Yesterday was a really hard day for Naomi. When she was not in a lot of pain, she was miserable about the idea that she cannot eat or drink anything. She is on a formula administered through her IV, so she is getting nutrients. But the mental stress put on her about an empty stomach was almost too much to watch. It was a further trying day because she wanted so badly for all this to be over. She talked about going home “for even just an hour,” missing the feeling of being inside a car, and she had a major breakdown because “they said it was so important for me to go outside each day but now they will not let me do that!” It was hard to keep it together and I will admit that I hardly did.

She is on pain medicine but went quite a long span between doses yesterday. This morning when the drs did rounds they emphasized how much they want her active and walking. They put a rocking chair in the room for her, too. The more she moves, the faster she will heal and the sooner she can drink water. As far as blood counts, that is sort of secondary right now. Her counts are holding pretty steady and for that we are thankful. She has not needed a transfusion in a few days now. I continue to advocate for less blood draws but they have to do troughs on antibiotic levels and they have to do the daily draw. So I did confirm with the hematologist today that blood will only be drawn once per day and the trough with that.

Sadly, her neutrophil count is still at zero, but the dr said that considering how well she looks physically and clinically, she must be making cells but they are not in the blood because they are in the tissues. She explained that when there are so few cells in the body because of AA, they are all being used pretty quickly since WBCs only have a life of about 8 hours. It was also explained to us that her digestive system issue is an extension of her AA. Typhlitis only occurs after a person has been neutropenic for an extended time. With a life of eight hours for WBCs, a few weeks is an extended amount of time.

So, in summary, she is doing as well as could be expected, actually even better than expected. She did not bleed from her surgery. She did not need a WBC transfusion. She was never placed in ICU after surgery and went right into IMC where she remains until likely tomorrow. She seems to be healing well and has been walking today and in the rocking chair at times, too. She is complaining far less today about water and food. She loves coloring and doing crafts and playing on my iPad. I miss my iPad and honestly her playing on it was why I did not update yesterday. It was the only thing that kept her from crying.

We finally got dr’s orders to go have the other children tested to see if they are bone marrow donor matches. It is a blood test performed at a local diagnostic center and then the results could take up to two weeks to come back. We do not know at this time if a bone marrow transplant will be required for Naomi, but the process to find a donor takes so long that we are proceeding, to be safe. It was the hematologist’s opinion today that she is responding to the ATG and cyclosporine and Neupogen protocol at some level because she is doing as well as she is post-surgery.

I got special permission to bring the entire family in at the same time for family time. Typically, the policy is only children 14 and over and no more than 4 in the room. But we were able to get permission for the other children to visit. I am sure those visits will be a welcome change and add some fun into her day. Niamh spent a few hours with us last week one day. We all played in the playroom together and Naomi and Niamh even sat in the bed together and played with play dough and on the iPad. I really should have gotten a photo of that!