and they are hooking him up to a machine that will let him self-administer pain medication. When it starts to get bad, he can up his dosage (but, don't worry they have a limit so that you can't overdose). Due to all of these drugs, Chris has been really out of it today. I think he has been  a lot of entertainment to some of the nurses that come and check in on him. They will ask him how he is feeling, and he will respond  with " I don't remember your name", or "I was admitted yesterday." If you have ever seen the video "David After Dentist" on YouTube (if you haven't, google it now!), that is a little how it is like . However, every once in awhile Chris will all of a sudden wake up from a nap and seem completely normal, which is very comforting to see.

He also has a bunch of rashes and bruises all over him. He is receiving daily neupogen shots to boost his stem cells and they are causing some major bruises on his stomach. But just like a lot of the symptoms that Chris has been having, they look a lot worse that they appear.

The good news is that Chris still has an appetite. He sent me down to get him cookies from Tim Hortons today and ate all three of his meals. He also is in relatively good spirits and still always asks me how the blog is doing and reminds me constantly to update it.  I keep on asking him if he is feeling any pain,and he responds, "Have you updated the blog yet?" At least he has his priorties straight.

Wednesday, December 15, 2010

Day +2 (post-transplant)

Remember how happy we were to be home?

Well that lasted two days.

Unfortunately, Chris was admitted today and will need to stay in the hospital until his blood counts stabilize. According to Chris' doctors that will take at least 12 to 14 days, so we here for the long haul (and Christmas)

We definetly had mixed emotions with Chris getting admitted. On one hand, Chris was in a lot of pain when he was admitted and hospital are great for getting rid of that. But getting admitted for two weeks? That was not what we had planned.

It all started a few days when Chris started having pain when he went to the washroom. Chris' doctors were not that concerned and prescribed him some pain killers. Two days later we were out of pain killers and Chris was having a hard time moving around the house and had developed different rashes all over his body. When we arrived at his appointment today he had a slight fever, which automatically means he needed to be admitted. They gave him antibiotics, but three hours later his fever had actually risen considerably.

After that, the nurses gave him a bunch of drugs, ran a bunch of tests and he will likely have a CT scan tomorrow to make sure everything is okay. It was a lot of things happening all at once so unfortunately I need to be vague as to what they actually did. They did warn Chris not to scratch any of his rashes, because he is very prone to getting a staph infection (which I just googled to find out what it was, and does not sound fun!).

It was a little scary at first. They had Chris on so many drugs, especailly pain killers that he was really out of it. When I left to go home to get him his overnight things, I was freaking out a little. An hour after I was home Chris gave me a call from the hospital. He had completely forgot me leaving his room and any of the conversations we had, but he was feeling a lot better and was back to his regular self.

I am back at the hospital with Chris now and he was feeling well enough to watch television in the family lounge (although I think he has fallen asleep on the couch next to me). He also ate a full meal for dinner and asked me if I could bring him ice cream next time I go out (a sure sign that he is feeling better)

Tuesday, December 14, 2010

Day +1 (post-transplant)

Today, we went to the hospital for Chris' first follow up appointment post-transplant. Since Chris is still not exhibiting any major side effects and still has relatively high platelet levels, the appointment was fairly quick.
The view from Chris' hosptial room


They took blood tests, gave him antibiotics and went over all of the symptoms that Chris is having. We also met with the pharmacist while we waited for Chris' blood work to come back. We were basically told that although Chris is feeling okay right now, that by the end of the week he will likely start developing mouth sores (known as mucositis), losing his appetitie, developing diarrhea, and becoming extremely run down. Needless to say it was not the most upbeat meeting. However, the pharmacist did share Chris' love for cars, so they spend a considerable amount of time discussing what type of cars the other doctors drove and their favourite type of Ferraris (I zoned out during this part). This seemed to cheer him up considerably.


Chris during his hospital stay (sweet pants!)

As of today Chris white blood count is 0.1, so his chance for infection is still very high. We are taking his temperature often, and of course getting nervous any time it is slightly higher than usual. Chris had a temperature of 37.5, which is unusually high for him, so I made him retake it every half hour for a couple hours just to be sure (yah, I may be a little paranoid).


After the hospital, Chris spent most of the day napping. We tried watching a movie, but he was nodding off before we were 15 minutes into it. I think that the feeling of being extremely run down are definetly starting to kick in. While I do enjoy spending time with Chris while he is conscious (well, most of the time), since he hasn't slept through an entire night since starting chemotheraphy, I do think that all of this sleeping will help him feel better.  As I am writing this blog, Chris is actually falling asleep in his hands.

While he is not very descriptive when I ask him how he is feeling, he is saying that " he just doesn't feel well."

It looks like we have a long road ahead of us, but we are really grateful for all of the emails and messages we have been receiving. Sorry, that we have not had a chance to respond to them all, but we do read them all and really appreciate all of your advice, stories and well wishes.

Monday, December 13, 2010

Day 0 - Chris' Birthday

Happy Birthday, Chris!

Today was a great day. Chris got his new and improved stem cells, celebrated his new birthday (they consider the day that you get your new stem cells your new birthday) and officially became an out patient again.

It was great being able to go home last night and getting a full sleep. Since they warned us that Chris may still need to stay as an in-patient today, we spent a lot of time packing a full bag in case we were there for a few more days. However, today was our shortest day in the hospital to date and we didn't need to use anything that we brought to the hospital.


We arrived at the hospital at 11:00 am and they took his vitals, did some bloodwork and checked his breathing. At 1:15 pm, Chris had his stem cell transplant.


It is a lot less dramatic then other transplants, like liver or heart, but it still was really neat to see. They store Chris' stem cells in big container filled with liquid nitrogen and when then open it up the air fills with steam. Next they soak Chris' bags of stem cells in warm water to defrost them and then he is given them back intravenously. When Chris gave his stem cells, they looked to be a salmon colour, but after they have removed the T cells and added the preservative they looked a faint yellow.


The whole process goes really fast. Studies have shown that the faster the patient receives the stem cells, the faster patients tend to grow their immune system. They think that this is due to the fact that once unfrozen, the preservative kills some of the stem cells. Chris received his stems cells in less than 25 minutes.

At the end they asked how Chris was feeling, and he replied, "I feel like a new man." It was definetly really exciting getting his new stem cells. We are so hopeful that this procedure will work and we will never have to worry about his immune system hurting him again.



Chris' stem cells

Throughout the procedure they monotired Chris' vitals, and then he needed to stay around for an hour to make sure he does not have a bad reaction.We also got a schedule for Chris' new drugs. Since he is no longer getting chemo or ATG, there are luckily less drugs.

Chris now takes:
Famcyclovir to prevent viral infections 3 times a day
Fluconazole to prevent fungal infections once daily.
Pantoprazole to prevent heartburn once daily.
Ursodial to protect his liver 4 times a day.
Chris also receives antiobiotics and neupogen (to boost stem cell growth) daily through infusion at the hosptial.
He also has a bunch of anti-nausea and sleep medications to help him out as needed.

Now that Chris is an out-patient again, we are back to the hospital daily until his blood counts are up again. They have warned us that Chris will get progresively sicker over the next two weeks, so they will also be monitoring him to make sure he eating enough and is strong enough to be at home.
On a side note, there was one really big downside to today. Stem cells smell. And since stem cells smell, and Chris got his stem cells today, it really makes Chris smell.

What does it smell like? Cream corn. Not the worst smell in the world. But it smells so strong. I make Chris sit a foot a way from me. He can't smell it, but everytime he comes near me I consider taking his anti-nausea medication. They promised it will only last for 24 hours though. I really hope it doesn't last a minute longer.



 


Sunday, December 12, 2010

Day -1 (pt.2)

So we are finally writing this blog from our house, and it feels great. Chris finally got to leave the hospital at 7:30 tonight (4 days and 3 nights after he was admitted). We are due back at the hospital at 11:00 tomorrow, but being able to shower and sleep at home makes a huge difference.

Now that today is done we can officially say that everything from this point forward is making Chris healthier. For the last 9 days Chris has been pumped full of drugs aimed to kill his immune system and make him sick, and now every drug they give him is to help him stay healthy and grow back an immune system. This starts with getting his stem cells tomorrow!

Last night did not go as smoothly as we had hoped. While Chris did not have any issues due to the ATG, all of the chemo has done a number on his gastrointenstinal tract and he had pretty bad stomach and back pain. Luckily, because he was still hooked up to an IV, they were able to give him some pain killers and gravol and he was better within an hour.

Today was pretty uneventful. Chris started his ATG at 1:00 (for 6 hours) because they need to wait 24 hours from the last dose. We spent the day watching TV in bed, walking laps and catching up on our lack of sleep. One of the highlights was at 12:30 when Chris officially could stop going to the washroom every hour since the Cyclo would no longer damage his bladder. However, since Chris was hooked up to hydration all day, he ended up having to go more frequently that that (pretty ironic, I guess).

Before we left we went over a bunch of new medications for Chris, which included antifungal and antibiotics to make sure he does not develop an infection. As of this morning Chris' white blood cell count was 0.7, and he will have no immune system for tomorrow, so he needs to be extremely cautious. We also found out tonight that if Chris is admitted with an infection, they will keep him in this hospital until his counts are up. That means if he has an infection early on, he could be in the hospital for a couple of weeks. So we have both super paraoid and have washed our hands at least 50 times today.

Anyway, we only have about 12 hours until we are back at the hospital, so we are going to try and take advantage of our time off. I have a glass of wine to relax and Chris has a bowl of ice cream. He needs to gain back the weight he loss in the hospital.

Day -1 (pt.1)

We are going home today!!!

Okay, full details about the day to come later, but we just found out that as long as everything goes smoothly with the ATG today, we can get a pass to go home tonight.  I had to share this now, because we were just so excited.

Saturday, December 11, 2010

Day -2

Today was a much better day. Chris finished his Chemo (yippee!!) and only has one more day of ATG. He doesn't have much of an appetite, but he is still eating all of his meals.

However, since Chris has such a high dosage of cyclo, the doctor decided that it would be best if Chris stayed in the hospital for another night. I think someone on 5 West must really like Chris, but apparently don't want to see him go. Although, the doctor did promise (by promise I mean he said, "I think") Chris can go home tomorrow.

This was a big disappointment for Chris, because he was really looking forward to going home tonight.  The steriods that he is on make him really anxious and jittery, and he hates having to stay in his hospital room. To try and get rid of his "cabin fever", we went for a walk around the ward. Chris is on a locked section of the hospital and he has to wear a mask when he leaves his room, but there is a nice 100 metre route that we can for a walk around. We ended up doing 2 km of walking today (yep, 20 laps) around the ward. Chris, of course, has the squeeky IV machine, so people could hear us before we are coming. Maybe we will annoy the other patients and nurses enough that they will just send us home to get rid of us!

Also, to help Chris feel better tonight we are going to try and take over the family lounge on the floor and watch the Leafs - Habs game. So if anyone has any connections with the Leafs, could they please let them know that they need to win tonight to help cheer Chris up

In terms of Chris' health, he is feeling healthier, but we are starting to see the signs of the chemo and ATG.

Chris white blood cell count has plummeted in the last few days, so we need to be extremely precautious. At the beginning on the week he was 10.8 and by today he was only a 3. A normal white blood count rate is 10.8 to 4.3. Chris will eventually hit 0 before this whole thing is over.

He is also starting to loose a bit of weight. When we started this, he was 182 lbs (mainly due to all the ice cream he ate, because he needed to "bulk up for this") and he is now down to 176  lbs. We aren't really that concerned about this, because when we got married less than 3 months ago he was 168 lbs (yah, he ate A LOT of ice cream).

Friday, December 10, 2010

Day -3

Am I the only one who can't wait until Monday? I don't think I have ever dreaded a weekend before.

They are keeping Chris in the hospital for another night. We may get to go home tomorrow (they are making a day-by-day judgement call), but Chris is finding it a lot easier to go to the washroom every hour when he is just getting IV hydration all night. He hated having to force himself to keep drinking Gatorade every hour. The only downside is that Chris had his vitals checked every hour too (since he was still fighting a fever until this morning) and his washroom breaks and vital checks were never at the same time.

We really are happy that we stayed the night yesterday. Chris ended up going on IV hydromorphone for back pain and IV anti-nausea medication all night. He still ended up being sick multiple times and looked pretty rough today. However, he did get more sleep and as an in-patient they bring him all of his medication and meals, so it really makes it a lot easier.

Since Chris had such a strong reaction to the ATG yesterday, they gave it to him over 6 and half hours today, and it seems to be a lot better. He spent most of the day sleeping, but was back to his usual self around dinner.

We also got moved to a nicer room today. It even has a nice sitting area for me :)  They have a divider in the room so that I can sit with the lights on and windows open on one side (and write this blog), and Chris can sleep (like he presently is) with the lights off on his side. It also faces a construction site, which most people would not like, but being the engineer that he is Chris likes watching to see what they are doing and letting me know
the type of building material they are using (I have learned a lot about concrete made for cold temperatures!)

Now we just need to get through this weekend! Two more nights of no sleep, one more day of Cyclo, and two more days of ATG until Chris gets his stem cells back!

Thursday, December 9, 2010

Day -4

So this post may be a little short and not make a lot sense, because I am pretty exhausted.
Last night we made in through the night problem free. However, getting up every hour on the hour is exhausting work. I seriously do not know how we are going to do this for another three days.

We got the hospital at 7:30 this morning and everything was running like clock work.  He had all of his tests done, he had two hours of hydration, two hours of cyclo, and all of a sudden it was noon and time to start the ATG.

Even that seemed to being go off without any problems, but then at about 3:00 that all went downhill. I think it is a trend during this procedure, that everytime someone mentions that there is a possibility that something could happen, it does happen to Chris (poor kid!)

They told us some patients have problems with their bladder when they are on cyclo. Chris did
They told us some patients experience pain with neupogen. Chris did.
They told us that some patients get allergic reactions from the PICC insertion. Chris did.
They told some people experience bad side effects from the ATG. And yes, Chris did.

At about 3:30, Chris started getting a headache, so they gave him some Tylenol and Benedryl . Then about 20 minutes later, he started getting muscle pains, especially in his back. They decided to stop the ATG to give him a break, and when it continued to get worse they gave him some intravenous Demerol. Unfortunately, the Demerol made him feel extremely nauseous and he was really sick. Even after all of that, he was still getting really bad back pain to the point that he couldn't lay down or sit down.
They tried giving him additional Demerol, but over a longer period of time. While it managed to bring down his back pain, he was sick again.

We ended up meeting with the pharmacist and she was nervous that Chris was this nauseous. Since Chris still needed to go to the washroom every hour, they wanted to admit him to the hospital so that they give him the rest of the ATG over a longer period, monitor his fever (yes, he developed a slight fever, but it was not due to an infection just the drugs), and pumps of full of fluids so that if he continued to be sick that he would still be able to the Cyclo out of his system.

It ended up being a really good idea because Chris ended being up sick again after that, still has a  fever and is showing early signs of other side effects from the drug. Apparently, it is common for patients to develop severe shaking due to fever, but they are able to treat it quite easily.. Since we  have to be back at the hospital for 7:30 tomorrow morning anyway and he still has another 3 hours of the ATG, it means that we might get a little more sleep.

From now on I would prefer it if doctors, pharmacists and nurses would not tell us what happens to "some patients", because I feel like it is just giving Chris' body ideas.

Wednesday, December 8, 2010

Day -5


Thirsty? I was paranoid that Chris wouldn't have enough liquids
for the Cyclo portion, so I went out and bought orange juice,
apple juice, milk, 12 cans of diet coke, 12 cans of lemonade,
12 bottles of Gatorade, and 4 sparkling orange drinks.
 Chris pretty much just summed up today. Right before I started writing this blog, he turned to me and said, "I hate Cyclo."

For some reason, this type of chemo just does not sit well with Chris. Within an hour of them starting the chemo, Chris was noticeably different. He was tired, had the chills (but no fever!), and just felt awful. He also is not a fan of having to make himself go the washroom every hour. However, this time he seems to be able to go to the washroom every hour (knock on wood) and he doesn't seem to be retaining the liquid like he did during the stem cell collection (see previous posts).

We were at the hospital at 9:00 this morning, which we learned is the absolute worst time to arrive. The hospital is apparently experiencing high patient volume right now. Due to this,  finding a parking spot is maddening. After they did the usual tests (vitals and blood), Chris started on two hours of hydration, then two hours of Cyclo, followed by another two hours of hydration. During this time, he did some baseline tests with the physiotherapist, who recommended a bunch of exercises for Chris during the procedure. We also met with the social worker again, who is really great. She asked us a bunch of questions about our family, our living conditions and how we were going to cope during the procedure.
We also met with the pharmacist and one of the clinical physicians on the floor to discuss whether Chris would remain an out-patient for the Cyclo. We decided to try the Cyclo as an out-patient, but if Chris has any problems again, or if he is just too tired to being going back and forth then they will admit Chris for the Cyclo portion.

However, Chris may still be admitted despite our best efforts even if he can manage the Cyclo and staying awake for four days. Apparently we are expected to get 50 cm of snow on Sunday, and since it is a known fact that everyone loses their ability to drive in Ottawa when we get our first big snowstorm of the year and Chris' transplant is really time sensitive, we may stay over the Sunday night to make sure that Chris is there without any issues.

Tomorrow, we are starting bright and early at 7:30. Since Chris is starting the antithymocyte globulin (ATG) tomorrow we are going to be there all day. We will do four hours of ATG, followed by two hours of hydration, two hours of Cyclo and then another two hours of hydration. The may give the ATG over a longer period of time (up to 10 hours) if Chris has an allergic reaction to the ATG. This happens in some patients, however, if they slow down the infusion it will stop the reaction.

Until then we will be up every hour on the hour, so if you can't sleep tonight, feel free to send us an email or text because we will likely be awake :)

Tuesday, December 7, 2010

Day -6

It was great having a day off from the hospital today. The hospital did call though and we will be starting up at 9:00 am  tomorrow. We were really happy about this, because it is nice to get it over with and if anything goes wrong it gives us lots of time to call them and not use the emergency after hours number. You may remember that everytime something goes wrong we tend to go to the hospital at midnight.

 Chris still had to take his medications, make sure to rinse with the saline rinse (approximately 8 times a day), take his temperature (no fever!) and monitor his liquid input and output. So far, he seems to be inputting a lot more than he is outputting (too much info?), so it is something that we will definetly bring up to his doctors tomorrow. We also started packing a little suitcase in the event that Chris is admitted, so that we will have some overnight things ready at a moment's notice.

Luckily, Chris still has not had any major symptoms. He does find that he is really jittery and anxious (as if he had drank 8 cups of coffee) and is still finding it hard to sleep despite taking sleeping pills. We had our first opportunity to sleep in this morning, and Chris was awake at 7:30. For people who don't know Chris well, he has been known to stay in bed for most of the morning when given the opportunity.  He also started taking more anti-nausea medication, but has not yet been sick.

I spent the day trying to clean the house as much as possible, including taking Lysol wipes to anything that I think Chris may touch. I think I seriously may be getting paranoid about Chris not getting any germs.

After today, we will be at the hospital every day until the transplant and then I am not really sure what to expect. We know that Chris will likely get really sick after this, but the only previous patients that we spoke to did the treatment as an inpatient, so they stayed in the hospital for at least an additional week or two. I am assuming that this means that we will be going to the hospital on a daily basis just to check Chris' blood and give him antibiotics. While on one hand, I don't really like the idea of Chris living in a hospital for a week, there is definitely a part of me that likes the idea of having trained medical professionals working just outside Chris' door.

Monday, December 6, 2010

Day -7

Today was a big milestone. We are now only a week away from Chris' stem cell transplant (meaning no more chemo) and Chris finished his Busulphan portion of this whole process.


Chris with our portable tree so that we can
celebrate wherever we are on Christmas!

It's funny, because going into this Busulphan was the chemo drug that we were most scared of. In the clinical trial for this procedure in MS patients, there was one patient death and it was due to liver failure caused by this chemo. It also listed scary side effects, such as seizures and lung problems.  Knowing this, I guess we sort of assumed that as soon as Chris started this drug, that he would become extremely sick. Turns out...not so much. Now we know that many of the side effects caused by chemo drugs are not felt until at least a week later. However, by that time Chris will have been treated with two chemo drugs, ATG and about 20 different medications, so it will be a bit harder to point the finger at one culprit. And the real reason I think I personally like the Busulphan so much is because I never had to rush Chris to hospital because of it yet. Our tally to date (Busulphan 8, Cyclo 0)


Which bring us to the next chemo drug: Cylcophosphamide. Chris will get a rest day tomorrow. A day that we have REALLY  been looking forward to. Chris will continue to take his medications tomorrow and we need to start tracking all his liquid intake and outake. They gave us a really fancy contraption (a plastic urinal) to do it too!  It is just an extra precaution to ensure that Chris is able to empty his bladder as with Cyclo this is extremely important. We spoke with one of BMT doctors and we are planning on playing it by ear on whether Chris needs to stay in the hospital for this portion. We will need to get lots of rest for tomorrow, in the event that we will be up every hour on the hour for the next fours days!

We also had the chance to meet with the program's nutritionist and physiotherapist today. Their main concerns were making sure that Chris was able to get enough nutrition when he starts getting nausea and mouth sores and that he doesn't lose too much muscle mass when he is tired and not feeling well.

We went over all of the foods that Chris should stay away from (raw eggs, deli meat, uncooked vegetables, any fast food etc.) and the kind of food he needs to eat (high calorie, high protein). The nutritionist even talked about trying to jam pack as many calories as you can into your food. Are you having a calorie milkshare like Ensure? Well you should put in a blender with ice cream, chocolate, peanut butter, and maybe even throw in some cookies, and you can get up to 700 calories in one drink. Since I was trying to squeeze into my wedding dress less than three months ago, it is taking a lot to beat this into my mind that I need to buy the product that has the MOST calories possible.


Some of the patients that get really bad side effects, especially mouth sores, find it really hard to force themselves to eat, so we even discussed the possibility of a feeding tube. This absolutely horrified me at first until I found out what a feeding tube was. I was under the impression that it was a giant tube that they put down your throat that you can't talk with (you know, the things you see on Grey's Anatomy and House all the time). Well it turns out that a feeding is a tube smaller than an IV and it just goes in your nose. You can't feel it and you have no problem talking with it. All of this TV drama really does distort your medical knowledge.


As convenient as a feeding tube sounded, Chris has already become OCD about rinsing his mouth with saline to prevent sores. There is just something more appealing about eating your own food.


As of today, Chris is doing really well. He has started taking more anti-nausea medication and doesn't feel as great as he did before, but considereing his last four days, he is pretty much my hero for how well he is doing. He also continues to ask me "How are you doing? Are you okay?". He tends to ask me this when his vein is being injected with a highly toxic agent. I think I picked a keeper :)

Sunday, December 5, 2010

Day -8

Who would have thought sitting in bed for hours would be so tiring?

We are now finished three days of busulphan with only one more to go and we are both exhausted. This is most likely due to the lack of sleep we have been having lately. Luckily, however, the sleeping pills that they put Chris on yesterday (Zopiclone) worked much better. They also made him a lot funnier. Chris decided to take the pill an hour before we went to bed, because he felt the Ativan took too long to kick in. We were watching the last period of the Leafs game when he turned to me and told me he felt drunk. By the time we went to bed, he looked like he was drunk as he swayed back and forth up the stairs. By the time I went to turn off the lights, he was making absolutely no sense, but fell asleep instantly.
This morning he could not remember any of this. He did not remember watching the end of the Leafs game, the shoot out, that the Leafs had won, or that we had high fived repeatedly when it happened.

The other medication that they gave Chris yesterday was for his hiccups. Unfortunately, it has not been as effective. You may remember from previous blog posts that Chris gets hiccups from taking steriods. One of his anti-nausea medications, Decadron, is a steriod that Chris needs to take for ten days and it has caused him to hiccup almost non-stop. The episdoes can last for hours at a time, seperated only by short periods of relief. The best way for Chris to get rid of them remains resting his head on our cold, kitchen counter with all of the lights off. Weird? Yes, but effective.

Today we receieved a mixture of saline and water that Chris needs to start rinsing his mouth with. Since, it is very common to get mouth and throat sores with the chemo regimen that Chris is on, they want him to start taking it as a  preventitive measure.

We also discussed with the nurse today the idea of being admitted during his cylclophosphamide. This is the chemo drug we do not have very fond memories of. They aren't sure why, but Chris retained all of the water he drank when he took the cyclo, which is problematic when you need to go to the bathroom every hour. They aren't sure if it has something to do with his MS and since all MS patients that did this procedure before did the whole procedure as in patients, they definetly think it may be an option. We may try and bring it up with one of Chris' doctors tomorrow before we get our break day on Tuesday.

Finally, the only new update for today is Chris is now required to wear a mask whenever he is in the hospital and not in his room. Since this time of year is full of people with airborune illnesses (and they all seem to want to hang out at the hospital), they want to take every precaution to make sure Chris is safe. It's funny the way people react to someone wearing a mask. When we went into the hospital this morning, nobody thought twice about standing near Chris. However, when we left you could definetly tell people were keeping their distance and glancing over at him with concern. I am sure I would do the same thing in their position, but at the same time I just wanted to announce to the elevator "He is wearing a mask because he doesnt want to catch anything from YOU!"

Saturday, December 4, 2010

Day -9

Chris is  now halfway through the Busulphan now and starting to get some side effects from the chemo and the drugs.
His blood results showed that his kidney was having trouble with chemo, so they told Chris he needs to try and drink a lot more liquids to try and dilute the chemo.
His blood sugar is also pretty high, which apparently is pretty common with one of the drugs he is on. They are going to monitor it and if they don't come down, they will try putting him on something else.

Some of the other side effects are not as serious and others are a litttle humourous. Chris definetly has been sufferieng from a little bit of "chemo fog." He came downstairs to grab a pair of scissors to cut open a milk bag and ended up going upstairs with the TV remote.
My favourite example of his mind lapses came when he was Christmas shopping online for me last night. Chris wanted to surprise me this year and pick out a gift without any hints.

After he had been on the laptop for an hour and did his best to make sure I didn't see the screen, he glanced over at his pills and said, "Do any of my jewellery cause these side effects?" He then looked at my shocked and said, " I mean do any of my gifts cause...I mean do any of my medications cause these side effects?" I guess he sort of let it slip what I was getting for Christmas this year, but I can't say that I am that disappointed. Chris on the other hand has been beating himself up that he managed to ruin another surprise.

To cheer him up, we spent the night decorating the house and our beautiful tree for Christmas! We have photos for your enjoyment :)

Unfortunately, in addition to the mind lapses, Chris also had a really hard time falling asleep last night. He took an Ativan at 10:30 when we went go to sleep, but still had not fallen asleep at 4:30. He took another Ativan at 4:30, which seemed to work and he was able to sleep until 7:30 when we got up to go to chemo this morning. When he woke up however, he had absolutely no balance. He looked like he had been drinking heavily as he walked around to the bathroom, and I needed to steady him multiple times. While some of the drugs can cause dizziness, they also think that for some reason the Ativan or another drug has triggered an MS symptom. They perscribed him another sleeping pill for tonight and they hope to see an improvement by tomorrow.

Today's chemo was mostly uneventful. We arrived at 9:00 and Chris was hooked up by 10:45. We also had a room to ourselves today, which was really nice! Chris' nurse also tried putting on a different dressing on his PICC line, because it was still really red and irritated.

For the rest of the night, we are just planning on taking it easy and hopefully getting some much needed sleep!

Friday, December 3, 2010

Day -10

Today was Chris' first day of chemo for the stem cell transplant, and it was a very long day. We reported to admissions at 8:15 and Chris was formally admitted to the hospital. The benefit of this is that Chris can opt to stay any night, if he isn't feeling well enough to go home. However, for the first time, we were in a shared room since Chris is not currently at risk for infection.

After that it was off to the immunocompromised section of the hospital for bone marrow transplants and blood cancers (5 West), where Chris had all of his vitals checked, blood work done and we did a bunch of patient questionaires. They also cleaned and redressed Chris' PICC line. Since the PICC line goes directly into the large vein beside the heart, they have to be really careful about anything contaminating the site.

By about 11:00, Chris was finally hooked up to the Busulphan, which he received for 3 hours. Throughout the chemo, we met with a pharmacist, doctors, a social worker, and the assissant to the manager on the floor. We are trying to find out new ways to pass the time while at the hospital. We found out that the hosptial has wireless Internet, the only problem is that it rarely works (by rarely, we mean never). Since we were in a shared room, we couldn't watch a movie or a television show. So instead Chris played 17 games of Free Cell and I am almost finished my second book.

We also received Chris' medication chart for the next little while.
Dilantin to prevent seizures (three pills three times a day for the first day and then once a day after that for five days).
Ursodiol to protect the liver (one pill four times day).
Allopurinol to protect the kidneys (one pill once a day for nine days).
Zofran to prevent nausea (one pill twice a day for 10 days).
Decadron to prevent nausea (two pills twice a day to prevent nausea).

Chris was also given a bunch of other medications to use on an as needed basis.
Prochlorperazine for additional nausea (one pill every four hours as needed).
Maxeran and Benadryl for additional nausea (two pills and one half pill of Benadryl every 4 hours as needed).
Ativan for sleeping problems and anxiety (one pill every six hours as needed).

So far, we are much bigger fans of Busulphan than the Cyclophosphamide. Other than feeling a little dizzy, Chris is doing well. He can continue to drink coffee and we don't need to wake up every hour on the hour (Busulphan 3, Cyclophosphamide 0).

Thursday, December 2, 2010

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!