She is looking forward to possibly hearing better and in the near future being able to swim without worrying about getting water in her ears.
I was overly nervous for this simple procedure, due to being under more stress lately...I was relieved that it went so well.
I have been meaning to post Alice's bone marrow biopsy results for sometime now, however, I needed to take a little time to sort it all out and accept it before I felt like I wanted to talk about it...thus the added stress lately.
When the doctors delivered the news to Tyler and I we were devastated, I was at home on speaker phone, while Tyler was with Alice in her room conversing with the doctors. I kept wanting to say 'what?' like maybe I heard them wrong...but as terrible as the connection was it was in fact true and hard news to hear.
Alice's bone marrow has less than 10% cellular density and no longer is producing any cell lines to sustain her. She is entirely dependent on transfusions of red cells, platelets and antibodies. Her white infection fighting cells are almost non-existent. Unfortunately infection fighting cells can not be donated.
Alice is hanging on to her graft by a thread. There is a small chance that somehow it can revive itself, this is our hope....of course we are going to hang on to any glimmer of hope and continue to seek answers to improve her situation.
Currently the plan is to adjust (let up a little) her anti suppressant medications enough to provide all opportunities for her marrow to thrive without provoking added graft vs. host disease. The entire process is incredibly delicate and has been from the beginning. We understand and know that Alice's life in its entirety has been a miracle.
The past couple days have been overly challenging for Tyler and I as we have each experienced moments of emotional weakness and exhaustion. We are struggling to find something solid to grasp as we look for options and solutions. The doctors are going forward with the matching process once again in the event that Alice needs transplant again. The risks of a second transplant at this time are much greater than before. She is very fragile, the doctors have expressed great concern in Alice's behalf.
Initially when this unfavorable news came to us I felt so discouraged and upset, I struggled to focus my thoughts, I cleaned the entire house, sorted through toys, organized clothes, etc. I had to do something to pass the time as I was fighting the anxiety associated with this situation.
Recently, I was feeling overwhelmed and extra emotional, I went down to the cafeteria once Alice fell asleep. I was past hungry but needed the nutrition. I was just sitting to eat when I saw an employee hospital friend passing by on break...whom I have not seen in several months. It was a sweet tender mercy for me as this inspired person said all the right things I needed to hear at that moment. I cried more than I ate...:) But of course felt much better afterward. A good cry can be so therapeutic.
The peace that comes as we remember the Lord's hand in our life continues to remind us that He is indeed in charge and will take great care of His sweet Alice.
|So Cute...the bottle is her comfort.|
|Our most favorite game...passing time as we fast. Love this girl!|