Saturday, January 16, 2016
It was nice to be able to do it at home but it was a bit stressful too. I just kept wondering if I was doing it ok or not. I didn't want to mess up for sure. Lots of pressure on those cheek swabs. I almost dropped one of Annas but caught it mid-flight before it hit the ground. I had 4 swabs for each of us so it would've been ok but still, a bit stressful.
The 2nd MRD (minimum residual disease) test will be sometime this week. It was suppose to be on Monday but since she has no white blood cells to test they will need to move it to later in the week. We should have the MRD result and our bone marrow match test results soon too. At that point, they will be able to make some decisions on what the rest of the winter and spring will look like for Abby.
We do hope that one of us is a match and that her MRD is a lot better than last time.
On the hospital front, Abby is doing better. Still on some pain meds but she can go for longer in between the doses now. She's also eating again, at least a couple meals today. I'd say she is 50% better and we just hope things keep moving in the right direction.
Friday, January 15, 2016
So, Abby's having a hard day but better than yesterday. Without going into too much detail, Using the bathroom is very painful. She was on morphine yesterday and has a standing order for it if she needs it. They almost gave it to her again today but the oral pain med finally kicked in. They think it is probably sores, like a canker sore, in various places down her digestive system. Just part of how chemo works, targets rapid dividing cells, and can be indiscriminate.
It's so hard to not be able to take the pain away. But she's in good hands here.and I'm glad they have pain meds that help her tolerate the pain. Once her blood counts get better her body will be able to start to heal again. Hoping and praying that that time is soon. Her ANC is still at 10 so she has a ways to go.
Thanks for reading, for all the Facebook comments, texts and for everything else you all are doing to help our family through these trials.
Thursday, January 14, 2016
I should be an early warning system. I knew she was having a rough go today and by 2pm she was in the car to the hospital.
She was in lots of abdominal pain and had a fever. They put her on morphine. She just had an X-ray and it looked ok.
Please pray that she sleeps well. And gets better soon. These types of nights are tough ones indeed.
It's really not fair to you all reading this, we either post when things are hard or we don't post at all. I guess the fact that we hadn't posted much lately was a good sign. But I'm sure we'll be posting more soon as things are getting pretty tough right now.
Abby is still home and that's been nice. Actually last week, though we drove dailiy to the clinic, 1.5 hours each way, wasn't as bad as we thought. Abby tolerated the medicine pretty well and we enjoyed having here home in the evenings. It takes about a week for the medicine to fully work: drop your blood counts, give mouth sores, digestive issues, and kill the bad cancer cells too. So, that's where she is now, at the bottom.
It's a tough place, the bottom. It's tough on her physical of course but emotionally too. She cries a lot about her sore everything and just wants it to go away. I just want to take it all away. But standing by her bed, rubbing her back is about all I can do for her right now. I want to take it away but I can't.
As a parent, this is one of the hardest tensions that I've ever encountered in life. What do you say to your crying little princess with cancer in a time like this? The answer is, 'nothing'. You say nothing and instead you cry with her. You rub her back and wipe her tears. You run your fingers through what's left of her hair and you pray words for her that she can't pray for herself.
At the beginning of this I wrote an email to some of our friends in Colorado. I said that this is the hardest thing we every had to do, twice. That's true. But, as my friend reminded me the other day, I often also say that I'm, 'just taking it one day at a time.' I think that is God's grace in this week too.
So, through the joy, the pain, the good days and bad, I'm just going to continue to fight for myself, my family, and especially Abby to just take it one day at a time.