Saturday, November 14, 2015

Chemo time

Taylor "Bug" helping her mom administer her chemo shot.
Kayla- measures, inserts the needle into Bug's thigh, and Bug pushes the plunger.. Administering the medication. She's never cried. She's a very brave little girl.. Kayla is doing a wonderful job: using this time as a learning, healing and growing moment

Administering the chemo 

Measuring the dose

Syringe and chemo vial

Full Unedited Version

Numerous people have asked me to post the full interview with Bug. to allow those outside our family and friends to see how truly remarkable Bug is... She's a very animated, strong, brave little girl, we are so blessed to have her in our lives. Please take the time to watch, see for yourself just a small portion of what makes her so special.

Thursday, November 12, 2015


Bug has her follow up today with her doctor after he raised her chemo. Prayers that it worked, safe travels for her and Kayla. And of coarse for the thousands of other children battling this same disease.

Thursday, November 5, 2015

Introducing The Bug

A little message from Buggy..... See for yourself at what a remarkable little girl she is...

Wednesday, November 4, 2015

Update 11/4/2015

Taylor "Bug" went for her doctor appointment today.... We are happy to report she Was NOT admitted into the hospital. That is an answered prayer, however he did raise her chemo 😞
Three times the amount she was taking, instead of 2 ml she will now be taking 6 ml. In one dose. Effective this Friday! 
In the past the 2 ml gave her migraines and a little nauseous... We aren't sure what this huge dose will do... Nor if it will cause her to lose her hair. 
Please continue to keep her and her mom in your prayers... Kayla is an awesome mom... She is strong, determined and very independent! She has always been a surviver and fighter and Buggy is just like her mom! 
Thank you for taking the time to read and familiarize yourself to this horrific disease... Please help us spread awareness.

Monday, November 2, 2015

Not what we hoped for...

Last IVIG Buggy had, the doctors were optimistic that she was in the beginning stages of Remission, which is the best outcome thus far for any child suffering from JM. They were even starting to wean her off the steroids.

Unfortunately her rash is reappearing, and she's weakening once again. JDM isn't giving up as easliy as we had hoped.... But Bug is a fighter, and she has all her family and numerous strangers praying for her.

Kayla contacted the doctor last week when the rash first started to appear, per the doctors orders she was to move the steroids dosage back up to 8 ml. A week later, Buggy's face is swollen more, and the rash remains.....
Another call to Dr Schikler and he wants to continue with steroids and see her the Wednesday, the nurse instructed Kayla to pack a hospital bag...
They will most likely admit her and start the aggressive treatments of  IV steroids and IVIG.

Below you can see in the photos the difference one week can make.

Right now Buggy insists she go to school,  She is such a Brave,Strong, Little girl.... all the children battling this horrific disease is BRAVE!!!

It's difficult to see the rash in these photos... but it's there, if she's exposed to the sun it brightens and becomes more inflamed. We are keeping sunscreen on her and out of the sun as much as possible.

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