Tired

Sleeping Beauty after IV Benadryl kicked in. I think she should have shared with the rest of the room...some for Liz, some for mommy. As it turns out, her nap only helped to energize her for the hour and a half-straight whine fest that followed. The sweet, exhausted girl is tired.....physically and emotionally.


I am so, so tired. Have I written that a hundred times before? I'm exhausted. If there is a word past exhausted, I am that too.
It is a good thing we are in a cycle (of insanity!) because my body is only running on auto-pilot and I am just going through the motions of the cycle. Doctor's office, hospital, radiology, lab, Infusion Center, repeat. Thankfully, life goes on and there are normal things thrown in too. School, volleyball for Kate, errands. Sometimes a play date or meeting or visit with a friend will sneak in and snap me out of the cycle, but for the most part I have become a hamster on a wheel. 'Round and 'round I go.
On Monday, I helped Liz get to the bathroom with her IV pole while at her treatment. I started washing my hands and instantly, I felt like I was going to throw up. The smell of the hospital soap has been a scent that triggers memories and emotion, and out of the blue, the very smell of it can make me sick. I slowed my breathing so that I wouldn't get sick, and then held my breath until Liz was done washing her hands.
How did we get here? Why are we still here?!

Monday was our long, six hour day at the hospital for Liz's treatment. There was a bit of an issue with the orders and the nurse had difficulty starting Liz's iv, so we didn't begin treatment until two hours later than scheduled, which meant we were in the Infusion Center from 9:00am-5:00pm. Elizabeth began whining and talking back at hour two, demanding to know how many minutes we had left. Minutes?! We hadn't even started the IVIg; we had hours and hours left. She can be so tolerant and so patient, and then she can become so angry out of nowhere at times. She threatened to pull out her IV (none of this was said or done in front of the nurses, of course. She is an angel with them). I worry that one day she really is going to pull the IV, as my threats of what could happen if she does, no longer have an effect because, well, after the hundreds of sticks she's had, she is probably perfectly capable of taking out an IV. About halfway into treatment, she asked me if the room was shaking, and then became afraid because, to her, the paint was dripping off the walls. So odd. Other than nausea, headaches, body pain and fevers that come along with and in the weeks after treament, she has not had a reaction during any treatments before Monday. The doctor was called, meds were given, and within minutes, she was better. Once the IV was finished running, we headed over to Radiology to get xrays done because of her abdominal pain. Of course, the films show that she is impacted yet again.
Such a long day. Thank goodness for amazing and kind nurses, and for a strong Elizabeth -who, after her whining, apologized and was back to herself. I reminded myself about a dozen times that day how lucky I am to be able to spend so much time with my sweet girl; time I wouldn't normally have with her if she was in school.....if life was normal.

There have been many, many calls from the doctors over the past few days, but I will spare you.
Tomorrow we will have an unplanned (until yesterday) visit to the GI's office for labs. If her prealbumin is as low as it has been over the past month, we have no choice- she will be admitted and have an NG tube placed. She is just losing too much weight and her labs show how sick her body is nutritionally (in addition to everything else), and the doctors have said that their backs are against the wall. A new medication was started yesterday, hoping she may be able to start eating much more, but I haven't noticed a difference.
A few doctors have asked why, given her abnormal marrow, labs, infections and the possibility of Myleodysplasia,  her case has not been presented at Tumor Board. Our Hem/Onc appointment is in 12 days, and I intend to ask that myself, but in the mean time her Pediatrician is going to call the Hem/Onc doctor herself and talk about this. Elizabeth does not have a tumor- Tumor Board is a meeting held by Oncologists to talk about patients who present with a difficult, undiagnosed, or complex case.

On my Valentine's Day card, Liz wrote "Thank you for taking me to the hospital and for taking care of me. I am sorry we have to go through this. When do you think God will be done?" Last night she climbed into my lap and repeated those same words as she whispered in my ear. Then, she said
"But on the bright side, I don't have cancer, I don't have a special brain, and I can hear. Those are good things. I just wish I knew when we would be done with this."
She is tired. We are all just so, so tired. Grateful for all of the good things. Grateful for being spared awful things. Grateful for the amazing blessings we have. But my goodness, we are tired.