December 13, 2010 - Demon Globulins! - 11 days to transplant

Hello everyone!

Well, it was an eventful day for us. I wouldn't say in a good way either. It started out so nice and so unfortunate that it didn't stay that way. That is one thing I will say about all this... you just never know from one minute to the next what will be thrown at you. First of all... a couple things happened since the last post. On Friday, Alex's radiation doctor called and wanted to see us 30 minutes early on our appointment today. And then... Sunday I got a call from the clinic saying that Alex's test they did on Thursday (remember the snot test) came back positive for Rhino virus (common cold) and they wanted to do an IV of globulin today after the radiation appointment. Ok... no biggie... should we come before the radiation appointment? No they said... the infusion will take about 3 hours... so you better come after. NICE!

We started out our drive up to the Huntsman Center joking and laughing in the car. (Time 10:02am) In a blink of an eye Alex was sick in the backseat and miserable. SO, we show up 30 minutes before our scheduled appointment. Alex is sick and laying on the couch in the waiting room. Finally at our scheduled appointment time I went back up to the front desk and made my frustration known. We were finally shown back to the examination room. The doctor finally stopped by at 10 minutes after our regular appointment time. NICE! He said he forgot to talk about a common side effect when we met with him last week. That side effect is cataracts. He said with the amount of radiation that she received 2 years ago in combination with this round of cranial radiation, mixed with the total body radiation she'll receive this week... that she is almost certain to get cataracts. BUT... he did say that was fixable. That she'll probably have to have cataract surgery in her 40s instead of like an elderly person. Ok... fixable... we can deal with that.

After we met with the doctor they took Alex back to do the planning session of the cranial radiation procedure... as well as the procedure itself. If you remember from last week, the machine was down and they were not able to do the full planning session. After the cranial procedure they needed to do a chest x-ray for the Total Body radiation... this was done for the lung plates they will make before that procedure takes place. They also did a practice run while she was in position. We could not go into these appointments with her and it seems she was really upset while she was in there. It broke my heart when she came back into the exam room and then broke into tears when she saw me. Uggg! Dan and I got her settled down and cheered up and decided to go to the rooftop cafeteria and have some lunch. We had to go to the oncology clinic after for the infusion so we thought we'd make the best out of our break. The cancer center is gorgeous! When they get all the inpatient rooms done it will be amazing!

We went to the oncology clinic at Primary and were put in a room to get started on the infusion of Immune Globulin. This is a blood product found in plasma. They did some premeds and gave us 30 minutes for those to get working. The nurse came in to hook up the IV of globulin and hooked Alex up to a blood pressure machine. The infusion was to last 3 hours... the infusion goes in stages... starts out very very slow... and then progresses as long as vitals are good. Alex and I were watching 30 Rock and laughing and Dan was doing homework. We were only about 20 minutes into the infusion when Alex says to me "Wow... they were right... this stuff does give you the chills." Her teeth started chattering so I pushed the doctor button. Within 10 seconds she was convulsing and she was looking really really bad. A team of 4 clinic personnel were in there stopping the infusion and ordering drugs to stop the effects of the globulin. It was very scary to watch. After they administered the drugs to help with the side effects we had to stay there and wait for a long time. It took Alex a while to settle down... she lost her entire lunch... and was just plain miserable. They took some blood labs while we waited to see if there were any other infections brewing. We'll see about those tomorrow I guess. The day was ruined and so were our plans for our night. It was really unfortunate since we only have these last 2 nights at home. Instead of our nice night at Alex's favorite Greek place, we stopped by Wendy's (something that always seems to stay down) and then came right home. (time 6:42pm)

Well, that was about it for the day. It was too exciting! Tomorrow she has to go in for another cranial appointment. It shouldn't last that long and we'll be able to come home. I do hope she is up for doing something tomorrow since it's her last night at home for a very long time. Tomorrow, in addition to the radiation appointment, I have to wash all of Alex's things that she wants to take with her to the hospital and put them all into ziplock bags and then into clean garbage bags for transport. I just hope our day goes as planned and Alex can enjoy part of it.

Thanks for tuning in everyone. I will update more tomorrow. Tonight I think it's time for a big glass of wine. Like maybe a BigGulp size?

Alex and Dan in happier moments today...

Alex's demon globulin product

This is the kind of sign you get on your door when you are positive for some sort of infection. We joked that Alex was leaking some sort of hazardous waste.

The view from the Huntsman Center

Alex in the Huntsman Center

The rooftop restaurant in the Huntsman Center... windows on 3 sides

The view from the Huntsman Center. The building just beyond the heli-pads is Primary Children's.

The lobby of the Huntsman Center