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Chemo, Ho! Treating Brain Inflammation After Adverse Rabies Vaccine Reaction

Lilly stands on the frontier of veterinary medicine as we take on the next chapter in her attempted recovery from a severe adverse rabies vaccine reaction — meningoencephalomyelitis (inflammation of the brain and lining of the brain and spinal cord).

She represents our neurology team’s first use of subcutaneous (sub-Q, under the skin) cytarabine injections to treat brain inflammation. (Or, at least, first use in a long time). 

  • There was no code in the computer invoicing system for it.
  • I didn’t know when I agreed to the treatment how much it would even cost.
  • We have no idea how long Lilly will need the injections — if they will work, how long they will work, etc.

Everything since Lilly’s rabies vaccination on January 23, 2012, has required bravery. This new treatment plan meant sucking up a bit more courage from the ether since our neurologist was out of state when the first four injections were given over the weekend by the neurology technicians.

best dog blog, champion of my heart, border collie with veterinary techncian

No kidding. The man NEVER takes a day off, but he did get away for the holiday weekend to visit his son … and it just happened to coincide with the 21-day window since Lilly’s last cytarabine infusion while hospitalized after her massive relapse in August 2012.

Clinical worries abound — Will this work? Will Lilly survive the adverse rabies vaccine reaction in the long run? How much will all this cost in the end? …

Plus, the logistics are a BEAST — getting Lilly to the veterinary hospital for:

  • 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

***

I spent more than an hour Labor Day writing the rest of this post about some very scary financial news that will likely alter Lilly’s future.

It vanished on me. I’m so tired and so upset. I’m sure I did something stupid and lost it. I’m not sure I have the heart to recreate it in its full glory.

So, just some short, blunt notes. I’m sorry.

HEADLINES

  • Lilly seems to be doing well, after 4 cytarabine injections over 2 days this weekend.
  • The same cannot be said for me. I’ve been sobbing since about 5 pm Sunday night.

Financial reality has set in. Despite asking several times over several days about how much these chemo injections would cost and being told only that they would be less than a cytarabine infusion (IV bags just under $50) that Lilly received while hospitalized, it turns out that the shots are $100 each … so $400 per 4-shot cycle.

That’s 2-4 times more than I was expecting when I agreed to the treatment.

$400 doesn’t sound like much until you consider we’ve already spent nearly $16,000 so far this year. So, in addition to at least $200-$600 a month in meds and recheck costs, blood work and incontinence supplies, we’d have $400 treatments to pay for every 3 weeks.

Right now, it feels insurmountable based on my modest annual income and already frugal lifestyle. There aren’t more spots I can cut in our budget. I don’t own many things of value that I could sell quickly. When Lilly was hospitalized, I asked for an increase in my credit card limit and got turned down.

I went instantly to the dark place where I cannot afford what Lilly needs and that she will die because of it. That’s the gutting truth.

If this treatment doesn’t work, or if I cannot find a way to swing or lower the costs, then Lilly’s future may be short.

If she relapses again (before I can recover financially), she will either die or need to be put down.

NEVER in my life have I had to make a decision like that. I have no words for the devastation inside me.

What I wouldn’t give to take back that @#$@#$ rabies shot.

I spent part of Sunday night on the phone with our family veterinarian. I mostly cried while she talked. She feels that I’ve put on far too brave of a face for far too long and that the neuro team has NO IDEA that I’m at the financial and emotional breaking point.

I’m so overwrought that I’m not in much of a problem-solving space at the moment.

However, this week, I will put the following questions into the neuro team:

  • Confirm there wasn’t a mistake and that the shots really are $100 each. (Everyone had gone home when Lilly got her last shot from one of the overnight techs, so there was no one to ask.)
  • Ask about getting them at a discount (somehow).
  • Ask about spacing the cycles out longer than 3 weeks.
  • See if our family veterinarian can do the injections for us. Even if that doesn’t save us money, it will save me commuting time … leaving more time to work.
  • Set a limit on the number of cycles I can afford to do. Without lower costs, that might mean just 4 cycles.
  • Look for more affordable treatment options.

One of my clients is a big veterinary distributing company. I’m going ask about getting “insider” pricing on the cytarabine, if they sell it.

Others have suggested I contact the drug maker for help.

Some want to do some sort of fundraiser.

All good ideas, of course. Yet, I am spent on all fronts. Between working to have enough money to live and taking care of Lilly (which is still a 2-person, 24/7 job), I have ZERO time / energy / space left. I cannot take on one more thing. Period.

Today, I’ll just be glad my puppy-girl feels OK. If I look past right now, I cannot move or my heart will stop.

***

Here, again, is our chip-in … for those who are inclined.

If for some reason you cannot see it or use it, there is also a stand-alone chip-in page (separate from our main site).

The email I use for paypal is writehawn@earthlink.net … if you prefer to find me that way.

***

A few posts that I promised WEEKS ago will go live this week.

Beyond that, I’m not sure if / when I’ll feel up to posting.

***

If you are new to our story, you can see all the blog posts on the topic (since January 2012) using this Adverse Vaccine Reaction – Recovery from Meningoencephalomyelitis link or the pull-down category menu in the right-hand sidebar.

 

 

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.

kim tennent - September 14, 2012

good luck lilly and family. Thinking of you and hope it all turns out ok. Sending love and best wishes

MyKidsEatSquid - September 13, 2012

I’m so sorry. I can’t even imagine what you’re going through. Big hugs from me.
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Lisa - September 8, 2012

I’m so sorry you’re going through this. Lilly is a lucky girl to have you in her corner. Lilly, you and your family are in my prayers.

Kirsten - September 6, 2012

Good God, I can’t believe what you’re going through. I really hope the neuro team can help you. That expense seems criminal, after all you’ve incurred. Donating now.

You are a fighter–that strength will carry you through!

Donna Wilson - September 5, 2012

My son, when he was just a baby (many moons ago!), had an nearly fatal reaction to the DPT vaccine shot. As a result, he has lived his life with developmental disability, & mental illness. I never trusted a shot for him, myself, or my pets again!
Sending positive healing prayers & thoughts to both you & Lilly! I will be sharing this with other pet people.

Merr - September 4, 2012

I’m wondering if there might be a way for the team to view this as a clinical trial, and in doing so, work with you on the bill while writing article(s) for the veterinary medicine journals?

Thinking of you, as always.xo

Kim - September 4, 2012

My heart bleeds for you 🙁 You have done everything in your power for Lily. Please try not to beat yourself up about your inability to pay for more…it’s a ton of money and very few people *could* pay for more! Regardless of the outcome, Lily *knows* you have worked hard as her advocate, her caregiver, and her mom 🙂

Donna Hull - September 4, 2012

Roxanne, you are a courageous advocate for Lily. Hang in there. I’m so sorry that the experience has been so tough for you, your husband and Lily. The vaccine maker owes you big time.
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Jena - September 4, 2012

Please please join with us. Many of us spent as much as you trying to save our cats lives from vaccine associated sarcoma the majority don’t survive. Vets must inform us of these risks and suggest titers before vaccines. Animals really only need their puppy shots. Please sign our petition and help educate others….www.vetnegligence-vaccines.com & http://www.truth4pets.org

Melody - AllNaturalPetCare.com - September 4, 2012

I’m sorry that you’re going through such a gut-wrenching experience, Roxanne. We’ve shared your post on Facebook and Twitter in the hopes of raising more funds to help. Big hugs to you and Lilly, with prayers for better days ahead for you both.
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Eva Harris - September 4, 2012

Please send your story to Betty White. She is the world’s greatest animal lover and will help you in some way. I know you are exhausted but she is a kind and generous ady. please find the strength to send your story.

Brette Sember - September 4, 2012

This breaks my heart to read. I don’t know how you are getting through. Please know I am thinking of you and Lilly and hoping for some good news.
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Sheryl - September 4, 2012

I’m so sorry you’re dealing with this, and sending you all good thoughts for you and Lilly.

Sue Kottwitz - September 4, 2012

Jana sent me here and this is breaking my heart. I’ve been there and done that and vowed it would never happen again (money preventing me from saving one of my dogs). It is devastating and the pain never entirely goes away. Just contributed via chip in and wish it could have been more. If an online petition is begun asking the vac. co. to at least help financially, please let me know.
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Cokie the Cat: Hollywood Insider - September 4, 2012

Roxanne, Can you ask if you can administer any of the treatments yourself? I give Cokie subcutaneous fluids at home, and my mom used to give my border collie prednisone injections (in the 80’s).

I’m so sorry this is happening…

Kristin
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    Roxanne Hawn - September 4, 2012

    Hi, Cokie! That was the FIRST question I asked. The answer was no … since cytarabine is a chemo drug, they cannot legally send it home with me. Thanks for your interest and support. We simply keep putting one foot in front of the other.

Jana Rade - September 4, 2012

Working on figuring out how to raise more money faster.
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    Roxanne Hawn - September 4, 2012

    Thanks, Jana. Don’t knock yourself out for us. I know you have a lot going on as well.

Heather - September 4, 2012

How awful for you. Hopefully, one of your options will hold the answer for you and Lilly.
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    Roxanne Hawn - September 4, 2012

    Thanks, Heather. I’ll keep asking questions and looking at options as long as I can. Surely, there is a way to make this work.

Melanie @ Frugal Kiwi - September 4, 2012

So heart wrenching. My thoughts are with you, Lily and your husband.
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    Roxanne Hawn - September 4, 2012

    Thanks so much, Mel. I appreciate the long-distance love.

Jane Boursaw - September 4, 2012

So, so sorry, Rox. You and Lilly really need a break, and that’s what I’m hoping and praying for you. I wish there was a better healthcare system, not only for humans in this country, but for animals, too. It’s all so darn expensive, frustrating and exhausting.
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    Roxanne Hawn - September 4, 2012

    Thanks so much, Jane. I know that our worries here pale in comparison to the the medical realities at your house.

Jen - September 4, 2012

If this is your medical team’s first use of such a drug as a sub-q injection for this type of illness, shouldn’t it count as experimental? Has it been used by other teams, and proven to show efficacy as a treatment? I have to assume that they’ve talked this through with you, and that they’re not just trying this at random, but the uniqueness of the case makes me suspicious as to the motives of such a high-cost and rarely used (if never used before) treatment. People don’t have to pay to take part in clinical trials or experiments. I know Lilly, as a sample size of 1, is not a clinical trial, but still.

It is terrifying, to think that Lilly simply won’t live through this, or that you’ll have to make that decision based on monetary means. I really hope that it doesn’t come to that.
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    Roxanne Hawn - September 4, 2012

    Jen ~ It really isn’t “new” per se. It’s more unusual. Most dogs simply don’t require such intervention. Most dogs wean off the steroids just fine over time. Typically this drug is used via IV once upon onset. It’s the sub-q route in an ongoing way to help with steroid weaning that’s not typical. Others have tried it, I’m sure. This isn’t a stab in the dark. It’s a good option. The cost simply caught me off guard … after all we’ve already spent. I’m just freaking out. :o/

      Jen - September 4, 2012

      Ah, okay. I’m just totally unfamiliar with all of these things. You’re just so darn educational!

      I really don’t blame you for freaking out. I would. $15,000 is a lot of money, and I would be in a panic as well.
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Martha - September 4, 2012

Stay strong. Believe. Keep the Faith. I have been following your story and am amazed by your compassion and big heart. I feel the anguish in your posts. I don’t envy your position.
Know that when you follow your heart, the universe opens up.
Hugs for Lily.

    Roxanne Hawn - September 4, 2012

    I am trying, Martha. Thank you.

Sam - September 4, 2012

I’ve shared your page on FB – I’ve got a lot of animal friends there. Hopefully, with a few dollars donated by each we can ease you expenses. I know when I was battling Cisco’s illnesses, I came across a few websites that help you with vet bills. Have you looked for those? I will see what I can dig up. Also, is the vaccination company aware of these latest issues? I think it is time to start an on-line petition to have them help with at least some of the medical expenses.

We think of you daily.

Sam’s mom, Christine
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    Roxanne Hawn - September 4, 2012

    Thanks so much, Christine and Sam. We appreciate your help. You know, when Lilly was in such bad shape in the hospital a few weeks ago, my husband asked me if I was going to contact the vaccine company again. I shot back a somewhat snotty reply, “If she dies.” They made it clear they ONLY pay for diagnostics, not treatment, so contacting them again now … I don’t think would do any good. If this does ultimately kill Lilly, then I will let the vaccine company know and I will have our USDA report amended to reflect the true outcome.

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