Abby got home Thursday afternoon. She's doing pretty well. She's on a high-dose steroid pulse which makes her really emotional. Her mucositis is healed so that is a great thing. She enjoyed painting some calendar pictures while she was in the hospital and I thought you all would enjoy seeing February's page. We are refreshing and getting some much-needed family time before she goes in for a couple of weeks on Tuesday.
Wednesday, February 03, 2016
Abby is doing the inpatient thing for a few days as she starts the 3rd block of her treatment. She checked in (no bellhop here!) Tuesday morning early (she and Mark drove to Denver through 14" of snow) and had her bone marrow biopsy and some spinal chemo and is now comfortable in her room getting more chemo and the high-dose steroid we like to call "the grumpy pill". Teenage hormones and steroids are not a good combo. This week's chemo gives her irritated eyes so they are giving her eyedrops every 4 hours to help. She may develop an infection in her eyes also and this chemo can give high fevers in addition to the nausea that comes with most chemo. So far, she doesn't have a fever. If that continues, she can come home Thursday late afternoon. If she does get a fever, they will do a blood culture and keep her 24hours after the blood culture stays negative. Her GI mucositis is just about healed up and the chemo she will get in a couple of weeks that caused it last time is a lower dose so hopefully she won't run into that problem again. So....that's the medical details. It's always hard to know how much you all want to hear on that front. The long list of procedures, medicines, and side effects gives you an idea of how she's doing but it doesn't give the full picture, of course. Abby is a trooper. The hospital stays are challenging because the sleep isn't great, the food is so-so, and she feels crumby most of the time. She loves being home, hanging out in her room, reading, playing with legos and her sisters on Minecraft. But we have enjoyed several chunks of time at home with her and we are so thankful. This month involves a lot of hospital time, most likely, but we are hopefully that there will be a couple of long weekends to enjoy as a family. My mom is here helping out which is a huge blessing. She is amazing! We are so grateful to my folks for doing this. She is planning on staying off and on through the bone marrow transplant. On that note, we have the consultation probably next week when we are in the hospital again for a repeat of this week's chemo. We will get lots of information from our new bone marrow doctor, get to ask all our questions, and Abby will get a full exam. Then, as we understand it, once block 3 is over, we wait for her counts to come up to a certain point and then we start doing scans and tests to check out how her whole body is doing, looking for any possible infection before the bone marrow transplant goes forward. You can join us in praying for all that this month has in store and for Abby's heart as she processes all of it. She is weary, we all are. We need wisdom on how to help her walk through this. We need strength to care for her, comfort and support her and each other. Thank you so much for your prayers and support.
Sunday, January 31, 2016
It was a fun party, and unique too. We had everyone wear hats since Abby now has no hair -she's still a bit shy about that. So, to make her feel comfortable, they all wore hats. Great friends. We had lots of sanitizer and masks on hand to keep the germs at bay as well. It's not exactly the party that we'd all want, but we have to adapt and so we try to have fun with it.
Overall, Abby has had a good week since she came home. The pain quickly subsided, her ANC is moving higher and once she hits 500 for her ANC (immunity count), they will start the 3rd block of Chemo. That will probably be on Tuesday and will start with a bone marrow test, 5 days of Dexamethasone (the grumpy pill), some chemo in various forms (including the dreaded leg shots) and an in-patient hospitalization. Hopefully this will be a short time in, maybe a couple, or 3, days.
Then some clinic visits to make, a Bone Marrow Transplant team meeting on Friday, some more clinic time and then a long hospitalization for what might be the remainder of the month. Hopefully this will be less intense than the last hospitalization but I won't be holding my breath.
Regardless of what is to come, this little relaxing week at home really was a super nice little calm before it get going again. It was a great, and much needed, break. I took some bike rides, Tiffany and I saw a movie, we had some time with friends and some fun nights as a family too. Still not the same, but I'll take it.
So, here we go again. Probably starting block 3 Tuesday so we better make tomorrow count.