August 27th, 2019 – Scans Tomorrow

The Gehring crew had a great summer and we are settling back into the school routine. We were so thankful for time this summer to relax and getaway to enjoy time together. Emma started 2nd grade a few weeks ago, and is loving it! Summer flew by and now we find ourselves back to school and back to Boston for scans and routine check-ups. It seems hard to believe that three months has gone by, but here it is time to scan again. 

Emma Playing in Boston after a day of appointments

We are feeling a little nervous for scans this time. Emma had minimal growth on her scans in June, but since she had only been on treatment for about 6 weeks at that time it was too soon to determine if the chemo was working or not. Emma has been on treatment now since May, so these scan results will give us information on if this treatment is working or not. We are praying for good news because overall Emma has been handling this treatment pretty well. She takes the pills at home really well, and the biggest side effects we have had are increased fatigue, some low white counts, and more UTI’s. The first two cycles Emma’s white counts were low for a few weeks and we had to hold treatment for 1-2 weeks. After that, Dr. A, reduced her dose and her counts have been good. She has actually gotten more chemo per cycle since reducing the does because she can take it the whole cycle. Since Emma is doing pretty well overall, we are really hoping that this treatment has kept the tumor stable so we can continue with it. 

Emma gave us a scare this weekend. When she woke up on Sunday she could no longer sit up by herself, which is a really big neurological change for her. We took her to the ER in Omaha and they did several tests. They think her shunt is working fine, but they did find a really bad UTI. They said that UTI’s can cause some crazy changes that can appear to neurological. We are hoping this is true, but of course when we see changes like this it makes us very, very nervous. Emma is still having difficulty today with sitting by herself and balance. The good news is that we had an ophthalmology appointment today and they said her visual acuities, pupil reaction and optic nerve all appear to be stable since her last exam, and that there doesn’t appear to be any increased pressure on her optic nerve (which could indicate shunt malfunction). 

Throwback photo to Emma with her friends at Camp CoHoLo

With all of the changes we have seen in Emma the last few days, we are all feeling a little extra anxiety about tomorrow’s scans. If you have time please say a few extra prayers for stable scans, good news, and answers to what is causing these changes tomorrow. We will try and get an update written later tomorrow with the results. Thank you so much for all of your continued prayers and support! Much love from all of us!