Chemo Day

Overall a bit of a hard day for MJ.  We had labs at 9:30am this morning, followed by a provider appointment.  When her Port was accessed it was slightly bumped off center and it was painful for her.  They finally got it adjusted and decided to quickly do her chemotherapy infusion while in our provider appointment (rather than waiting until our 12noon infusion appointment).  Then they could just get that needle out of there for her.  Children's is great about this - getting it done for the comfort of the child.  Here are some pictures from the morning / day.  She also had a physical therapy appointment in the afternoon to start with exercises for her walking.   The chemo she had today also makes her constipated.  With the amount of food she is eating, due to the steroids, this just added to her discomfort.  We started some other meds to help with this tonight.  She was in bed at 5:30pm this evening.  

Children's Hosptial has a group of people called Child Life specialists that work with kids to understand what is happening to them.  Here a Child Life worker is reviewing with Madelyn what is going to happen before her Port is accessed.

Even though she can't feel the needle going into her Port, it is still scary. It is a big huge needle being shoved into her chest! We put a numbing cream on the site at home one hour before she is accessed.

Port getting ready to be cleaned before her blood draw.

Port causing her some pain today.  This is unusual.

She looked like this most of the day.  Eyebrows pushed together.  

This has always a clear sign that she is not feeling well.

Sophia did not forget that at the last provider appointment she got chocolate milk.  As soon as our ARNP walked in she was asking for it...

While we were waiting at the pharmacy for some prescriptions it struck me how small and vulnerable Madelyn looked sitting under this huge native sculpture towering above her.  Even though in pain, she finds a smile to give to me unprompted.  It is a forced one, but she was trying... for me.  

Madelyn not feeling well, while buzy sister just can't sit still in the background.