Thursday, October 9, 2008

Highlights and Lowlights

October 9, 2008

Erin did get her neulasta injection and flu shot on Tuesday, and she was neither neutrapenic nor transfusable (though close on hemoglobin, 8.4, where below 8.0 earns you a unit of packed red cells) that day, clearing the deck for the rest of the school week. Wednesday had its highs and lows. Erin stayed after school for Student Council and gave her spiel about why they should vote for her for Treasurer. That evening she did a little homework, but like Tuesday night she was way sluggish and her head throbbed (If you Google "low hemoglobin side effects," you will find the words "fatigue," "headache," "weakness," "confusion." You could just have easily seen a picture of Erin Wednesday evening.).

We had counts done again today, because I was sure that we had dropped below the magic number and wanted to avoid the weekend rush. Call me clairvoyant:

HGB 7.4 (ding, ding, ding, we have a winner! Grand prize: transfusion)
WBC 7300 (excellent)
ANC 6200 (excellent, could the neulasta be working already?)
PLT 115,000 (still okay)

Since we waited fairly late in the day to have counts done, coordinating orders presented some obstacles for the local doc and the Houston doc. At first it looked like the Houston doc really wanted us in Houston tomorrow (you know. . .a five hour+ round trip, plus waiting in the infusion room on the busiest day of the week to be crossed and typed, waiting for the blood order to arrive in a city with heavy blood needs, and then waiting the three hours to transfuse. You do the math.). I couldn't think of a single reason why that sounded like a good idea. Especially, since Erin could drop by the local hospital on the way home from clinic this evening for crossing and typing, and just show up after school tomorrow at the hospital, watch a few movies, play some games, and order pizza in a private room during the three hours transfusion, and then drive twelve minutes home.

Luckily, the Houston doc saw it our way.

We did have another lowlight getting crossed and typed this evening. The lab techs insisted on sticking Erin for the blood sample instead of using her PICC line. They didn't even change their mind when Erin pointed out how stupid that was, since that was the whole point of having a PICC line. Sigh. However, by mixing in the news that Erin didn't have to miss the school awards ceremony tomorrow, where she will receive an award for academic honor roll the first six weeks (missing only eleven of 25 days), and that she won her election as Student Council Treasurer, we were able to balance out the lows with the highs. [NOTE: I also had to promise to give her all of the money in my wallet, towards her saving project of buying her own trampoline, if she let the tech poke her.]

We'd like to end the week on an even higher note: Erin is having an Open House at St. Joseph's Hospital tomorrow, starting at about 4:30 and continuing until about 8:00 or 9:00. She will have decks of cards and some movies. I'll probably order pizza. If you would like to stop by to say hi we'd welcome your company. Ask at the information desk which room they have assigned her to, or give me a call on my cell. Be there or be square.


  1. First time poster here-If I weren't so far away I think Erins open house would surely be good for the soul. I took my 4 1/2 year old daughter to the dentist to get a small filling. They made me wait in the watin room, even after I explained she has some serious stranger anxiety. Couple minutes passed and they called me in to persuade her to put on the nose piece. No tears, no fits, it was just not going to happen. There was no reasoning with her. They wanted to force the issue, sometimes they strap them down apparently. No thank you, not today I said and we left. I thought of you and Erin as I was driving home. Man, did I think of you. I want you to know I do what I can for your cause. It ain't nearly enough sister...I'd give anything, for Erin and all these awesome kids fighting this beast. I believe this wolf is at all of our door.
    Peace be~

  2. Just wanted to make a correction on my post-didn't mean to call it "your cause." We all need to stand up. Also forgot to tell you how I love freckles. Never met a person with freckles that I didn't adore.

  3. Shea,

    Bless you for taking your baby girl away from the dentist and home. Strapping in is just not necessary. Erin's dentist used to just sit down o the floor next to her to look in her mouth. It always made her giggle then become much more cooperative.

    Last night, the first thing the tech did when Erin walked tearily into the room was fold her up in a big hug. Just a hug with both arms. No talking. No trying to convince her of anything. No deal making. Just a hug. She held Erin gently until you could see Erin's body relax a fraction. When she did her stick it was quick and done right. We were all relieved.

  4. Hi VB -
    I think we'll miss you next week at clinic. We are scheduled for a "possible" BMA and MIBG injection on Weds and then the MIBG study on Thurs.
    No Bone scan or CT for us this go-round. Hoping our kids' scans both knock dr. r off her chair this time (in a good way)!
    Lara/Hans and crew...

  5. Vickie,

    I'm the father of a two year old girl with anaplastic ependymoma (brain cancer). I got to your site from a link on Sam Huthcison's site. I do enjoy your sense of humor, and wish the best for you and Erin.

    Anyway, the point of my post is to let you know what I found out one time when my daughter had to be stuck for crossing and typing when she had a central line for chemo. It turns out that nurses have to be explicitly certified to access those ports. The technicians that work in the blood bank aren't typically certified and cleared to access the port, so if they do the blood draw, they have to stick the patient.