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.

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.

 



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.

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).

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!

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.