We watch the lines, we wash our hands until they bleed, we wipe down EVERYTHING that comes in contact with Luke. We are careful!...because we have to be. We are petrified of him catching something...anything. He has a white blood count of ZERO.  We watch his broviac site with eagle eyes to make sure it looks the same. We were a little worried when it looked a bit red. A line infection is terribly dangerous. The doctors are always checking it. They believe it was just irritation from the CHG. After we asked every doctor and every nurse we came in contact with...we were ready to accept that it is ok right now. The fear just overtakes you. Little things happen and you fear your worst nightmare is happening. A blue Lovenox needle cover had fallen into the bed. This is not a big deal, other than it resembles the blue caps on his line enough to make me think a cap had fallen off. Ironically, later in the night I was laying with Luke because he was having trouble settlling down. It was dark and he said his shirt was wet. He rolled over and I could make out a wet circle. I was hoping all the fluids had just caused him to have an accident, however, in the light the wet fluid was mixed with blood. This time the blue cap had actually fallen off. Luke was given all new lines and we were reassured many times that nothing could have gotten into the lines. I am just so thankful he had trouble sleeping that night. We can be so careful and do everything right yet so much is out of our control.

God is protecting our little boy and my Dad is watching him very carefully...trust me, he never misses a thing!

Luke's hair is starting to fall out. He brought it up but reassured himself it would grow back and that it was from the medicine. "Right?"...he needed to know. 

We have come a long way in a short time. The screaming that came from Luke last night was, "I want my shot." Go figure!! He is so proud of himself and so anxious to display his bravery. He doesn't even want me to hold his hand. The "magic booger" they put on to numb the area may be the real solution. It takes lots of prizes and stickers and our daily chart and checklist but we are in business. 

We have also settled into our routine on the weekend and doing our best to make sure Luke has time with Dad and Grace has time to boss me around...ha!!

"Can I get a hug from Grace?" There is that squeaky voice again tearing up my heart. I just wanted to tell him of course...and yet a wave from the window is all we could offer...well, and plenty of hugs and kisses from me, Dad and Grandma!! 

I remember that feeling as a kid on Christmas morning, when you know there will be presents under the tree, but when you see them there it is the happiest, most magical feeling. That is the best way to describe the gift that was sent to us. Luke has a neutrophil count (ANC). That zero was replaced with a 20 on Saturday morning, 40 on Sunday morning and a whopping 60 this morning. We knew it was supposed to happen, but it took us all by surprise. It felt quick. It felt right. Hope lives here! 



Submitted by paula sperber on March 27, 2017 - 6:38pm

Such a brave wonderful boy and such an amazing family!!!!!!