Imperfect

I posted today on facebook that I need everyone to know how impatient I am. How angry I get, how I am unfaithful in trusting Him, how I am not always positive, and how I lose my mind with impatience at times. All of the wonderful and supportive comments I get about my strength, patience and how I handle certain things is motivating and does lift me up, but I need to keep it real and make sure you all know that I am not all of those things all of the time (not even half of the time!). Really. Ask the kids, or Walter, or my poor sister who gets my crazy calls some days. I am so imperfect in how I am handling myself. I can be such a mess, actually.

Yesterday was a looooonnnnngggg day at the hospital. Liz and I were there from 10:30-5:00. Her IV fluids took forever to run and then we had a terribly long wait at the Hematology/Oncology office.
I am happy Liz got fluids yesterday as she was indeed dehydrated (as labs showed) and she came down with the cold Kate and Jackson have had, so she feels pretty crummy. I was also happy that we were able to go directly to "Day Care" (the area of the hospital where patients going through chemo, transfusions, infusions, IVIg, etc. receive treatment), so we avoided having to go to the ER and having her exposed to all the germs floating around that petri dish of an area. Also, the Day Care nurses know her well, so she is comfortable there. They also are the best at starting iv's and she has a room to herself, so it is an easier experience all around for us.
I had a good talk with the hem/onc doctor and she sincerely let me know that she understands my frustrations. In fact, as she left the room, she came back to tell me that she gets upset when there are cases that, like a puzzle, take longer to put together. So much to be said as to what was discussed, but basically, she let me know that they think Elizabeth may have something developing. They have talked about this diagnosis before as a possibility, but as I was told again yesterday, it can take months to years to develop. Elizabeth's bone marrow is abnormal, we know that, but there are certain markers in the marrow that give this definitive diagnosis, and so far, Liz's marrow hasn't presented those specific markers. The abnormalities her marrow does show, along with her abnormal cell counts point to the strong possibility that she is developing Myleodysplastic Syndrome (specifically, if this is the case, she would most likely have the RCMD category). Of course, my first question was if we could just go ahead and start treatment for this, but the answer is no. They need a definitive diagnosis and because there are different categories of MDS, we'd need to know which one she has because treatment varies. Fabulous.
Since she just had her last bone marrow aspiration in December, they are recommending we wait until May to repeat it. That seems so long to wait. We put men on the moon for crap's sake, I want it checked and ruled-out, now! The doctor reminded me that MDS can take months to years to "develop", so we need to give time in between BMA's, and also, if her marrow is going to recover, we want to give that time to happen too. After three BMA's that have shown marrow that hasn't recovered, this hopeful thinking is hard to cling to.

So, Hem/Onc is recommending we continue IVIG until April, then take 2 months off (her other docs agree with this). Testing having to do with white cells and immunology will then be done (testing that can't be done while on IVIg). Then, in May she'll have another bone marrow aspiration.
For the immediate, she'll keep up with the transfusions, start inhaled antibiotics (to prevent infections), have a pulmonary function test (because her lungs don't expand they way they would like them to) and her liver studies repeated next week (if her liver numbers are still off, then I will run away. That'll be the straw, I am telling you now). Our primary focus right now is to keep her from getting infections, and for goodness sake, to get her to gain some weight. It is crucial she not lose anymore weight.

I wish I had something profound or witty to write about tonight, but I just don't.
Working on being patient, positive and not letting my frustration get the best of me....I have a lot of work to do in those areas!

It's a good thing that in the midst of all of this, we have happiness all around....

like this little man. He is growing so tall and big, and even a bit naughty... and his sweet smile lights up a room; Jackson lights up our family.







And my Kate. How fun to be part of a team! This is their pre-game huddle and cheer......
followed by her first time serving during a tournament. Only 5 girls have served during games, and you should have seen Kate's frantic expression when the coach told her she was serving. Eeekkk! Her teammates were awesome as they immediately started cheering her on. Over the net, 3 points scored off her serves, and her first time out of the way. Phew! Have I mentioned for the 100th time how happy I am for my girl to have this sport-this team- to call all her own right now?