Sunday, August 19, 2012

Transplant Stuff

Remember that time I was like, "Yeah, I'm going to post everyday about the transplant". Well, if you couldn't tell, that didn't happen.  I guess I didn't realize how exhausting this adventure really would be. The internet is horrible at the hospital so I am not able to upload any photos and by the time I get home I have no desire to get on the computer. So I shall tell you what has happened: The night before the transplant, Derek thought it would be appropriate to get rid of the sweet ‘fro he had going.  I must admit, even I was jealous of the awesomeness his afro encompassed.  But he shaved it and for a couple minutes even had a Mr. T like afro Mohawk.  

Here he is seeing the last of the outside of the building for the next month.  
We had to be at the hospital at 5:30 in the morning, which was tough since we didn’t even know that time existed.  He had to get surgery to get his chest catheter in and after that they just admitted him and set him up in the bone marrow wing of the hospital. 
We had a little snafu when I waited in the waiting room for 4 hours for him to get out of his 15 minute surgery.  The Mayo Clinic has this great system where each patient has a number and you are able to keep tabs on the patient if they are in surgery, when they get out, etc.  Derek’s said he was out of surgery so I gave it an hour to let him recover.  I went up to the desk and asked when I could see him and they said they would let me know but it would be soon.  Since he was getting admitted the process was a little different.  I waited for another 2 hours, starving, which if you know me is not when I am at my best.  I finally was so annoyed that I went to check on him because I was getting worried, just to find out they had already moved him and forgot to let me know!  I was so mad I just broke into tears.
Anyways, I stomped all the way to the bone marrow wing where the nice nurses showed me to my husband in his nice, cozy room.  They messed up and brought him 2 dinners but he didn’t complain.  We met with the Nurse Practitioner and Derek had to have a couple of unpleasant tests done.   

He then started chemo the next day.

He did chemo everyday for the next five days. Each day he got sicker and sicker. They had to put him on a schedule of anti-nausea meds because he was getting so sick.

Finally, on Friday the day came. The transplant!
Jason came in the morning and got all set up. The extraction process is similar to dialysis. He had been getting shots for a week that pushed the stem cells out into his blood and the machine filtered his blood and pulled out all the cells.

Derek was able to go visit Jason, since it is all on the same floor. The process took a few hours. Once the cells were extracted they had to be sent to a lab to get tested. At around 6 in the evening, the transplant was ready to get started.  It really was a simple process.

They infused the cells into Derek over an hour and a half. They had to keep tabs on his blood pressure and temperature to make sure he wasn't having a reaction to the infusion. Once it was all done, a nurse stayed in the room for an hour monitoring Derek to make sure he was okay. 

Today is Day +2 and he is feeling decent. He hasn't been able to eat today because of his persist nausea but he is in good spirits.  For now it is a waiting game. His blood counts are dropping, which is to be expected. But once they start increasing again, that means that Jason's cells have engrafted. We then have to wait to see how he does and make sure he does not have any complications. This could take anywhere from 2, 3, 4 or more weeks. For now, we are really hopeful and we are excited to begin this new journey in our life. I am always amazed at the love we are given by family, friends, and strangers. So thanks, we like you too.

Tuesday, August 7, 2012

The Day Before

I guess I should get back into the groove of blogging because, you know, I won't have anything better to do for the next month.  Today, we had our day before the transplant visit (this is the third one). But this time, we're all good!  Derek had gotten sick last week so they pushed the transplant back a week.  Tomorrow, he officially checks in to his glamorous and fun filled stay at the Mayo Clinic.  He got checked out by a P.A. and then his doctor came in, gave his blessing, and we left.  We are excited but seem to have a looming cloud hanging over us. 

For those who have no idea how this type of transplant works, this is a 3-6 week process within the hospital.  He goes in tomorrow and has surgery to get a catheter put into his chest.  Which looks a little like this:

It dangles from the outside of his chest and makes it so multiple fluids can get to him.  It is pretty gross looking seeing it on a person, so you're lucky this is all you get to see. 

He may also start his anti-rejection meds tomorrow but I do not know for sure.  On Thursday, he will start chemo.  He is in remission but the chemo is to kill off his immune system completely.  He will do chemo everyday for a week.  Next Friday, he will get his brother Jason's bone marrow cells injected into him.    Jason also has a process where he gets an injection everyday for a few days that stimulates the stem cells into his bones and then pushes those cells out into his blood.  Jason will then get his blood filtered, similar to dialysis, and those cells will be extracted.  On that same day they will put them into Derek. 

Then the waiting game begins.  Derek's blood work will show that he has none of the proper ingredients to fight infections.  Once those numbers start coming up, that means that Jason's cells have been engrafted.  Once Derek's immune system is built back up he can come home.  However, complications are not a rare deal with this type of transplant.  Because Jason and Derek had a 10 point match in their bone marrow, the likely hood of Derek rejecting the cells is a slim 2%.  So rejection is not likely.  But, Graft Vs. Host disease is up to a 50% likely hood.  A small dose of Graft Vs. Host is not threatening and can appear in something as small as a rash.  But Graft Vs. Host disease can be deadly, killing off different organs like the liver.  The fatality rate of this type of transplant is 20%, which is a terrifying number if you ask me. 

If no serious complications occur, Derek can be home in as little as 3 weeks.  We then will have to still make the trek to the Mayo Clinic every single day for a few weeks until Derek gets farther and farther out of the danger zone. 

For the purposes of letting everyone who wants to be updated about his progress I will attempt to blog everyday.  Let's hope for a super boring blog. 

Everyday before the actual transplant is numbered in the negatives, so tomorrow will be Day -9. The day the transplant occurs is Day 0 and everyday after that is Day +whatever.  Here's to hoping for the most boring 109 days of my life. 

Unfortunately, I know this will not be true.  I feel a little like this:

Over the last few days I have felt my blood pressure rising, I'm pretty sure I've developed an ulcer, and there are times when I feel a little nutty.  I am so, so scared.  This is suppose to be the light at the end of the tunnel but I can't help feeling overwhelmed and a little pessimistic (or as I like to call it, realism).  There are so many things that can go wrong and that fatality rate scares the crap out of me.  Really scares me.  Where I have had to think about things if they do go wrong.  And frankly, I am barely strong enough to deal with the thoughts, I can't imagine if those become a reality. I am also stressed about poor Camden.  He will not get to see Derek for those days he is in the hospital (minus through skype) and for a daddy's boy I imagine this will be tough. 

I am grateful for fantastic family and friends who have been loving and supportive.  I am grateful for a fabulous ward who has truly taken care of us.  And I am grateful to have my faith.  Even if I can not foresee what is to come in this life, I do know what will happen in the next and that gives me incredible comfort.

Thanks for all the prayers and kind words, we need them.  Tune in to see what tomorrow is like.