Appointments went well this week at the U.  There have been so many! Abby loves her new BMT doctor. 
Abby still has some blistering in her mouth when she tries to eat food, but she states it is improving. She has a lot of fear as she heals, the doctors say this is normal due to the severity of her pain. Like everything else, it will take time. 
She is still on a generous dose of morphine 2 times a day. She will be trying a new pain patch versus oral morphine; hopefully this will be better for her overall with less fogginess. Her esophagus still gives her much pain, but it is slowly progressing. 

She struggles with making decisions and gets overwhelmed easily. This is from the steroids and pain meds. This bothers her and has stripped her of her independence for now. She just wants to be a 25 year old that can go out and thrive doing what she loves. 

Lung PFT capacity tests look good!  Much improvement with no signs of pneumonia anymore. She does have scaring of lungs and chest wall possibly due to the radiation just before transplant. They call it mild restrictive disease.  Should not affect her much except maybe asthma effects. She has an as inhaler as needed for the times when she feels out of breathe. 

Her attitude is still good, we are grateful for that. She has fear of the cGVHD coming back and making the severe pain come back. As they slowly wean her from the steroids, this is a possibility. This is a critical, critical time  The taper off of steroids will be over next 8-10 weeks!
The hope is that as the doses of steroids decreases, the cGVHD stays slow and low. There is a chance that when it is lowered, it could rebound. This would not be good for Abby. 
Her eyes are becoming more stable. She has more extensive tests in another week at the U of Mn. They will do a bunch of tests to establish a new baseline. She will have to have drops for the rest of her life due to the cGVHD. 

Her other organs that are affected are being monitored. They are watching her carefully. 
We are still waiting on continued healing. 
She is still planning to make the trip out to Montana for a young adults cancer camp at the end of May. Her NEW BMT doctor is very supportive and they are going to make it happen. They have nurses and doctors at the camp. It will be a beautiful time for her to connect with others who have had cancer as well. 

We are all very tired and saddened by this process. It is overwhelming to see your child suffer day after day. Her positivity guides us to try to have a positive mindset. We can’t look back, we have to look forward. We are not perfect though, this is the hardest thing we have done on this whole journey… enough is enough. We need her to be healed… We are all physically, mentally, and spiritually exhausted, our family needs to catch a break. 
For prayer requests: read above.