Wednesday, September 3, 2008


September 3, 2008

With apologies to all of you whom I've spoken and/or e-mailed with when I described the pemethexed trial with the expectations that that's what we were doing, I can now tell you all that we will be spending the next seven days in-patient at the Texas Children's Hospital Spa and Getaway. While Erin's CT scan last week indicated we need to change directions, her increased pain and falling appetite indicated that we needed a bigger change in protocol than waiting another week to become eligible for a single agent trial was going to give us. For those of you taking notes, we are going to try five days of topotecan follow by a 48-hour continuous infusion of adriamycin and vincristin (I had the link of the full-text article at my office today, but now I can't find it. I'll look for it later.).

At first we thought the (relatively) benign path offered by pemethexed with weekly clinic visits and an infusion once every three weeks, would fit conveniently into our schedule. Our optimistic selves thought that this route might help us maintain that very active and normal existence we crave and strive for. Erin, however, showed signs that her cancer might not be willing to cooperate with that plan. She did well at school yesterday (according to her teachers), but she required more tylenol at home. Last night she had a pain episode with back spasms and throbbing. I gave her a tylenol with codeine and a back rub. When she recovered, my dutiful child finished her Spanish homework and practiced the piano (this was close to 9:00), then went to bed.

I woke up, convinced that we couldn't wait a week, nor depend on a single-agent trial. A call to the onc, helped us think through our options, and can you believe, we chose the least convenient thing offered: a PICC line and seven consecutive days in-patient. Erin and I are going to treat this as a spa occasion. We're going to watch movies, make crafts (Lara, help! with the lanyard project), and call for the concierge if we need anything special. Erin prospered at school today and did her piano lesson with verve. When I explained she needed a PICC line, and she wouldn't be able to swim for the rest of the month, she asked if I would call Jackson and see if she could swim this evening. I did. She did. And she just got back home (9:00 p.m.). When I told her she would lose her hair again (third time), she said, "well, maybe I can get my hair cut like Mrs. Freeze (who has a very cute, short cut), you know, so people can see a 'V' at the back of my neck. Then they won't really notice that my hair is gone when I lose it in a couple of weeks."

We leave Bryan tomorrow morning at 5;30 to make it to Houston for a 7:30 check-in, PICC line placement, and immediate in-patient stay. We will be there until next Wednesday. We anticipate being bored and lonely, so if you live in the area or can plan a visit, feel free to keep the party going!

If there is wi-fi, I will be updating regularly (we haven't been inpatient in a loooonng time). If not, go read something else.


  1. We're glad you have a plan and will be pulling for you. Please know that we're sending karma and prayers from San Diego.
    Neil & Margot.

  2. Wishing you the best from Chicago area. My daughter has Neuroblastoma as well, and she progressed yet again. Good to know that there is a treatment that you can go on so soon.
    Karolina and Eliza

  3. Glad you have a plan and that it will start so soon. Erin, that fabulous attitude will get you through this. Praying for you here in Nebraska!

  4. Vickie:

    Sorry to hear y'all are inpatient again. I just sent y'all a TCH greeting card, as I know Erin used to take great pride in how many she would amass. In doing so, it occurred to me that others might like to do the same. For those who do, here is the link:

    I love you and hope to see you both very soon!

  5. I'll get the supplies to you as soon as i can!!!

    The sooner the better!


  6. Erin,
    I feel so honored that you would want a "do" like mine! Hair loss is the pits, but you and I know - it's only hair and it grows back! You are in my prayers.
    Mrs. Freeze

  7. Hi guys Sorry that you are going to be inpacient again taht stinks but is necessary to get her better and back on her feet!!!!! We will be in Houston on WEd and Thur for scans so we will be by to visit and if you need anything from home just let me know we will bring it with us. By the way they do he Wy Fi you will have to get a code from the gift shop it is free. Good luck we will be thing about yall :)
    Tracy Ash

  8. Hey, Erin!

    I sure do miss you already. If you are getting bored, get on your mom's computer and Google "Riddles for kids." There are some really funny riddles and other interesting things. I love you all there is.