Back to life, back to reality…

Our new back brace!We’re back from a great few weeks at summer camp. It was great having the whole family together while we served with over 150 volunteers and 1000 campers! We rolled into town last night and are downtown today for a follow-up MRI.

This is six weeks past her last one and will hopefully tell us that the tumor is shrinking and the spinal lesion isn’t progressing. This chemo is pretty slow acting so we don’t expect to see much. Frankly, we’d be excited to have the results show no movement in either direction. It would be great to hear that the tumor had stopped growing. We may not get results until Monday and we’ll update then.

In other news, we got her brace for scoliosis this past week. She hates it but we are doing our best. She should wear it at least 18 hours a day. We’re not anywhere close to that yet but hopefully we’ll build up to it quickly. They told us the brace should help keep her spine from getting worse but probably won’t do much in the way of correction.

In the coming weeks we have weekly chemo treatments and a few more appointments with various specialists. Then we head to St.Louis a little less than a month from now to meet with the NF1 team there. We’re really looking forward to meeting those doctors and beginning a relationship with their clinic.

As always we appreciate your prayers for our sweet girl!

6 Replies to “Back to life, back to reality…”

  1. Steve, I will be praying for your sweet child. We had a grandchild that battled cancer at 3 years, and he is doing well. Be encouraged!

  2. Praying for your sweet girl (& the rest of the family). I am so sorry that you all are going through this. Thank you for sharing your journey and your BIG faith! You are such an encouragement!
    My daughter also has optic nerve glioma (without NF-1) and has been undergoing treatment for some time now. We also have seen the goodness and favor of God throughout this journey. God is good!
    Keep Up the good fight! God bless you!

    1. Wow. Thanks for commenting Erika! I am so sorry to hear that your family has had to endure so much. How is her treatment going? Is the glioma responding?

      Thanks so much for your encouragement. It means a lot coming from someone who knows the details of the struggle. We’ll pray for your family tonight!


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