Monday, April 23, 2012

Life at Zero-Round 2

St. Jude gift shop

It became official yesterday. So sorry I left you all hanging. It's been busy around here. Ok, to recap.

Yesterday Kayla's blood work came back with an ANC of zero. It was surprising because this time around, she felt a LOT better. She had energy, no fever and a sense of humor. See? You just never know what can happen. The Zofran that has been given through her line has been helping tremendously at night! We have not had any vomiting at all. Only a little in the morning. This morning it was just the dry heaves when she thought she was choking on her own mucus. I can't remember now if I mentioned it or not, but we ordered her a wedge for her bed a few days ago. It arrived next day (free!) and has transformed her bed here into a make-shift hospital bed. Not being flat on her back has really helped with the mucus sitting in her throat while she sleeps.

This morning, I sadly dropped Donna off at the airport. She is now safely back home and we all have been missing her dearly. Not missing that phone however that is like an appendage that is constantly running out of a charge, but it does take good pictures! (Wouldn't it be easier to hang a small digital camera around your wrist?)  HAHA. Donna, I love you... I miss you!

 HOW IS THIS TAKEN FROM THE SAME PHONE? Android??? UGH. Donna! Get an iPhone!!! ;)

After I dropped off Donna, I swung by the Target House to pick up the rest of the family to head on over to the hospital. We knew it would be a long day..... and it was! Aside from the normal appointments with A/T (blood work) and B Clinic for a check up with the doctor, we had a lot of magic to be had in the med room.  Today, Kayla received her G-CSF shot, a blood transfusion, Platelets, and Vincristine (Chemo).  Anthony and I headed back to the Target house at about 3:30 on the shuttle because he was going LOONY. Kayla and Den didn't get back here until 7:00pm.  Like I said, way too long of a day.

Taking the shuttle to our "temporary home" He's had his FILL of the hospital for one day. 

We walked, ok, RAN into the Target House and headed out for the playground. Thank goodness there are slides and bikes and friends waiting out there. PHEW.  Anthony quickly found his new friend Keegan and they played for a long time! It was wonderful! While we were out soaking up the sunshine that popped out from behind clouds something touched me. It happens all the time here. I still am not sure how I will ever get used to all the moving moments here that touch me every day. Moments that make you constantly grateful to be alive... There are no words. No words to describe how being here can touch the soul.  We were out watching the boys play and laugh and out walks a young man wearing a mask. He was holding a guitar. His mom was walking with him. He sat on the bench and got comfortable. His mom sat on the grass in front of him with her camera. I recognize them. They have been here for a while. I don't know their story... but you don't really need to. They are fighting. Fighting a battle that is unrelenting, horrible, unpredictable and totally unfair. It wasn't long before the beautiful sounds coming from their direction drew us all near. The boys went first!  Keegan's mom and I stood back and took it all in. In-between songs, we clapped for him. It was a moment I will never forget!  Such young talent. It was inspirational. Moving. Beautiful.
I actually have a video clip from this but am too tired to figure out why it won't post! Sorry!!
Just know... he's got TALENT and deserves a much bigger audience one day!

Kayla stayed up late. She wasn't tired after having a long nap in the med room and a blood transfusion.  Tonight, Kayla's love of couscous returned. Phew... one more thing to add to the extremely short list!

Kayla's birthday is coming up. I have a few updates about that. I am so tired my eyes are starting to sting. I promise to find time MID-DAY tomorrow when I can think to put them into better words. More updates on my mind. I'll find time tomorrow... promise. Sorry...... so tired!

1 comment:

  1. Happy belated birthday!!! Love your posts and your observation of gratitude moments. There is really something special about the St. Jude/Target House/RMH environments! Praying for you as God brings you to mind! Stay strong!!