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.

Thursday, November 4, 2010

More Of The New Strategy

John and Erin got home safely after a long day in Salt Lake City.  The night before they left, John and I made a huge list of all of the things we wanted to discuss with the Doctors and Pharmacists.  I had spent much of the afternoon researching medical articles about AML patients with Cellulitis.

First they visited with Dr. Michelle Bennett, a Pediatric Gynecologist from the UofU Medical Center.  She prescribed Erin a steroid cream Clobetasol Lipoba to be used on her Cellulitis.  I believe the cream is to act as a barrier to protect the skin where the Cellulitis is.  Erin is also supposed to take a little bath and soak her bottom 3 times daily and keep her diaper area dry.  We tried putting her in panties yesterday evening so that she could sort of air out.  She ended up peeing on a chair and was so scared when all that pee came out of her.  We cheered and clapped for her so she wouldn't be scared if it happened again.  We also picked up a little potty from IKEA - $4!  We're not really potty training her yet though because we like her in diapers when we're living at the hospital - it makes a lot of things easier.

After Dr. Bennett's visit they saw Dr. Fluchell, one of our Oncologists at Primary Children's Medical Center.  The CRP (inflammation blood test) showed that the swelling in her Cellulitis is dropped to 1.6.  It was 2.6 just two days previous.  That is a good sign!  Her ANC (fighter white blood cells) flucuates so much and it is down to 1700.  It was 2400 just two days previous. 

We think that maybe her Immune System is out of whack because of what the Chemotherapy is doing to it.  Because, now that her ANC is up in a good range for fighting infection her body somehow isn't recognizing that it has an infection.  I wish there was some way to jump start her Immune System into overdrive on that Cellulitis.

John talked to Dr. Fluchell about one of the medical articles we had found the previous day.  In the article, the girl (who also had Cellulitis on her labia), had an Antibiotic Susceptibility Test done and it was determined that the bacteria in her Cellulitis was resisitent to more than 6 of the medications they were giving her.  We decided that we wanted to have an Antibiotic Susceptibility Test done too, but that requires a biopsy of the Celulitis.  We would really like to find out if these strong antibiotics we are giving her are even doing anything.  The biopsy is a big process though, and it can come with even more complications.  Come Monday, if her Cellulitis hasn't diminished, then we will most likely end up doing a biopsy and the Antibiotic Susceptibility Test.  We're running out of time on the Cellulitis.  The longer it just sits there the more complications that can happen.

In the meantime, Erin had blood drawn for a Virus Test (haven't gotten the results from that yet) in the event that the Cellulitis is stemming from a viral infection.  She was also put on Clindamycin (antibiotic) which she takes orally and it smells like gasoline.  We had the Pharmacist mix it with watermelon flavoring - but it still smells like gasoline.  Erin gives herself all of her oral medications and she is so brave when she takes that one.  She told us that it tastes yucky. 

John and Erin visited a Compound Pharmacist to have him mix the steroid cream.  They mixed the cream with Crisco!  He also visited the Primary Children's Pharmacist and got the Clindamycin there.  Then he went to our Home Health Company and picked up several boxes of IV medications (Vancomycin and Meropenem) that will last us a week.  They are taking over our fridge.  All of her supplies seriously need a room of their own.  I can't wait for this to be over so that I can get rid of every last syringe, tubing, saline, heparin, caps, alcohol wipes, etc.

Monday morning we will have our Home Health Nurse draw labs for a CRP to see if the inflammation has gone down in the Cellulitis.  If is has gone down and the Cellulitis is almost gone then we will admit her on Wednesday (November 10th)  for her last round of chemotherapy.  If things aren't improving, then we will have a biopsy of the Cellulitis done which will help us determine what type of bacteria is lingering and which drugs will be able to fight against it.

1 comment:

  1. We will be fasting and praying for this to resolve so she can get on with the chemo! What an amazing little girl, we are thinking of ya'll every day! I love the picture with the star stickers, so cute! She's an absolute DOLL!

    ReplyDelete