Sunday, November 10, 2013

Maintenance, round 1 of 8

Hey! We're in Maintenance!

On August 14th Molly had a lumbar puncture scheduled for methotrexate, and also vincristine into her port. It was pretty routine. I am looking forward to these routine visits! It's going to be good!

It's a good clinic visit! Two thumbs-up!
 At home we gave Molly the steroids (dexamethasone) for 5 days (she tolerated that pretty well, no big fits were thrown), and we also gave her mercaptopurine every night and methotrexate every Thursday night (except the first week, since she got methotrexate into her back at the clinic). Of course we are still giving her the prophylactic antibiotic Septra every Monday and Tuesday. Sometimes I get asked by a family member or friend what treatments Molly is on, and I give them the list, and they are shocked a little at how I am able to keep them all straight. Well, I've gotten quite used to it I guess. That's how. These medications are like our family members now...they are always there and we treat them like we love them, even though sometimes they can be a pain in the rear end!

I love watching this kid sleep! Almost as much as when she's awake!

On September 11th and October 9th Molly had clinic appointments just to go in and have labs drawn and get vincristine into her port. Those also went very very well. The lab results keep coming back great and there's no need for transfusions or anything. At the September visit, the doctor had us test Molly's stool again for C. Diff. It was positive. So we had to do a round of Vancomycin to try to rid her of the problem. I have also been giving Molly certain probiotics that is supposed to help a lot with this antibiotic-caused bacteria in her intestines. We've tested again recently and it has not gone away yet. We do not qualify for the research study that is going on right now for a more potent medicine because Molly's C. Diff. symptoms are relatively mild, so we'll just keep on giving her the probiotics until she's off any antibiotics and hope that we can knock it out then with one of the lesser potent drugs.

In mid-October we participated in the LLS Light the Night cancer walk. One of Molly's awesome great-aunts helped us get a team together and basically did all the work for us! All we had to do was show up! That was a fantastic night, and it wasn't even that cold...We had a ton of fun though.



Our Light the Night team. Molly's Minions.
Big Sis the Purple Monster and Molly the Ladybug (and some random old lady in gym shorts...)
 Every 12 weeks is the start of a new maintenance round. I'll try to update the blog at each new round, unless something big changes, it which case you'll hear from me earlier (pray that doesn't happen...). Life is settling down and we are able to get into regular routines that keep us busy, so updating the blog is now something I have to schedule, rather than just do when I am bored.

6 comments:

  1. Hi :)
    My name is Caitlin, and I am a 17 year old from New Zealand. Very soon (16th December) I will be shaving my head to raise money and awareness about cancer. I have been following Molly's blog since just after it started, around the time that my mother was diagnosed with lymphoma. Although you don't know me, I feel that I know Molly and I have been alongside her this whole time. I would very much like to dedicate my shave to Molly and her courageous battle. With your permission of course, I would like to use a photo and her name for a poster. It would say something like "Please help children like Molly - donate today for a cure" etc
    I would provide you with pictures of the event if you would like that.

    Even if you decide that you would rather not have your daughters name out all the way over here in NZ, I would still dedicate it to Molly in my heart.

    My email is caitlindonna123@gmail.com if you would like to ask any questions.

    Thank you x

    ReplyDelete
    Replies
    1. Caitlin,

      I'm touched by your comment! Of course you may use Molly's picture for your event! We would really love to see pictures when it's done. Thanks for contacting us!

      Leisel

      Delete
  2. Hello - My wife and I wanted to reach out, as your blog has been tremendously helpful to us. Our daughter was diagnosed with ALL this year and is currently in Interim Maintenance I. It has been very informative to compare her treatment with where Molly was at the same point.

    Hopefully everything is still going well and Molly is in great spirits.

    Thank you for posting everything about your journey.

    -Ian and Emily Roeder
    ianroeder@gmail.com

    ReplyDelete
    Replies
    1. Ian and Emily,

      Thank you so much for that! I started this blog for two reasons: to update family and friends, and to help other families who might go through this.

      Molly is doing very well, still in Maintenance of course. I haven't been posting as much anymore because everything is pretty much the same and our lives are returning to where it was before. No news equals good news, right?

      Anyway, thank you again, and I send you every good thought I can for your family's journey.

      Delete
    2. Great to hear that Molly is doing well and life is getting back to normal. That is very encouraging!

      I definitely agree on no news equals good news. Thank you for the good thoughts and thanks again for your blog - it is the best one out there in our opinion.

      -Ian

      Delete
  3. Thanks for the info! I really share this article for other family!

    ReplyDelete

To protect us from spam, I am moderating comments. Please use your name so I know you are real, and please comment! Don't let the possibility that it may take a couple days before your comment is visible deter you from commenting.