Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Tuesday, July 10, 2012

Is it Friday Yet?

Emily wearing her cap from
Beautiful and Bald Barbie! Let's see if we can get it made

We have scanxiety...and there is no way around getting out of that feeling that comes along with scans to see if the clinical trial that Emily is on is working.

Is it Friday yet? We are ready for Friday because this would mean that we have already flown into Michigan, had the MIBG Injection and had the MIBG/CT fused scan and already talked to Dr. Sholler to know where Emily's scans stand and we would be on our way home back to Virginia.

Emily had a great weekend, although the weather was extremely hot, the girls spent the weekend in the pool at home. We also got to see some fireworks again, which Emily really enjoyed and just being out of the house.

Monday Emily had clinic and her counts were looking good, she didn't need any platelets or blood and her WBC/ANC is up, so based off that information she is ready to start Round 5 of Nirfurtimox Clinical Trial (cumulative chemo round 13 -- WOW) She also handled getting her port accessed again like a princess with hardly no crying and definitely no tears. We are so proud of her.

Round 4 has been one of the weirdest rounds we have had yet. Emily overall did great, she has had energy (besides when her hemoglobin was low) and been playing and having fun. She never reached a point of completely stopping eating like she has the last 3 rounds, and she not once even reached having a temperature, or even fever watching. Thankful, it was nice and Emily right now is at 27.5 lbs, when last round we were at 25 lbs.

Tomorrow we leave for Michigan, again through a wonderful organization, Wings of Mercy, who have been so helpful to us the past few times we have made the trip to Michigan. Early morning, so we can get there and get the car rental, which Northern Air was so grateful to offer a discounted price, and get to the hospital to Emily can have her MIBG Injection. After than we will need to check into the Renucci House and get settled in.Thursday will be another early day of waking the girls up nice and early and get them moving early morning so that when it is time for Emily's scans, they both fall asleep. This has worked the past two times, so we are hopeful this works again.

Scanxiety is high. Our biggest worry (as any cancer parent) is progression. Emily has never been clear (NED - No evidence of disease) and this is one of our biggest hopes is to get the news of NED. HOPE!

We ask that you leave Emily lots of love and HOPE for scans to be better than last time or better yet NED. We also ask that you continue to spread the awareness of Emily and all the other children fighting childhood cancer. We will update more as we have more.


  1. Hi Emily,
    How cool you get to fly!! I am sure you must love being in the air plane flying above the clouds.

    I'm praying for you hon and I promise I won't stop! Praying and praying for NED!!


  2. Let's go NED!!!!!!!!!!! Cannot wait for the GOOD news!