Ava’s Story

Site created on April 5, 2012

If you are reading this, you already know what a sweet, wonderful, beautiful little girl Ava is.  She is so precious to us and so many.

On April 5, an MRI showed a tumor growing in Ava's brain.  This was a complete shock to us as her only symptom has been a small limp. 

We figured this would be the easiest way to communicate info about Ava and the process that is just starting with her.


The beginning of 2011, I watched Ava step off the bottom step of our stairs kind of funny.  She fell down and started to cry.  After the tears dried, she got up to go about whatever she was doing, but she walked with a limp.  I figured she had tweeked her foot a little and that it would work it's self out after a little bit.  After a week she was still limping.  I took her to our chiropractor and he found her hamstring was a bit tight.  She seemed to get better after that, but over the course of this past year, the limp never completely went away and eventually became more pronounced.  I brought the issue up with her pediatrician a couple times, we had a couple sets of xrays taken and both times everything looked normal.  

Early in 2012, two chiropractors we know, independently told us they noticed her limp and that we should consider taking her to a pediatric orthopedist.  Our pediatrician had suggested the same thing after the second set of xrays came back not showing anything wrong with her bone growth.  An MRI was suggested.


To be honest, both Jeff and I were skeptical that there was anything wrong with Ava's brain as she has excellent verbal skills, fine motor skills, reasoning, etc.  We felt like it was a hoop we had to jump through, rule out and move on to the next thing.


The results of Ava's MRI on April 5, 2012 were a complete shock to us.  Ava has a tumor at the base of her brain stem.  It encompasses her nerves and a major artery, making it's complete removal impossible.

2012 was the worst year of our lives.  Ava experienced every complication possible to a procedure we were told was routine.  We spent April, May and June 2012 in the U of M children's hospital in Minneapolis.  We came home finally in July only to return to the Duluth hospital for 10 days.  Ava has endured two brain surgeries, developed hydrocephalus, had a shunt placed, feeding tube and trach.  She has had three different ports placed as the first one developed a staph infection.  She has spent months vomiting.

Driving to the cities for our first surgery, I was praying and asking God if Ava would be alright.  I felt like He said yes, she would be alright, but it would be long and hard. So I asked how long... and I felt like he said a year.  It would be a long hard year. 

We had no idea how long and hard of a year it would be.  I'm writing this in June 2013.  Our year mark is up and things are better.  We have watched miracles happen over the past year, literal miracles.  God has healed Ava in so many ways.  She still has hurdles to cross, but everyday she fights.

The Good Lord has said that Ava will overcome and she will be alright.  So she will be.  We pray everyday for that damned tumor to shrivel up and go away, for the medical world to be amazed and for God to be glorified in our lives.

Newest Update

Journal entry by Janell Hirschoff

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

Patients and caregivers love hearing from you; add a comment to show your support.
Help Ava Stay Connected to Family and Friends

Your $25 donation to CaringBridge will help keep this site online for two weeks. And if you donate by March 28, a generous CaringBridge donor will match your donation, dollar for dollar, up to $10,000.

Make your gift in honor of Ava by midnight on March 28 to be counted!

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top