Watch and wait

Doesn't my Lulu (my name for her) look so pretty? I took this picture as a cell message for Holly, while at the doctor's office today, The girls wore their "Holly bracelets" (she made us the cutest bracelets) and I wanted to show her. Anyway, because it was taken at the office and because she looks good today, I thought I'd share with all of you. Also, I thought I'd share the song you hear playing with you that a friend (ok, it was Holly who shared that too. Holly, Holly, Holly : ) ) had me listen to. It gave me chills as I listened to the words yesterday and thought of my baby blue-eyed, curly-cued, contagious-smile, little girl who I will hold safe in my arms as we go through this "storm".

The following is what was discussed today at Elizabeth's appointment:
First, most of you already know that the marrow showed NO malignancy. I feel like we've been given a huge gift with this. I am relieved and thankful!! Please know how grateful I feel to not have to face a diagnosis of cancer. My goodness, words just cannot express how grateful I am for that.
After the wish we had for no malignancy, we wished for the report to show that her marrow had recovered in a way, that her marrow be more cellular (remember, her marrow was only 20% cellular at the time of last bone marrow aspiration). The latest report from last week's aspiration shows that her marrow has not "recovered" and in fact may be even less cellular now. Not what we were hoping for!
I could go into other things that were worth noting, but it is a mess of technical terms and would be complicated to try to explain.

I can tell you what the "plan" is.... WAITING. Grrr. I am tired of waiting. Watch and wait, watch and wait. For a freaking year we have watched her and waited. What are we waiting for?! I actually asked the doctor this, in a tone of mommy-exasperation. I told him that of course I care about reports and numbers, but what I care more about and worry about is watching my child change physically. I really did tell him this! I told him that I don't need him or the hospital to tell me that my kid is tired and pale and getting fevers and petechiae. I KNOW, Lord do I know, that there are so many sick, sick children being cared for in that office, but I want a freaking answer about MY baby. I want a plan; I need a plan. On the flip side, I understand that they have tested and tested her for so many things to explain her low white counts, platelets and ANC. I also understand that if they rush and try to treat the marrow (increase it's cellularity) it could do more harm and it carries it's own risks. I asked the doctor to sum it up in a sentence I could use for Liz and he said this- her cells and marrow are functioning. They are just not functioning as well as they should be. He says he has had a few kids like this during his career.
There has been talk that she has something "brewing"...for that we'll just have to wait and see. Still, waiting and watching is getting old. This whole damn process is old and I want out!!!

Elizabeth will go back for counts in 3 weeks. Her platelets had dropped even lower today than they were last week. It concerns me that she is starting the cycle she's been on for the past year.... counts (by counts I mean her white cells, neutrophils and platelets. White cells and neutrophils fight infection and platelets are what helps our blood clot)are low, lower, then they rise and stay normal for a while, then fall back down again. Over the past month she has started the cycle of falling again.

So, she'll go back for counts in 3 weeks. She will have additional bone marrow aspirations done, probably in a few months and then months after that. We'll track her fevers, blah, blah, blah.
The doctor was worried about her weight. He asked is she is retaining nutrients...um, good freaking question. I felt like saying "does she look like she is?!" This issue was already talked about with her gastroenterologist last week after the procedure he did that showed her para-esophageal hernia. She will have some labs done to see if her body is taking in what it should. We'll meet with the dietitian Liz has seen before to work on helping her gain weight. 10 months ago the dietitian gave her a goal of weighing 60 lbs within a certain time frame. That SO did not happen!
As for surgery, I will talk with the surgeon next week. I will not have the surgery done any time soon unless her stomach is at risk of being strangulated. It sounds awful to say, but I won't allow the surgery until the risk and recovery of it outweigh the pain and discomfort she has now. Plus, I want her platelets better before surgery.

Blah! This all seems overwhelming when I write it out. It is, actually.

Thank you, thank you for all of the support you sent our way this week. I am touched by all of you who care so much about my Elizabeth; about our family. I wish I had perfect news to share about the marrow results, but I am rejoicing in the fact that no increased blasts/no malignancy was found in her marrow. For now I will cling to that positivity and we will watch and wait.