Monday, February 06, 2017
Bone Marrow Test, New IV, and possible GVHD
I went down to the hospital today to see Abby. I was finally 24 hours symptom free so the girls and I headed down this morning. They did school in the car, as much as they could, and we were able to get there before Abby's bone marrow procedure. It was good to see Abby and give Mark a little break. Anna got to come into her room and that was sweet. They did a puzzle together and played some GoFish. Abby had a rough night and so she was tired and more emotional today. Her IV was hurting last night so they turned off her fluids at about 1 AM. Since the IV was causing so much pain, they kept it off but she then had to drink water for the next hour and a half to get in her needed amount before she could go back to bed. Today was the bone marrow test which involves putting her under anesthesia. They do that through the IV and it was still causing her pain this morning so they had to put in another one. Poor kid. They did it in the procedure room, which is like a mini operating room in the clinic, so the anesthesiologist was able to give her some laughing gas to calm her down. The placement went great but the anesthesia itself burned a lot going in. She has to have the IV in her hand because she can't straighten her arms all the way and hand veins are smaller and more sensitive. But, once asleep the procedure was easy and quick and she took a needed small nap in recovery. They did preliminary tests on the marrow for cancer cells and didn't see any-YEAH! They send the sample to Seattle where they do a more in-depth test that we will hear results on in 5 days. They also tested the bone marrow for some other things and all is well there. The hard news of today came when they discovered Abby's elbows actually can't straighten because of scar tissue. They thought that when she was asleep in the procedure room they would try to straighten them to check but couldn't get the to straighten out. This could mean she has graft versus host disease in her muscles. It's pretty rare for that to be the reason, but since there is a chance of it they want to try to figure that out. If they don't treat it and it's there, her muscles will continue to be attacked by her own body. If the muscle damage and scar tissue are just from a bad allergic/auto-immune response from medications, then the same treatment will take care of that too since it involves steroids. So.... they'll do an MRI this week to pinpoint the most inflamed muscles and then biopsy those areas as well as her liver. The biopsies aren't crystal clear on if it's GVHD or not, but they will give them something more definitive to go on in making the decision for treatment. We also need to decide on having them put in a PICC line (I had to look up how to spell that-I don't know what it stands for) or another Broviac port. If she has GVHD, she will need a Broviac for the months to come. So we can have the PICC put in but it's only a bridge until we find out if she needs a Broviac. Tonight, we're just glad we got through the day and she got to see Anna and we can think about PICCs and Broviacs tomorrow. Goodnight all.