Long Day in the Universe

Good think my mom and I took separate cars today because what I thought would be a 2 hour appointment at the Reuten outpatient clinic turned into 5.  Sylvie was in a pretty good mood and was even nice to Carmen until it was time to get on the scale.  Because Sylvie has not walked or stood up in weeks, she's mortified of the scale.  So we let her sit on it with her legs crossed.  21.2 pounds.  Down over a pound since her last weigh on on Carmen's scale nine days ago.  OJ the cat weighs nearly as much.  I'm hoping the steady diet of ice cream sandwiches and turkey packs the pounds back on.  Sylvie's ANC is 350 which is low so we will have to be a little more cautious about going places with her over the next week.  

Sylvie's chart had two green tabs on it which meant "pronto" so she was immediately brought into an exam room where Terri accessed her port.  It was my mom's first time watching the needle puncture flailing Sylvie's chest and she looked rather upset.  I tried to assure her that since we put the Emla cream and Glad Press and Seal wrap on the site an hour earlier that it really did not hurt.  Siobhan came in with Barbie DVDs and Sylvie was pretty content hanging out.  For the first time she was so nice to Dr. Steele that Annette even commented to her, "See, I told you so!"  I felt redeemed.  Then Sylvie's labs came back.  Sylvie's hemoglobin was 7.6 (normal = 11-14) and platelets were 36 (labeled "critical" because normal is 135-430).  Apparently, these low numbers are 'normal' in cancer patients but need to be addressed.  I had two choices: entertain Sylvie for 2 hours while we wait for Sylvie's directed donor blood to be delivered to the clinic and then another 2 hours while they do the transfusion OR come back tomorrow.  I opted for early tomorrow and am planning on being there before 9 am.  Terri administerd Sylvie's chemo, Vincristine, and we were about to leave when Annette came running back in because Sylvie's magnesium level is critically low at 0.2.  Normal is 2.0.  Last week's chemo, specifically Cisplatin, really did a number on her.  It delayed our departure by about an hour because they had to give Sylvie an IV drip of magnesium.  Sylvie was a little upset so Annette went out and bought her an ice cream sandwich.  Sylvie had no idea that how much we all loved seeing her devour half of it (125 calories) and I was so appreciative of Annette's kind gesture.

I asked Dr. Steele about post-surgery chemo and she said it depends on the state of the tumor tissue when they operate.  Let's say the tumor is smaller, but still living breathing cancer cells.  That means more rounds of chemo.  Let's say the tumor has a lot of dead tissue. That means fewer rounds. 

I asked Annette if they could schedule Sylvie's pre-op blood work at the Reuten clinic instead of the main hospital since they will be less sympathetic to a toddler and not have a clue what to do about with the Port.  Not to mention, it's scheduled on Sylvie's birthday.  She's fixing it.

Margaret O'Neill, who is our assigned social worker dropped, by to say hi.  I asked her if Sylvie has the surgery at HUMC and we are in the Pediatric Intensive Care Unit instead of Pediatric Oncology, can we request our regular team of social workers and child life workers?  It would really bum out the whole Hughes family if we had a new set of folks to 'get used to.'  Margaret said they would definitely be there for us and Sylvie which made us feel better.

This is the schedule for the next week or so:

Today- Outpatient Chemo at Reuten Outpatient Clinic

Friday- Blood transfusion, platelet transfusion, magnesium drip

Monday- Labwork at Reuten Outpatient Clinic

Tuesday- 2:30 appointment with Dr. Steven Dunn in Wilmington, Delaware

Thursday- Outpatient Chemo at Reuten Outpatient Clinic. END OF ROUND 4!!!!

Friday- CT scans of Pelvis, Chest and Abdomen

I am not a betting woman however I would say that I think it's highly likely Sylvie will run a fever between now and next Friday and be admitted to the hospital.  I am concentrating VERY hard on thinking positive and the word BELIEVE but based on past performance, we'll be sleeping on the bench at some point next week.

When Michael got home we pinned Sylvie down and made her take Colace.  She keeps crying that her stomach hurts and it's hard to tell if it's the tumor, constipation or hunger.  That being said, once the Colace took action, Sylvie said she felt much better.  She went to bed early only to rise up half an hour later and say, "Hey Dad, I'm not tired.  Take me downstairs, I'm ready for fun."  I have to admit, I was ready for Sylvie to go to sleep!  I made Michael soft shell crabs for dinner (no exoskeletons for me!) and had hoped to grill some salmon for Sylvie but the chemo really killed her appetite.  

Watching Drugstore Cowboy for the first time.  They conjure up insane schemes in order to steal drugs.  Heather Graham is 18 in it.  Matt Dillon looks a little like a skinny John Mayer.  Kelly Lynch looks like Juliette Lewis.