Skip to main content

Make a Donation to Defeat DIPG

$
Dedicate this Donation

Honoree Details

Notification Details

255 Characters left

Notification Details

255 Characters left

Select Payment Method
Personal Info

Credit Card Info
This is a secure SSL encrypted payment.

Donation Total: $50.00 One Time

Austin Smith

October 28, 2009 – May 20, 2016

Toward the end of October, we started to notice a difference in Austin’s perfect blue eyes. While not feeling overly alarmed by the seemingly “common” change to his eye (a “crossing” effect) they went forth with a routine surgery (Strabismus Surgery) to correct the problem at the end of December. The ophthalmologist did not seem concerned, and we had been assured it would be a quick procedure that would bring those “baby-blues” back to their perfect state.

Two weeks post-surgery the progress we were hoping to see was not there. As the days continued they began to notice small but concerning changes in his personality, balance, nausea and a “drooping” of the one side of the face. We set up a follow up appointment. After seeing Austin’s pediatrician, orders were sent out for a CT scan and MRI if necessary. The following morning we went in for the CT scan and a tumor on the brainstem was discovered. We were immediately sent to the University of Iowa. Austin had a 9-hour brain surgery to remove roughly 90% of the part of his tumor that was growing outside of his brainstem, a miracle in itself as they are typically inoperable. Following the surgery, Austin made gradual improvements each day, with a growing appetite, speech improvements, and a return to the personality and silly chatter we love.

From the surgery, we knew the official diagnosis of Austin’s cancer: (Stage 4 Glioblastoma DIPG). In February, Austin began radiation and chemotherapy at the University of Iowa (5 days a week for 6 weeks). He has been so brave every day – he has just blown us away. Radiation and Chemotherapy came to an end in the middle of March and since then Britt, Mikinzie and Austin have been spending as much quality time together as possible while also getting back to their normal day-to-day routines.

During the summer, Austin has played t-ball and has had so much fun with it! It has always been a favorite sport of his and we have been happy to see that continue. He has also been swimming a lot, which has been great therapy for him! And any chance we get we like to go camping :)..

In May, Austin started on a trial drug that was recommended for him based on the analysis of his tumor sample. We know it has been effective in adults with other cancers with this similar mutation, but we don’t know if it will work for a brain tumor. After many opinions and research we decided this was the best approach right now. Since we started this we have had to go to the University for weekly appointments and blood work.

We were fortunate in May to be able to stop the steroids for Austin. While they had been helpful in reducing some of the balance problems we had observed, it was so nice to get a break from them and get rid of some of the puffiness it was causing. He just got to a point where he seemed so uncomfortable with the weight gain it caused. That said, since we took him off of the steroid we have seen his balance suffer a bit. It is not bad, but he’s just not quite as confident on his feet.

I can also tell you that as a parent you constantly…I mean constantly…. watch their every move and analyze if that move seemed different from the last one. We know we shouldn’t over think it, but it’s impossible not to. Now, his balance may be a bit off but I can tell you his attitude, his mind, and his heart are stronger than ever. He is constantly amazing us every day in the things he says. He seems wise beyond his years most days.

At the end of June, Austin had an MRI with results that were not what we wanted to hear – but not the worst either. The results showed some swelling, which would be what has affected his balance. They believe this could still be affected by radiation. They want us to keep an eye on his balance and if it would get any worse they would most likely need to put him back on steroids. But right now he does ok without them so that’s good. The tumor itself has changed in shape and is showing a small bit of progression (which made our hearts sink). However, the upside is that Austin’s doctor told us that he can’t tell from the scan if this is true progression or pseudo progression, meaning that it’s not actually tumor growth but affects from the treatment he is on. We are hoping and praying that is all it is. So for now as long as he is doing ok we wait another 2 months and do another scan which should tell us for sure. For now, we will continue the current treatment until the next scan.

We are confident in the strength of our little boy and most importantly in the power of prayer. We ask that you please join us in praying for continued healing for Austin. With God all things are possible! Your support and prayers have meant so much to us!

Update on Austin Strong Website.

Austin did all of this with that infectious smile on his face and faith from above. After a courageous 16 month battle, May 20th, 2016, Austin gained his angel wings and was free of the monster DIPG. The pain of losing a child is impossible to describe and leaves you paralyzed with questions of “why couldn’t we do more?”

After a courageous 16 month battle, May 20th 2016, Austin gained his angel wings and was free of the monster DIPG.  The pain of losing a child is impossible to describe and leaves you paralyzed with 

questions of “why couldn’t we do more.”

After a courageous 16 month battle, May 20th 2016, Austin gained his angel wings and was free of the monster DIPG.  The pain of losing a child is impossible to describe and leaves you paralyzed with 

Learn more about Austin at:  Austin Strong

Submitted by Austin’s parents.