After the Crying: Our Way Forward

I am humbled and honored by your continued devotion to our troubled journey. Thanks to YOU and your chip-in help, we’ve been able to pay our bills this month. In a way, we’re starting with a cleaner slate. Not much money, but not much debt.

Sort of.

If you can ignore the nearly $16,000 we’ve spent and all the emotional and physical angst.

Amid all that, we’ve made some big decisions about Lilly’s future in consultation with our veterinarian.

I’ll preface this announcement with links to the two most helpful research items that provided background and a framework for these decisions:

The first is a lecture note summary from a board-certified veterinary neurologist from Cornell University on the drugs currently used / recommended for treating various forms of brain inflammation in dogs. (If you click the link, I believe it’ll download automatically. It’s a MS Word document that I’ve highlighted and such.)

The second is a study published in 2006 in the Journal of Small Animal Practice that looked at the effectiveness and safety of the steroids + chemo treatment for 10 dogs with brain inflammation of unknown origin. (This link is a PDF file.)

The treatment is the same as what is currently underway for Lilly. It’s important to know that cytosine arabinoside and cytarabine are the same drug. Typically, when I talk about Lilly’s chemo treatments, I’ll use the term cytarabine.

I also went through my own notes about Lilly’s case and found the following patterns / details about Lilly’s past relapses — of all sizes (a total of 3): 

She didn’t have any trouble until we got the dex dose down to 0.375 mg, especially when we tried to go to every third day or every other day.

Right now, Lilly is taking 1.5 mg of dex every day. We hope to wean her down to a very low dose of dex or completely off the steroid by using the cytarabine injections as a bridge.

We do NOT know if it will work. The study essentially found that the 5 (of 10) dogs who survived until the study was published required long-term, ongoing use of cytarabine to maintain “remission.” The other 5 died, including one Italian Greyhound with a history of adverse vaccine reactions.

The study also gave us some sort of framework for an initial “trial” of this treatment because it began with cytarabine injections (2 a day, 2 days in a row, every 3 weeks … just as we are doing) over 4 months, while weaning the steroids over 3 of those months.

best dog blog, champion of my heart, border collie faceLilly’s Treatment Plan

  • Cytarabine injections (2 a day, 2 days in a row, every 3 weeks) for 5 months, so that means a total of 8 cycles.
  • Wean steroids slowly over that time, as Lilly’s clinical status allows.
  • Reassess after that (early February 2013).

If you missed the news earlier, our neurology team has agreed to do the 4 injections for $50 / each or $200 per cycle (instead of the $400 per cycle). So 8 treatments will total a $1,600 commitment from us.

(We spent $1,600 from the chip-in for Sept bills. That leaves just over $400 from your help, which will pay for 2 of Lilly’s cytarabine cycles. Thank you!)

During this trial period, we will continue to have the neurology team give the injections.

If, in the future, we move to a maintenance dose with longer time intervals, then our family veterinarian may take over those duties.

In addition to the $1,600 in cytarabine, I’ve roughed out other costs for those 5 months, and with meds, diapers, recheck appointments, and blood work … it’s a total financial commitment of approximately $3,000-$3,500 … to give this treatment a chance to work (or not).

Many of the dogs in the study suffered relapses and were either euthanized or required additional medical intervention, including stepping up treatments to a higher level.

While we reserve the right to change our mind, Tom and I agree that if Lilly suffers another major relapse that will likely be the end of this journey. That’s potentially too much to ask of her amazing brain … and my heart and budget. Ooph!

Lilly’s next cytarabine cycle is scheduled for Sept 22-23. We meet with the neuro team Oct 15 to assess her progress. We will probably reduce her steroid dose sometime in that window, assuming she remains clinically stable.

Having done all this research, having worked through Tom’s concerns about the cytarabine (all studies show very few side-effects of major concern), and having taken a hard look at our budget, I feel pretty good about these decisions.

As always, we’ll keep you posted.

Lilly is doing OK. Not great. She isn’t making huge gains day to day, week to week, but she is good and steady and mostly herself.

Though she does sleep a lot … except at night when often keeps us awake. Silly!

best dog blog, champion of my heart, border collie sleeping

Have a nice weekend. We’ll try to post soon about our various dog diaper solutions, how exactly I express Lilly’s bladder, and other functional and maybe helpful-to-you topics.

Again, thank you!

21 thoughts on “After the Crying: Our Way Forward

  1. September 17, 2012 at 6:01 pm

    Thanks for stopping by and offering words of support to us, and so I am stopping by your place to offer a bit of support to you. :) I think your plan sounds like a solid one and hopefully will bring you some peace. One thing I am trying to remind myself to do is to try to not think about cancer all the time, but instead think about how lucky I am to have Cosmo every day that I do have him. So in both our cases, while we were expecting lots more time, at least we have that chance to enjoy every moment best that we can. Hoping for the best for you and Lilly and for many good years to come. xxoo
    Diane @ To Dog With Love recently posted..Monday Mischief: Back to the "New" NormalMy Profile

  2. September 17, 2012 at 8:09 am

    You’ve been in my thoughts, and I will continue to send healing vibes Lilly’s way. ((hugs))
    Pup Fan recently posted..Vampire Dog is no BunniculaMy Profile

  3. Jennifer
    September 16, 2012 at 11:23 pm

    I will pray for Lily I feel very sad to hear that..I hope that he can survive..
    Jennifer recently posted..Tinnitus Retraining DevicesMy Profile

  4. September 16, 2012 at 3:22 pm

    Lilly has a very smart and strong advocate in you, Roxanne. I’m glad you’ve been able to come to some sort of resolution regarding the treatment. The Six Pack and I are pulling for Lilly every single day.

  5. September 16, 2012 at 2:49 pm

    I’m glad you’ve come up with a concrete plan — that gives all that angst some structure. I hope that it’s a huge success and that Lilly will improve without relapse and have many good years ahead of her (and that you and Tom will too after all this!)
    Edie recently posted..Blogging While Jewish: A Rosh Hashanah ReverieMy Profile

  6. Jane Boursaw
    September 15, 2012 at 9:18 am

    HUGS to you.
    Jane Boursaw recently posted..Dance Moms Was My LifeMy Profile

  7. September 14, 2012 at 8:59 pm

    Chemo is a very hard to go threw. I had to and if it wasn’t for my furbabies I wouldn’t have went threw the whole thing. I did and am healthy now.
    One of the dogs that is very special to me was my dog Drifus. He was the clown, when he saw I was down he would be the goofy clown who would never fail to make me laugh . I had to take him to the vet because he couldn’t pee, they found he had prostrate cancer. I wasn’t ready to say goodbye to him and took him to Cornell University,I thought maybe they could help relieve his bladder and I would have a little time to spend with him and say goodbye. They couldn’t help him so right there at the University I laid on the floor with him and said my goodbye and had them inject him with my body against him and my arms around him. It still affects me to this day going threw that experience. The best advice I can give you is spend the time with Lilly show her you Love her please take advantage of this time that you do have with Lilly. I understand what Lilly feels like having the Chemo ,I also understand what you are going threw not wanting to let her go.

  8. September 14, 2012 at 4:02 pm

    I think doing OK is good, all considered. (((hugs)))
    Jana Rade recently posted..K&H Cool Bed III: Ooh, It’s Cool!My Profile

  9. September 14, 2012 at 1:14 pm

    Our thoughts are with you and Lilly. I hope that whatever time you do have left with your girl is the best it can be and filled with lots of love.
    Sarah recently posted..The Brothers BostonMy Profile

  10. aTXtumbleweed
    September 14, 2012 at 12:22 pm

    Sound like you have it planned out – now you need prayer that Lilly will not relapse and continue to get better. Will be praying for you and Lilly.

  11. September 14, 2012 at 9:13 am

    This sounds like a good plan. I’m really sorry you have to make such hard decisions. Here’s hoping Lilly does well with the treatment.
    Brette Sember recently posted..I Loved Italy, But…My Profile

  12. RACHEL HOPPLE
    September 14, 2012 at 7:44 am

    “……mostly herself”. AWESOME! Thank the Lord! :-)

  13. Sam
    September 14, 2012 at 7:17 am

    We think of you daily and are hoping for some signs things are getting better.

    Sam
    Sam recently posted..Crinkits – and a big thank you!My Profile

  14. LeeAnne McAdam
    September 14, 2012 at 6:45 am

    Our hearts and paws are with you. I think you’ve done a wise thing to determine just exactly what Lilly, your household and your heart can withstand. Hoping for the best and holding you close in our hearts…

  15. Sue at Talking Dogs
    September 14, 2012 at 6:32 am

    Though I don’t comment here or on FB, I continue to follow you and Lilly’s journey. I’ve lost three dogs since October, so you’d think I’d have some idea of the “right” words to say. But I don’t. My heart breaks for you. Please know you’re all in my thoughts and prayers.
    Sue at Talking Dogs recently posted..Adopt an Abused Pit Bull Terrier Dog Looking for LoveMy Profile

    1. September 14, 2012 at 7:41 am

      Ooph, Sue! That’s too many losses in one year. I’m so very sorry.

  16. Sheryl
    September 14, 2012 at 6:29 am

    Oh, Roxanne. My heart is with you.