Chemo Monday (Week 17)

It is hard to believe another new month has started. August marks our fifth month in the chemo clinic and in many ways it seems we've been here for much longer, hard to believe. Julia and I have been talking, reading, and 'playing' about her chemo this weekend. She hasn't revealed anything especially surprising, but I think she is feeling more empowered in the situation and in control of her life.

When she got up this morning I put the emla and Glad wrap on her port and the tears started. Things were not looking good. She breaks into the most pitiful cry- 'hold me Mommy" It breaks my heart. We kept going and she was happy to squeeze in a quick game with Daddy before he left for a business trip. We headed off to Brenner's with the Little Einsteins' movie playing. Julia tried one last time as she climbed into the stroller, "How about you go in and I'll just wait in the car?" Doesn't hurt to ask right? She resolved herself to my answer and announced she was pushing the elevator buttons.

When we got up to the floor, she was happy to see Ms. Betsy and actually said she would stay at the art table while I went into the clinic to register. She's growing up.
One of the Arts for Life interns (Michelle) worked with her today. By the time I came out she had drawn her own giraffe, with just verbal direction. Pretty amazing for a 3yr old!
Soon Shea was calling us back for triage. Julia knows the drill by heart now, step by step. It's funny that at a regular pediatrician's office height and weight are to see how much they've grown. Here that's just an afterthought. They measure to see how much poison to give.
Sorry to sound so negative but its true. There is a constant hum in the clinic of 'meters squared, kilos, milliliters, dose limits...' If you listen, you hear it- every doctor, nurse, med student, and intern. They're always calculating, conferencing, and recalculating- walking the delicate line between helping and hurting- the line that's always moving. I don't know if it's reassuring that they are being so careful and consulting so many minds on each and every decision or disconcerting because there are so many variables at play.

We enjoyed playing in the playroom. the big tub of blocks was calling her name. Here's the house she built for her people...
Then Ms. Stacy broke out some brand new playdoh. Julia has been on a playdoh kick all weekend and was very excited. She's just like her mother- the thrill of new school supplies :) Her favorite activity these days is cutting off the hair- so symbolic and empowering for her...
Ms. Karen called her back for port access and I was sure she was going to resist, but she amazed me. She asked what was happening and wanted to help, but didn't get upset. She was back to being Ms. Karen's little helper.

Then Ms. Dianne came in for her physical. For the first time Julia did it by herself, with me on the other side of the room...
Everything checked out well. They want her to continue with the Miralax and pain medicine as needed. We also talked about pneumocystis pneumonia (PCP). Cancer and HIV patients are at a high risk for PCP because of their weakened immune systems. This disease is caused by a fungus present in the lungs of almost everyone, but our bodies keep it in check. Typically chemo patients are put on prophylactic bactrim. Julia was already taking bactrim the first month of chemo because of UTIs. When the urologist canceled her orders for prophylaxis, oncology debated whether or not to pick back up. The initial decision was no, but today they changed it to yes. God has protected her so far, and we intend to keep her that way. So now she will take 3 days of bactrim every week.

We also talked about the flu. They are very impressed that she did not contract H1N1 from Carter 3 weeks ago. I guess we know something about quarantine and did it somewhat effectively. She said we will all be given flu vaccines as soon as the clinic gets their supply. They have a special infectious disease team that determines the plan for these type situations. I was curious what would happen with Julia's. She said they vaccinate chemo patients in hopes it makes a small dent. It is unclear whether their immune systems are able to do anything with it, but they still try.

We went back out to paint while we waited for her labs to come back.
Things came back pretty normal for Julia. Her white blood count is back in the 2's where it's been through most of this. She is back to being neutropenic- our brief break is over. Her red blood count is holding in the normal range. They decided to go ahead.

Julia has been riding the car all over the clinic this morning. Ms. Karen was so sweet to do her treatment on the car. Did you know they have drive thru chemo?  :) She received her vincristine, zofran, and they hooked up the doxirubicin pump...

This moment really struck me this morning. It is says so much...
This cancer is so much bigger than her. (Thankfully our God is much bigger than cancer.) It also shows the burden she can't escape. As a kid she wants to run and play freely, and she should- but she remains tied to and controlled by the cancer right now.

But it also shows our little David facing her Goliath head on with strength and grace.

One more bag down...
...only a handful more to go.

Julia is resting well right now. She hasn't had much of an appetite, but she's hanging in there. Sleep well my sweet girl, sweet dreams, God bless you!