Hi Friends-

Long time, no see 😀. Ava had an MRI today. It's been a year since she started treatment for this latest tumor reoccurrence.  A year with really no improvement to her tumor, a surgery that is hard to tell if it actually helped, 9 months of fighting to get back to where she was at this time last year.   

Today's MRI showed improvement.  Only a few millimeters of improvement, but actual improvement.  Our doctor was very happy. When she first started on this drug, I had read that it could take 6 to 18 months for positive effects to show up.  Yep, Ava was not in the 6 month camp.  But I'm glad it's finally happened.  Hopefully, things will only continue to improve.

The last 9 months:

Ava has continued with PT twice a week until school started, then we moved to once a week.  We just started with a new therapist that will hopefully help Ava strengthen her core, arms and continue the work on her walking.   She continues to have weakness in all these areas, but has made steady improvement over the last year.  Her new therapist does more strength training and she's worked Ava hard the two times we've seen her.  Both me and Ava are happy with this change. 

Eyes: I'd say this is 80% better.  She no longer has a noticeable turning of her eye, but still struggles with double vision and her right eye cannot track completely to the right. This has been so slow to improve but like everything, seems to very slowly continue to improve.

The biggest side effect of the drug Ava is taking is skin issues and hair loss.  These have been very difficult for Ava.  We saw a dermatologist a couple of months ago for some scalp issues that apparently are not a direct side effect of the drug, but an autoimmune issue, which to me is an indirect effect of the drug.  Ava has lost about 50-60% of her hair, which for a 14 year old girl has been very hard.  She started with a lot, so it's not super noticeable to the average person, but it's really noticeable to Ava and causes her lots of anxiety.  Thankfully in the world of 2023, there are lots of options I'm exploring to help boost her confidence in this area.  As winter has set in, the dry, cold air has not been helpful for her continued battles with dry skin.

These would be our prayer requests: continued tumor shrinkage (obviously 😉) for healing of the skin and scalp issues, and for her hair to stop falling out.  Some vain requests, but God cares about those too I'm sure!

We are thankful for all of you who have continued to pray for Ava, even without regular updates.  I am amazed and thankful that you continue to lift us up.  After so many years, God is still faithful to our girl.

Much love

Janell