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Adverse Rabies Vaccine Reaction Relapse – The New Treatment Plan

Compared to the almost-coma-like, unresponsive ragdoll of a few weeks ago, Lilly has made great gains. Monday was a tad dicey, with a morning of dullness and lethargy, but she is doing better on several fronts. For example, she finally can wag again. Here is a report on today’s neurological exam and recheck. 

Lilly received high marks for being bright, alert, and even a little attention seeking. She was funny and sweet and a little ornery with the neuro team.

Many physical signs of her brain inflammation remain — particularly in her left rear leg, but she is remarkably steady on her feet already.

Lilly is also suffering significant muscle “wasting” because of the steroids. I’m told it’s less about her current dose and more about how long she has been taking steroids now (since the end of January 2012). Her hips, ribs, spine, and even skull are visible now.

Lilly’s stamina is still awful, but she can walk our driveway from the house to the gate (up near the road) and back. It isn’t pretty. It isn’t fast, but she can do it. I try to take her for this very short walk 2-3 times a day, if she is up to it. Monday, for example, we didn’t even try.

Lilly’s incontinence is still rampant — on both fronts. I worry about toll on our well water and washing machine.

Other than one almost-normal night’s sleep Friday, she continues to wake us a lot at night for various reasons. Last night, she needed attention every 60 to 90 minutes.

I’m bleary today from fatigue. So, just a few quick notes on our newest plan.

Starting Saturday, Sept 1, and Sunday, Sept 2, Lilly will receive (in addition to everything we’re already doing):

  • 2 sub-Q (under the skin) injections of cytarabine / cytosine (a chemo drug that has tremendous anti-inflammation properties for cases like Lilly’s)
  • 10-12 hours apart
  • 2 days in a row
  • Every 3 weeks
  • Until further notice

Our goal is to use this drug as a “bridge” while we try to wean Lilly off steroids (for the 4th time). The potential for success and the timeline for that process remains unknown. We’ll just take it one series of injections at a time.

Alas, because the drug is “chemo,” they cannot send it home with me to do the injections myself.

So, in addition to the clinical / medical realities of this decision, I’m grappling with the sheer logistics of essentially 4 separate trips to the neurologist in 2 days.

I need to decide:

  • If I will drop Lilly off each day and pick her up 12 hours later
  • If I will make 2 trips each day there and back home
  • If I will make 2 trips each day, but find somewhere to hang out / probably work in between trips to the veterinary hospital

If I left her, at least one of the days, then our neurologist could give her a quick exam to keep tabs on her progress … in addition to more formal, sit-down appointments every 6-8 weeks (assuming things continue to go well).

Many, many, many questions remain about how all this might turn out. Her prognosis is unknown. I’ll try to write more about those discussions between me, our family veterinarian, and our veterinary neurologist in the coming days.

But, let me say this out loud … I fear there is a chance we’re merely buying time. I remain heartbroken, but hopeful.

Lilly is still in this fight. I’m backing her with everything I’ve got (and many things I don’t). Our veterinary neurologist is knocking himself out, digging through the research, to find the right combination of meds to get Lilly through this immune system flipout relapse and into “remission.” Even then, she may require some immune-mediation meds for the rest of her life.

 

 

 

 

Roxanne Hawn

Trained as a traditional journalist and based in the Rocky Mountains of Colorado, USA, I'm a full-time freelance writer for magazines, websites, and private clients. My areas of specialty include everything in the lifestyles arena, including health and home, personal finance and other consumer interests, relationships and trends, people and business profiles ... and, of course, all things pet related. I don't just love dogs. I need them in my life. Seriously.

Susan - August 31, 2012

Oh my gosh, Roxanne. You two have been through so much! I hope this new treatment plan will put Lilly in remission. It sounds like she feels good, in spite of everything. I love that she was ornery! 😀 I second what Jana suggested regarding seeing if this could be done by your local vet. Maybe the schedule could be adjusted so the medication is administered on weekdays instead of Saturday and Sunday.

Keeping you in my thoughts and hoping for the best!

Susan T in AZ
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    Roxanne Hawn - August 31, 2012

    Thanks, Susan. Actually I PREFER weekends. I asked if she could have the treatments on Sat/Sun, and it merely turned out that this time it was 21 days perfectly from her last cytarabine infusion. Being self-employed, I work all the time anyway, but I already lose chunks of at 3 days each week to eldercare responsibilities (my mom is terminally ill). Going into year #4 of constant, multi-front family medical dramas (Lilly is only the latest), I simply cannot afford to miss much more “work” time. My clients have been great / understanding / etc, but with these huge vet bills looming. I have got to work or bad things are going to start happening financially.

    So,

melF - August 30, 2012

Oh Roxanne. I hope this isn’t merely buying time. I want so badly for Lilly to be a success story. My thoughts, hopes and prayers continue to be with all of you. I cannot imagine how exhausted you are at this point.

Try and get some rest hon. Okay?
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    Roxanne Hawn - August 31, 2012

    Thanks, Mel. I’m trying. Even when Lilly *is* quiet, I have so much on my mind … it’s hard to sleep.

Jana Rade - August 30, 2012

Your family veterinarian couldn’t administer the chemo treatment?
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    Roxanne Hawn - August 31, 2012

    That’s a good question, Jana. I suspect it’s a matter of open hours (not around late on Saturday or at all on Sunday) and control, but I’ll ask. When she was first released from the hospital in February, I asked about her being able to do the frequent rechecks and was told he is very protective of his cases and wants to keep tabs for a long, long time before “releasing” dogs back to their regular practice.

Saoirse - August 30, 2012

Sending a ton of love and light to you and Lilly and Tom. I feel so sad when you express the thought that you might be buying time. I just know that you see her fighting and you will do everything in your power to fight for her, too. I walk with my boy Jasper in the cemetery every morning now, while it is still so hot. We pass by the flowers at Ms Hawn’s grave and send a prayer winging every day. If there is anything I can do to help on treatment days, please don’t hesitate to ask. It would be my great pleasure to do anything I could, including a load of laundry. 🙂 Or buy a cup of coffee. Our best to you all.

    Roxanne Hawn - August 31, 2012

    Thanks, Saoirse. It’s nice to know you see the grave flowers every day. We’re doing our best to keep them going, even as the season changes.

LeeAnne McAdam - August 30, 2012

We are all still pulling for you…not much practical help, but we’re fighting with you as best we can. We’re sure Lilly has good days ahead of her and gains strength from your love. Prayers…

    Roxanne Hawn - August 31, 2012

    Thanks, LeeAnne ~ good thoughts welcome.

KB - August 30, 2012

We are pulling for you, and I know how difficult trying to work in regular long vet appointments at a faraway place is. I hope that you and Tom can sort it all out. I’d offer to help… but that would be a hollow offer right now. R is sick (a little scary, actually, but I’ll spare you the details until we know whether it’s life-threatening – you can imagine how we’re freakin’ out right now) AND Shyla is a full-time management job. Not house-trained and has giardia… So, maybe I can help somehow after our life settles a bit.

I hope that Lilly and you have many good days ahead of you.
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    Roxanne Hawn - August 31, 2012

    Oh, boy, KB. I’m so sorry to hear about R being so sick. Not that there is ever a good time, but it’s rotten timing anyway. We’ll figure this out. It’ll help (somewhat) if I can keep these 4 trips in 2 days so that they fall on weekends, but as the weather gets bad, it might be dicey stressful to make that drive 4 times. We’ll just have to see.

Stephanie - August 30, 2012

Keeping you both in our hearts – your strength through out this whole ordeal has been admirable.
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    Roxanne Hawn - August 31, 2012

    Thanks so much, Stephanie. We’re getting through this, but it isn’t easy.

von - August 30, 2012

My dog recently left me( but is always with me) and moved on to Rainbow Bridge. It was the hardest decision I’ve ever made.
I hope Lilly gets through this, I really do.
This helped me.
“Listen to the animals. what feelings do they communicate? Do they suffer? Has the light gone out? Is the spirit lost? When the cost is too great. When they struggle for life. If they cannot live their lives. If keeping them alive is for you and not them. Then,please,show true love. Do what is merciful. learn what it means to be selfless, to know gratitude. Speak for them, when they cannot speak for themselves. When you know it is time for them to go.
Listen to them.
And let go.”

    Roxanne Hawn - August 31, 2012

    Von ~ I’m so sorry to hear about your loss. Thanks for your kind words.

aTXtumbleweed - August 30, 2012

Hang in there. You don’t know the outcome so you have to keep fighting. As long as Lilly has fight in her, you keep the fight in you – I know you will. Praying for guidance for the veterinary neurologist to find the right path and praying for you and Lilly also.

    Roxanne Hawn - August 31, 2012

    Thanks so much, Tumbleweed. I hope this strategy works too.

Ingrid King - August 30, 2012

I’m keeping Lilly and you in my thoughts and prayers.

    Roxanne Hawn - August 31, 2012

    Thanks, Ingrid. We appreciate it.

Merr - August 30, 2012

Thinking of you and Lilly ~ I was waiting for an update to see what’s what. Is it possible that the waking might-maybe also be due to anxiety? And if so, if the docs can give her a little something to settle her, now that she is more stable than she was – if she is not already on something. I will keep checking for your updates.

    Roxanne Hawn - August 31, 2012

    It’s possible, Merr, but it seems more like she is just fussy / ornery. They will NOT let us use any of her anxiety meds because of their effect on brain chemistry.

Linda Messina - August 30, 2012

Hang in there Roxanne and Lily. I really do understand what you are going through. Continued prayers for you.
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Sam - August 30, 2012

We are still saying prayers for her. Is there a library there that you could work at? They usually have wireless/wired connections.

Sam
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    Roxanne Hawn - August 31, 2012

    That’s a good idea, Sam. Yes … there actually is a public library right across the street from the hospital. It has a parking garage as well, so I would worry less about leaving Lilly in the car out of the sun (assuming it wasn’t too hot or too cold). It isn’t in a great part of town, though, (the library has signs in the bathroom saying that you cannot bathe in the sinks) so I’d have to pack up my laptop every time I went out to check on Lilly. It would be easier to be away from home or to camp out somewhere for the day, if she wasn’t incontinent. I’ll have to organize myself and make sure I bring enough supplies, etc.

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