Thank you again to all who were a part of last night's event. We have heard from so many about how wonderful and amazing it was. Words cannot express our gratitude. What a special day it was for us. THANK YOU!!
Tyler and I were trading places last night so we brought the other children in to visit with Alice for a moment. She laughed more in that short time than she has in a very long time. It was so cute to see her so happy to be with her brothers and sisters. She was sad to see them leave, but it was okay because Mom was staying.
Honestly, I am amazed at how many times Alice has smiled at me in the past two days. It's there, it's in her eyes...she is happy and I think she is feeling like things are beginning to wrap up. I feel like I can't hug her enough. I love being in her presence, it is a very peaceful and lovely feeling.
I know as time passes and our journey through this time comes to a close we will miss many things about it. Everything we use and look at have memories of someone or something that helped us through. For example, I will never be able to drink a Kerns nectar drink again without thinking of my sweet Aunt and Uncle who have faithfully kept our little food supply here at the hospital stocked. We will never forget the help and love that we have received. I know we have a long road still, but at least it will be filled with constant reminders of many who have shared their love with us.
Tyler and I felt like our buckets were empty when we started this journey last September, but they are overflowing now with strength and courage. Truly, it's hard to express how we feel through words.
Alice is doing good, more of her medications have been switched to oral. Her little stomach is trying to adjust. Sometimes it's too much, but she will get there. She has developed a skin rash, which is common and could be related to the cyclosporine she is receiving. There is a possibility it is a sign of graft vs. host disease. This would be the acute form and shouldn't be much of an issue. Hopefully if it is GVHD it will be temporary and should resolve. The fact that she received unrelated marrow, GVHD is a possibility.
Her blood pressure has been slightly elevated, so they increased her blood pressure medicine. This is also normal...just needs to be closely watched. And her ANC was 1700 today. Staying high!!! We are so happy!