Friday, March 25, 2016

CT scans, lung tests, finger pokes and an ER trip

So I'm sitting in an exam room waiting for Abby to come back from her lung tests. She gets to sit in a glass box and breathe a lot into devices. Later today we have A meeting with the dietitian to go over what she can and can't eat during transplant. Then we have a palliative care meeting. And then she meets her child life specialist who helps her process two different procedures before and after they happen. She's doing really well and feeling pretty good considering our week started pretty roughly with lots of nausea after Monday's chemo. We had to go down to the ER at Children's on Tuesday afternoon because she was vomiting blood. They did lots of checking and it was nothing serious, probably just some tears in her esophogus from all the vomiting. She's been doing fine since. She and Mark got stuck in Denver Wednesday because of a surprise blizzard that hit early Wednesday morning. They drove down in it and it took about three hours to get to the hospital for Abby's appointments. When they were all done with the appointments parts of I-25 had been shut down and there were no hotel rooms left so thankfully, Mark was able to stay with a friend's parents who live close by. They took great care of Mark and Abby and we were so thankful! Yesterday we did a lot of CT scans and nuclear medicine blood tests. We had a long neuropsychology appointment as well.  This week is about checking  all of her major organ functioning and everything looks great so far. 

Anna and I came down yesterday as well so that she could have some blood tested and some blood drawn to save and give back to her after the procedure. She also met with a child life specialist to talk about what to expect. She had a history and physical exam also. She was a trooper. She was all geared up for the blood draw and was holding it together pretty well until they came in and said they were going to do a quick finger poke before the needle stick. At that point the tears started flowing and all the nurses were surprised because a finger poke doesn't seem like a big deal. However, Abby has mentioned before how difficult finger pricks can be because they have to squeeze and squeeze to get enough blood out for test. At that point the nurses started talking about how it was a new device and didn't hurt at all and started pricking each other's fingers so that Anna would calm down. She got through it eventually and was able to order some French toast and enjoy that before she went to her next meeting. The other two appointments were just for information and an exam. Although we tried to reassure her there were no more pokes, Anna was skeptical- especially when they started trying to get to know her and ask her about the stuffed animals she had brought. I think she's starting to realize that when they try to get to know you they may eventually poke you with something. Overall a character building day for her right? That's what we tried to remind ourselves when we were collapsed on the couch from emotional and physical exhaustion later that night. 

We have the weekend off and then we do another week of appointments. Thursday Abby will have surgery to get another port put in. Enjoy your Easter weekend. We hope to just enjoy some family downtime, cook a ham, do some Easter egg hunting, and hopefully connect with with the holiday means. 

Thursday, March 24, 2016

And the donor is.....

Anna! We've had a full week. I'm sitting here with Abby in radiology right now about to go for another scan but I wanted to let you all know. She is with Mark right now going through her donor appointments.

Monday, March 21, 2016

Day 1 of Work-up Week

Abby and I headed down to Denver at 7:30 this morning after our usual stop at Starbucks for a coffee for me and a cheese danish to tuck away for later for her (she can't eat until after her spinal taps and bone marrow biopsies).  She did average for nausea on the drive down.  It's been a great past week of no nausea and no anti-nausea medicine.  She hasn't been sleeping very well but having her feel better during the day than she has to date is a huge blessing.  We got there a little early so they loved us...until I told them I had let her have almond milk to take her morning meds.  We had to move her procedure an hour and a half down the road.  I felt so bad.  She had to wait until after her (now)1:00 procedure to eat.  She did pretty well.  They had her going on fluids through an IV all day to help.  During our wait, she had about 30 blood tests done.  They didn't need to take all her blood for that but  it looked pretty close.  The counter was lined up with test tubes.  These BMT folks are very thorough.  In one of those tubes was the test to see if Abby really does have lasting antibodies for the CMV virus so that we will know if Anna or Lily will be the donor.  We should know Wednesday morning, maybe afternoon.  Whoever it is goes down Thursday for their orientation and a one more blood draw.   They will also take some of the donor's blood and save it to give back to them after the procedure.  The transplant is scheduled still for the 13th of April.  The rest of the morning was spent going over the schedule for the next three weeks with the bone marrow transplant coordinator and meeting with Dr. Craddock (our bone marrow transplant doctor) for a quick exam and to ask questions we have.  Abby's procedure went well.  She was able to get about an hour of sleep which was good because she hasn't slept well that past few nights.  Our recovery nurse was very sweet and took very good care of Abby.  She got two warm blankets and extra time to sleep.  So....we are home now.  Abby is resting in her bed.  Her back is sore but her nausea is under control.  We can anticipate high fevers from the chemo she got but were asked to give her tylenol round the clock to help keep them at bay.  Yes, round the clock means we have to get up every four hours for the next two nights to wake her up to take a tylenol but it will hopefully keep her out of the ER with those high fevers.  We have a few other things to take care of before we back Wednesday.  I couldn't help taking a picture of the supplies we brought home.  I'll leave you guessing what it's all for.  The espresso maker in the background is definitely going to get used in the coming days!