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On June 1, 2010 our two year old, "Little Air Bear," was diagnosed with Childhood Acute Myeloid Leukemia (AML) Type M7. After enduring 146 days at Primary Children's Hospital, Erin is now in remission and living a full life at home with our family. Her strong will and constant happy smile is an inspiration to us all. Through our difficult circumstances we found great strength and peace in our Savior, Jesus Christ. Thank you for checking in on us.

Tuesday, September 7, 2010

Medications 101

Medications.  Blah.  This time around we brought Erin home with more medications than before.  The pharmaceutical guy from our Home Health Company dropped off a cooler full of medications and a stack of boxes of supplies.  I should have taken a picture - sorry.  There were 90 saline flushes that we use to flush her line before and after a medication is given, we've almost used 1/2 of them and it's only been 3 days. She is going to be home until Sept. 20th. We get to keep her for 2 weeks because the doctors wanted to have all her medications run their full course and hopefully get all the infections out of her system.  I have made this rather detailed post so that in future days we can look back and say, "phew, remember those days.  I'm glad they are over."



This little bottle of Voriconazole (Vfend) costs $700.
It will last us 2 weeks.



Here Erin is watching Angelina Ballerina and trying to keep still while she has her pump going with Vancomycin.  You can see one of her lines hooked up to a tube that runs into this pump.  We've tried putting the pump in a backpack and having her wear it around, but she hates that.  We have resorted to just keeping a really REALLY close eye on her while she is hooked up so that she doesn't go running off, have it get caught on something and then rip her line out.  That would not be nice.

Here is a schedule of our medications over a 24 hour period:

8:00 am Voriconazole (oral)
8:00 am Septra (oral, only on Mon. & Tues.)
11:30 am Atarax (we slowly push it into her line over 3-5 minutes)
Noon Vancomycin (given over 2 hours with a pump)
2:00 pm stop the Vancomycin
2:00 pm start Caspofungin (runs for 1 hour with a pump)
3:00 pm stop the Caspofungin
5:30 pm Atarax (pushed over 3-5 minutes)
6:00 pm start Vancomycin in the pump
8:00 pm stop the Vancomycin
11:30 pm Atarax (pushed over 3-5 minutes)
Midnight start Vancomycin in the pump
2:00 am stop the Vancomycin
5:30 am Atarax (pushed over 3-5 minutes)
6:00 am start Vancomycin in the pump
8:00 am stop the Vancomycin
Repeat

I think we have to do the Vancomycin for 2 more days and then things will get easier. We look forward to getting a full night's sleep.



Here is our fridge and our medications
 in the plastic bags on the top two shelves. 
The big tubes of Vancomycin have 60 ml in them.
As you can see, they are humongous. 
The Atarax and Caspofungin are also in the bags in the fridge. 



What are all these medications for?

Here's your answer.

Voriconazole (Vfend) - a preventative medication to stop her from getting a fungal infection.

Septra - a preventative medication to stop her from getting Pneumonia

Vancomycin - Is used to kill the strep bacterial infection that was found in her blood.

Atarax (also known as Hydroxyzine or Vistaril) - Relieves Erin's allergic reaction (Red Man's Syndrome) to the Vancomycin

Caspofungin - used to stop a possibly growing fungal infection.  (Her latest CT Scan showed nodules on her lungs which is a sign of a possible fungal infection.  She has another CT scan scheduled for Sept. 20th)

You survived Medications 101!!  Pat yourself on the back!
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3 comments:

  1. BrianaSeptember 8, 2010 at 12:02 PM

    I found your blog off of Chelsea's blog (Kisses for Cami). Our daughter, Elena, is just about to turn three and has ALL (diagnosed in March) - we go to Primary's, too. I've been browsing through all your posts all morning - I have met lots of families dealing with ALL, but haven't heard much about AML. You guys are dealing with so much - it makes me feel like what we're going through is a piece of cake!

    I smiled and groaned inwardly all at the same time reading this most recent post. The last time Elena left the hospital, we had to do at home antibiotic pushes for 10 days afterward, so I feel for you guys! It's so hard not to get a good nights of sleep and to have your life ruled by dosing medicines.

    I have really enjoyed reading about your experiences and feeling your sweet, strong faith. It inspires me to be better. Your little girl is blessed to have such a wonderful example and teacher in her life.

    The very first post you wrote about "the wise man and the foolish man" resonated with me. I had a similar "scriptural" experience right before Elena was diagnosed. It struck me so hard and stayed in my heart for weeks. After Elena was diagnosed, I realized that it was the Lord preparing me for what was coming. He knows and loves us.

    We have a blog - myhoffmans.blogspot.com - which is private, but if you'd like to look around, I'd be happy to send you an invite. E-mail me at helpthe3percent@gmail.com.

    -Briana

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  2. ChelseaSeptember 9, 2010 at 11:15 PM

    Oh my goodness! Briana is SO right, this makes ALL seem like a cake walk! I am amazed at your strength (and Erins) through all of this. Keep up the good work MaMa!

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  3. Piano MomSeptember 12, 2010 at 1:40 PM

    Briana & Chelsea, it is so great to have others who know what it's like. You both have challenges that are difficult to deal with. I can't imagine having to deal with clinics for 3 years. Both types of Leukemia are challenging. There are so many emotions that come when you find out your child has cancer. I am impressed with your examples and your blogs. Thanks for your comments!

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