Blue

I'm living a yo-yo life, it seems. An uncertain, unknown, unplanned life. And you know what, I am having to learn that some things are the way they are and words just can't explain....but I am kicking and screaming inside during this life lesson.

Today we had an appointment with the Immunologist/Pulmonologist/ Fix-my-kid-please-ologist. A huge praise to report is that Elizabeth does not have full blown, active CGD. I am so, so thankful for this and seriously let out a sigh when the doctor shared this. He does believe she is a carrier and so when she decides to have children, she will need to go through genetics testing and counseling. That is a bridge Liz will have to cross when she gets there. For now- joy, joy, joy!

We talked about how she has been since her IVIG treatment two weeks ago and he reiterated how it will take time for her body to adjust to the infusions and for treatment to work the best it can for her. He also said that her headaches and fevers are probably from the IVIG. We will move her treatments closer together (ugh!) after her next two are done. We'll have an idea of the effect it may be having on her after her blood is tested on the 13th, right before her next infusion is administered.

Dr. Brilliant had spoken with Liz's Hem/Onc doctor (one of the greatest men in the world!) and they are concerned about her bone marrow. I have said how her last bone marrow aspiration shows that her marrow is still hypocellular. This last marrow sample also shows that her B cells are abnormal... which is not good. There is no malignancy, which is "odd" (umm, more like a huge gift, I felt like saying!!), but her B cells are defected; they are failing to mature or reproduce properly. B cells are lymphocytes that play a huge role in a body's antibodies/immune responses, so the findings go right along with her other lab work and her symptoms. Now the docs need to find out why her Bcells are like this. We will see her Hem/Onc doctor tomorrow morning to talk more and to discuss additional therapies. Kaitlin also has an appointment at the same office tomorrow to check her counts because of how low they all were last week. Please pray with us that those labs were simply in reaction to a virus, and not indicative of anything Liz is going through. I am certain she is fine.

Liz has lost weight this past month which was discouraging. Dr. Brilliant was also little concerned with her ability to open up her lungs, so has advised us to start moving her more. More? She runs around like a crazy person, playing with her brother and sister, but alright, we will do more.


As I write, I have a sick Elizabeth in my bed. She has a cough and congestion and her chest hurts. Add in her tummy pain and she is kind of a mess. If I am honest, I will admit that I feel a bit of anger. Though I stroke her head and try to soothe her, I do so with a mindset of complete fatigue and (ugh!) admittedly, a teeny bit of annoyance. I am so tired of sick I could just scream. Really, I could. That sounds awful, but it is the truth. I literally have to pause and remind myself that if we weren't in this situation, I know I wouldn't feel so...ambivalent at times. I remember a friend who had a sick child telling me how she felt ambivalent sometimes about her child feeling sick. I could not understand, no matter how hard I tried, how a mother could say that. I didn't judge her because I wasn't in her position and I was certain she meant another word than she had chosen to describe her feeling - or not feeling. Now I know she knew exactly the word she was using. If you know me, you know that I am so very caring and compassionate with my Liz. I have held her as she retches, rubbed her back, massaged her body, bathed her, spoon fed her, sung her to sleep, encouraged her, held her hand, watched over her, counted her breaths, and rocked her in my arms more times than many mothers have a chance to (which in itself is actually a blessing). I have done all of those things and more. And yet, even a mother can grow tired and weary, and long for normalcy.

I don't know much, but I do know that I see things differently now than I did before.