Presley: Cycle 1 #3

Today was our monthly clinic visit. She had her blood drawn on Monday and only had an ANC of 100. I knew today was more of a check up and to get her IV chemo. I suspected her numbers would still be too low to start chemo. She has been on a chemo hold with her nightly oral chemo because her counts have been too low.
Clinic was its usual clinic, check in, vitals, assigned a room, port access, CBC, talk to the doc and then send us off for chemo.

Helping her nurse send her blood draw down to the labs!

This girl will be able to run clinic when shes done!

Always twirling!

..or being goofy.

I had a lot on my mind today with all that has been going on with Presley's numbers and counts. I was relieved again to hear that her counts are climbing, slow but climbing. Her ANC today was 400. RBC and platelets were higher too. The doctor is still waiting to hear results from the TNP test. A genetic test to see if she is missing a gene that would help her metabolize 6MP (her daily oral chemo). We believe she is sensitive to this drug. So today we did not start back on her oral chemo. She was given her Vincristine (IV chemo) and Petamadine, which is an alternative to her weekly pneumonia antibiotic. We think her septra (what she has been taking) is causing some issues with her counts so we found an alternative.

Something for her Docs B-day!

We really do think "Best Oncologist Ever!"

This is how I roll...to clinic! Who needs a stroller when you can a strider?

Clinic was long today from this new drug (antibiotic) that she had to take. Its not a usual drug and it has to be given as a slow drip over 1 hour. The nurses watched her for a sign of allergic reaction. It was especially dark in clinic today, every ones curtain were closed. When clinic is 5-6 hours long and trying to keep Presley entertained its really draining for mama bear. Toward the end of clinic Code Blue was called in the hem/onc clinic Room 7. Clinic became very hectic. Everyone was racing around to find something. The feeling in clinic was hard today. I knew in my heart we lost a cancer cutie today in room 7. Cancer is hard today. Children fighting cancer is so hard. My heart is heavy and longs to feel light hearted. Carrying the weight of these children fighting is a heavy load. Being in clinic with brave children is not easy. I'm use to it now, but it really use to be so foreign to me. I didn't like it. Today is different. I only know sick, bald, pale kids. They are my hero's. Everyday they do hard things. They remind me that I can do them too. The harsh reality of clinic is hard to take. We fight on, we keep walking forward. We are told we are strong, but really it's our only choice.

Curtains are pulled all around us today. It was onne of those kind of days in clinic. Trying to keep her entertained in this small space is a huge task.