Hi everyone!
Well... tons to report on since my last post. We are now all checked into the hospital and most things have been put away for the duration of Alex's stay. She still has some posters to hang but most things are in place and Alex feels she has a little piece of her room here at Primary's.
I spent most of Tuesday preparing for Alex's hospital stay. All of the clothing that she wanted to bring had to be freshly washed (even if it had already been washed and was hanging in her closet) and then dried and then immediately put into bags to bring to the hospital. This wasn't hard work, but it sure was time consuming. I ended up with 4 big garbage bags full of ziplock bags of clothes... and another bag of odds and ends.
Alex had her last dose of cranial radiation yesterday. My best friend Cindy came with us. It was great to have her with us for the day. We went to the Huntsman Center for the radiation appointment and then immediately to the hospital to get settled into her room... Her new port surgery was scheduled for 2:30 We had a few hours to decorate her room and make it more personal. I think it will go a long way in making Alex feel more at home.
I met with the surgeon and we discussed the new line placement. This was a surgeon that the BMT team recommended. He seemed nice enough. They took Alex back for surgery and Cindy and I went to grab a cup of coffee to wait it out. After about an hour the surgeon came into the waiting room to tell us that the procedure went fine. When Alex finally woke up from all the anesthesia she was in a lot of pain. The new port had to be placed on the other side of her chest so between taking the old port on on the left side... and the new port on the right side... both sides of her chest were killing her. This procedure SHOULD have been done right the first time... and even with needing it replaced, it should have been done weeks ago. It's just complete BS that she has to go into all this with the soreness of a new surgery on top of everything else. Crazy! A big "THANK YOU" to Cindy for spending the day with us. I know Alex really enjoyed your company. You were such a huge help!
This morning was Alex's first round of TBI (total body irradiation) Alex's nurse's assistant took us downstairs to a security van... they drove us up the hill to the Huntsman Center. I was able to go back with Alex to see the room where she would have the TBI. On the table were a set of lead blocks that they would be placing on Alex's chest. This was going to hurt. These lead blocks are shaped like lungs and they were made especially for Alex in the shape of her lungs. They did a series of x-rays to make sure the leads were put in the right place. Her first TBI took over an hour. The radiation itself takes about 30 minutes.
One fun thing that is going on at the hospital this week is a water problem. Apparently they found some chemical in the water that was not acceptable and ALL the kids have to go to this special "tub room" to take a bath. Alex has to bathe at least once a day right now so this was a special activity that we got to do today. I hope they get this problem fixed by Sunday when she starts the one type of chemo where she has to take 3 baths a day. Uggg! Please send good water vibes now :o)
Alex's dad is flying in today. I can't tell you all how happy I am that he'll be here helping me with all this.
Calling out a very special "HAPPY BIRTHDAY to my bestest Kansas friend Debbie!!! I love you! You are such a great friend!
For all the special people in my life that have sent Alex such amazing things... She wishes she could thank all of you personally. She was doing so good at getting "thank you" notes written and sent out... but is just not feeling up to it lately. Please know how much we both appreciate all you do! I do have to call out a HUGE "thank you" to a special woman, Linda, that reads the blog... and to whomever helps her with her generous donations to many... Thank you to the group of people who sent Alex the big collection of goodies for Alex. She was thrilled to see the box set of the Sopranos! She is so excited to watch it while we are here. And all the other supplies will go far in helping me with this process. Thank you SO much Linda and all her little elves.
And for all the local readers of the blog.... Please try to remember the blood drive that is this Saturday (December 18th from 10am to 2pm). I will try my hardest to make it, but am not sure at this point with where Alex is in her treatment. Thank you so much to all that can make it and donate. I will really try to be there. It's a great thing to do this holiday season!
Everything all ready to be packed up
Some sealed Christmas ornaments for Alex to hang in her room
Alex's cranial radiation mask. The gray tabs are inserted into the table to keep her head in perfect position.
Alex and Cindy hanging up posters
Alex's room decor
The stick-on tree that my cousin Rian gave Alex... it's adorable and hanging on her bathroom door.
The cute tree that I got for Alex's room
The view from Alex's window... not bad
Room decor... My bestest buddies in Kansas made the cut for room decor. I don't even have MY photo in her room :D Deb and Rich do a take on American Gothic.
Alex's chest X-Rays for the TBI (total body irradiation)
This is the strange contraption that Alex has to sit on for the total body treatment. She has to sit here for 30 minutes.
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