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 35

So we finally have received a date from the Bone Marrow Transplant team.

Chris will begin the second half of this procedure on Thursday, December 2. We will be going in for our planning meeting (similar to the one we did on Day 1) where we will get our full list of appointments, as well as a detailed chart of all the drugs Chris will be on.

Next, on Decemeber 3, Chris will be admitted to the hospital and have his PICC line inserted and start chemo again. While Chris will technically be doing out-patient treatment, they will admit Chris as he will be at the hospital everyday and will very likely need to be admitted overnight throughout.

While the full schedule still needs to be approved by Dr. Atkins, we were told that the stem cell transplantation is tentatively scheduled for Monday, Decemeber 13. This is often referred to a "Day 0". After this day you start recovering and building a new immune system. Some people even consider it their new birthday. Chris will likely try and pull off having two birthdays now.

I didn't realize how incredibly nervous I was about this until we found out the date. I am finding the need to make lists of things we will need. What to pack in our hospital bag? What to buy for groceries that Chris will be able to eat? Having a Type-A personality can really drive you insane during something like this.

On a much brighter note, Chris and I will be celebrating our two month wedding anniversary tomorrow! Yes, I know, it is pretty huge milestone. But I figured since we missed our one month anniversary (if you look back you will see we celebrated by getting to do Chris first neupogen injection! It was very romantic) and our three month anniversary is sort of out the window, that two months is as good a reason as any to celebrate.
So tomorrow I have assured myself that Chris will:
a) remember, and
b) come up with some romantic gesture, an elaborate surprise, that will surely knock me off of my feet and remind me why I married him.

He, of course, did NOT just realize these facts after finishing reading this blog post and is NOT now sweating profusely.

I'm kidding. Happy Anniversary, Chris! I hope our next month of marriage is full of little surprises and lots of luck!

Day 21 - A Setback

So today we ended up going into the hospital where we received both good news and bad news. To start, we ended up going into the hospital because last night it appeared that the rash that Chris was having had spread to the rest of his body. He had marks all over his stomach, chest, back and head. When we called the hospital to let them know, they were a little concerned and asked us to come in so that Dr. Atkins could take a look at Chris.

So here is the good news:
- The rash was nothing serious. It turns out all the marks all over his body are seperate to the ones on his arm. The ones on his arm are likely an allergic reaction to the tape that they used when he had his stem cell collection. The marks on his body are due to Folliculitis (an infection of the follicles). It is nothing serious and they will likely clear up on their own. It apparently is really common in immunocompromised patients. Chris needs to continue using the hydrocortisone and it should clear up.

Here is the even better news:
- When Dr. Atkins walked in the first thing he said to Chris was, "Wow, you still have all your hair! Are you sure you even had chemo?" That definetly felt great to hear. Everyone seemed surprise with how well Chris is doing. Chris also was cleared to have visitors as long as they aren't sick, to go out to restaurants (as long as it not fast food or any of the high risk foods), and to leave the house (as long as we aren't going to really busy areas, i.e. the mall on weekends, the movies or sporting events).

Now here is the bad (and frustrating) news:
- We found out today that since the bone marrow transplant (BMT) team received an ususally high number of leukemia patients this Fall, that Chris is now being bumped until the beginning of December. They can only have a limited number of patients go through the BMT at the same time, and since leukemia patients are much more time sensitive and in a far more serious condition, they get to go first. It is completely understandable and extremely frustrating at the same time. We were hoping after we heard how great Chris was doing that we could start as early as next Thursday and now we have another month of waiting and thinkng and more waiting.

We also now need to change our plans. Originally I was planning on taking off work until the end of December, work from home in January and then return in February. Now that Chris won't be starting until December he will still be needing me to be off work until the end of January. Since I am already maxed out on sick leave, I will need to look at working from home right now. Chris' doctor does not think that Chris should be going back to work. Even though he feels fine, he is still susceptible to infection and if he overexerts himself or comes into contact with people who are sick, it could delay his BMT even longer. The longer we wait, the more likely Chis will have a relapse since he is not on any MS medications.

Finally, we did get some updates from Dr. Atkins on the procedure. Since we had been seeing a bunch of different doctors, we had been getting a lot of different answers when asked about the specifics of Chris' procedure. Since Dr. Atkins is the expert on the treatment for MS patients, he was able to clarifiy some things for us. Instead of having a Hickman catheter, Chris will have a peripherally inserted central catheter  (PICC), which will be inserted in a vein in his arm and fed up his vein into his chest (kind of gross!) He will be able to keep it in for six months, and he will need to keep it dry.

We also learned about the chemo regimen Chris will be on. He will start with four days of busulfan, one day of rest, then four days of cyclophosphamide, then another day of rest, and then two days of antithymocyte globulin.

So now that we have a better grasp on what we can expect, he unfortunately will not be getting it until December.