Tough Day

        
We always enjoy seeing photos of my brother, mostly because we miss him so much. Today my Dad sent this picture ( I don't know how his 200lb body is being held up off the ice by a stick in his ribs, but I do know that this is why I dislike the game of hockey!) and titled it "Tough day at the office for Trav"

Liz said she had a tough day too......

Today was Elizabeth's scheduled IVIg treatment. These are always such loooong days at the hospital as they IV runs for four hours and then she is observed for two hours following treatment. The IV should have started running at 9:00am, but because of a few complications, today it started 2 1/2 hours late, which meant we didn't finish until 5:00pm!
Liz is fully aware of how long the day will be during treatment, but this morning she spent a full hour and a half yelling and crying to me, asking how much longer it was going to take (we hadn't even started yet!) and telling us all that she would only stay for twenty minutes or else she was going to take out her iv. This threat is not to be taken lightly because she totally knows how to take out an IV and would have no hesitation to do so. After such a long time of her constant whining, and knowing we had six hours left, I finally flung open the door to her room and pointed at the room across the hall from hers and then leaned close to her ear and said
"That little girl has cancer and she is getting chemo right now, without crying at all. You can cry when you hurt and you can say how bummed you are that we are here, but stop whining. There is no whining at treatment allowed!"
Not my best mommy moment, and probably one I should keep to myself, but it is reality that I am not composed or able to hold my tongue at times, so there you have it.

Liz has experienced the typical headaches, all-over body pain, fevers and nausea that can accompany IVIG treatments in the days and weeks that follow the day of infusion. Today, though, she had horrible dizziness and visual disturbance during the treatment and it made me nervous at the time. The poor baby kept saying that the paint on the walls was dripping and that the room was shaking and moving. She bacame very scared and just wanted me to hold her. It took a lot not to insist that we stop the IV from running because I was worried what may follow. After some meds, she was better and we continued treatment.

Labs this morning show that she is dehydrated.  Again. An xray done this afternoon show that she is impacted with stool yet again. Urine from today shows that she is dropping protein at a concerning rate (our kidneys work to filter waste from our blood while retaining components our body needs, including protein. Some diseases and conditions cause the proteins to pass through the filters of the kidneys which is excreted in urine. Protein in urine is measured as a +1, +2, +3,+4. Liz is at +4.... not good.
Soooo,  the doctor called tonight and said that we must head back to the hospital first thing in the morning to repeat the urine labs, see doctors and wait while they all talk and figure out what to do next.

There are many things I could write about as I absolutely have thoughts and feelings about all that is going on. And yet, I feel numb and at a loss for words for anything other than facts. I feel alone, I can say that much.

Tomorrow will be a hospital day......but it is also I Love You Day! The kids are beside themselves with anticipation. They have chosen little gifts for each other and look forward to the traditions of the day. When Liz headed to bed, she said "Can't wait to wake up and follow the rose petals to the dining room table that I know you will have all decorated!"
Now I just have to keep awake long enough to decorate and put out the surprises. Such fun!

Will update more tomorrow. To say that prayer and support is appreciated is an understatement. This feels like it is going to get worse before it gets better.......