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Day 21 - A Setback

Posted Nov 03 2010 1:58pm
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.
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