Butterfly

Elizabeth loves butterflies! She says they are special to her and will tell you how they are good luck for her. She'll also tell you how during a hospitalization last year and the year before, two butterflies would visit her 2nd story window; dancing for her. I am never able to look at a butterfly without thinking of my Elizabeth. The song you hear now is one I have sung to the girls.

I have said that I am using this blog, more than anything, as a journal for me. I am not good at keeping a journal and I have had others say that journaling on the computer is easier than writing in a book. So, since this blog will serve as a record, I am going to do an update on Elizabeth's health. I am terrible at recording things in regards to her health. I loose track of surgery dates - even years!- and I forget illnesses and major procedures. I am organized and manage her care and have a binder full of records and reports, and now a calendar for charting fevers. But, I admit that I don't keep track of it all. My mom and others have suggested I write down everything. I just can't do that. I think, every time, that we will be past this. That each procedure or surgery will be the last and so why should I track it. Nine years into this, it sounds silly, but I really think it will just all go away. I refuse to let Elizabeth ever think of herself as the "sick" kid in our family or amongst her peers. I won't let it define her.

Anyway, in an effort to record, this is the update:
Dr. Simon (Hem/Onc) has explained to us that Liz's bone marrow is hypocellular. Whereas it should be 90% cellular, hers is only 15%. She will have another bone marrow aspiration in March to see if her marrow has recovered, stayed the same, or gotten worse. In the mean time, we'll wacth her recurring fevers and her white count and platelets (we're watching all blood counts, but those are the two that have been so low intermittently).
There was talk among the doctors and the Infectious Diseases doc that she may have caught a virus last January, right at the time of her last surgery, and it just knocked out her system a bit. That her counts stayed low because she kept getting sick, but she was getting sick because her counts were low. A cycle. I don't think the doctors think that is the case anymore.
I have been having to give her her anti nausea med. more than usual for the last two months. She's also been complaining of abdominal pain and she hasn't been eating well. Her GI doctor has put her on a new medication and is watching that closely. We learned two weeks ago that her liver is mildly enlarged. Her liver labs look good though, so we'll follow up on that at the end of the month.
She has only gained 4 pounds in the past year and a half and is only in the 25% for weight, so we'll be meeting with a dietitian again next month.
Nine years, 6 surgeries and too many procedures and hospitalizations to keep track of, I can't believe she is still dealing with all of this. I can't believe that we may be dealing with a new diagnosis. I can't believe any of it.
And still, what can we do but just go with it and take it as it comes, knowing that each time it may be the last time we'll have to deal with any of it.

There are no words to use to tell you how brave Elizabeth is. Can you imagine going through all of this in such a little life's time? When I sing this song to her, sometimes the words take my breath away. "Don't you worry, hold on tight, I promise you that there will come a day." She has no idea of the meaning of those words to me, of course. She has no idea that when I sing the words to her I am, inside, pleading with her to be patient and I promise that one day she won't have to go through all of this or feel sick. She only knows what I tell her... that she is amazing, my butterfly.

Caterpillar in the tree
How you wonder who'll you'll be
Can't go far but you can always dream
Wish you may and wish you might
Don't you worry hold on tight
I promise you that there will come a day
Butterfly fly away