Sophie declined VERY quickly after my last blog-post. So much happened that I couldn’t even keep everyone updated. We had multiple visits to the UVA hospital and daily communication with her neuro-oncology team at Children’s for almost a week- leading up to me just deciding to drive 3 hours to DC and have them look at her themselves. She ended up getting admitted to the neurology floor for overnight care and monitoring. She was discharged the next day with heavy medications to control brain swelling and hopefully prevent a need for a shunt to be surgically placed and to help her with her nighttime and morning headaches that were so extreme that even with round-the-clock tylenol she was clutching her head and crying. Luckily the meds worked well and fast. She’s been doing much better these past 5 days back home in Charlottesville- only 2 vomitting episodes in that time period and no headaches. She is however incredibly irritable and cranky and tired due to the high-dose steroids she’s now on. It’s hard to get a giggle or a smile.

As scary and risky as a brain surgery is, I can’t believe we are actually looking forward to it. Her tumor is simply too large to respond to any treatment and this is the only way she stands a chance. We can’t wait to hear good news that the surgeon has reduced the size enough to make it weak in the face of the next rounds of chemo. We can deal with the surgical consequences as long as we have our baby stay with us as long as possible. She goes in tomorrow at 7:30am. Please start praying for her surgical team and our family now- it feels like the day before a big test or a big race x10 for us and we could use a lot of support! Thank you!!!

I’ll be posting photos from our awesome fundraiser some time today or tomorrow, but wanted to get this blogpost up today in the 24 hours before surgery.


26 thoughts on “Tomorrow…

  1. I will be praying for all involved for Sophie to come through this with flying colors and continue the fight!! Go Sophie Go NEGU Keep battling I wish you love!!!!!!!


  2. I am praying for you all, especially that God would make Sophie strong and her surgical team wise, and that His arms would hold you all as you wait. God bless your beautiful family.


  3. Jenna,

    Sophie and your family are in my thoughts and prayers and I’ll be thinking about you and wishing for the best for her upcoming surgery.

    Keep strong my Friend!

    -Sara Kristof


  4. Hi Jenna, we’re sending all of our love, as always and put out a call for support on our Facebook page. We’re holding you all so close to our hearts. The stress and anxiety, above and beyond seeing you baby in so much pain and so compromised, is so unbearable. We will pray for success, relief, amazing outcomes, and a very speedy recovery. Is there any chance at a full resection? Sending tremendous love, always.


  5. Thinking of you all Jenna….it’s been many years but you are well loved by those you grew up with and we’re all pulling for that beautiful girl, and of course all of you! Big hug and deepest prayers. Erin (Seem) Borlenghi


  6. I think I speak for everyone at GE that we are all praying for Sophie today and sending positive thoughts and energy your way. We also pray for the strength and courage your family needs during such a hard time.


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