Asher

Somehow in the craziness of the fall, I didn’t have time to blog many of my family sessions. I was looking through the other day and saw the Leonard family’s session and knew immediately that I wanted to share their story. I asked Shannon (the pretty mom in these photos) if I could share the photos and Asher’s story and she said yes, so today you are going to meet an amazing boy and family. I have been trying to think about what to say, and honestly I think this post could go on for days with everything I want to say and share, but I’ll try to keep it short.
About a year ago, I was tagged in a post on facebook. I clicked to see who had put my name in the comments of a strangers status, and it led me to the “Tiny Sparrow Foundation” facebook page. They said they needed a photographer in the KC area for a photo session for a little boy with a brain tumor. Someone that I don’t know (and never figured out how they knew me) linked my photography page and when I saw it I volunteered. It truly was God bringing them in to my lives and I’m so thankful, because I don’t think a day goes by where I don’t think about Asher and what he and his family are suffering through.
Shannon posted this today and I thought it was a perfect description: “Having a child with cancer is like taking a speedboat ride at 100mph. It’s fast and furious and out of control most of the time. There’s a lot of wake that rolls behind a boat moving at 100mph and who would blame people from running and jumping out of the childhood cancer wake?” ┬áBut we can’t just jump out of the way and ignore that there are friends and family suffering through all of this. Please read about Asher, pray for him and his family, his mom Shannon and dad, Jake. His older brothers Xavier and Caleb and for little Asher, who has suffered more in the past 18 months than most people do in a lifetime.

This on Asher’s carepage:

Asher was diagnosed with a brain tumor on Friday, October 14, 2011. He had surgery on Tuesday, October 18, 2011 where approximately 90% of the tumor was removed. Pathology revealed that the tumor was a rare, aggressive brain tumor, anaplastic ependymoma. A decision was made to do a second surgery in an attempt to remove as much of the remaining tumor as possible. Surgery took place on Tuesday, October 25, 2011 where an additional 5% of the tumor was removed. We spent a little over 5 weeks in the hospital post surgeries and fighting a case meningitis. We spent Asher’s 3rd birthday at the hospital, but were home just in time to celebrate Thanksgiving with our family! It was a wonderful weekend and we had so much to be thankful for!
Unfortunately, Asher’s first MRI on December 1, 2011, done just as a baseline prior to starting treatment, revealed a number of tumors growing in his spine. We decided we needed to make an aggressive treatment plan and we decided to start Asher on a 6th month course of chemotherapy. He tolerated the chemotherapy very well, remained healthy and full of energy. Asher’s MRI on Friday, February 10, 2012, his first since starting chemotherapy, was not at all what we hoped it would be. The MRI showed that ALL of the tumors were growing and that the chemotherapy was having no effect on the cancer. The scan also revealed that Asher had a large cyst that had formed in the space where the original tumor was removed. There was major concern that Asher would start to become very “sick” very quickly due to increasing intracranial pressure. It was completely heartbreaking and frightening to hear this news.
After many meetings and opinions from well know neuro-oncologists and doctors around the country, the decision was made to start radiation treatment. Asher’s first treatment was on Tuesday, February 28, 2012. He had IMRT at the highest doses possible to the original tumor bed (posterior fossa) for 30 treatments and his spine for 20 total treatments. Post radiation scans completed on April 30, 2012 were a mixed bag of results. Original tumor and 3 noted spinal tumors were FINALLY called stable. However, there appears to be a number of new small spinal tumors and a number of spots of concern on the top of the brain. We’re working under the assumption that these are in fact tumors and that the disease has continued to spread. Asher started a 4 drug “cocktail” on Tuesday, May 1st. These are daily drugs, given from home. We’ll rescan in about 6 weeks and see how things look.

Our first scan since starting the new drug regimen took place on Friday, June 8, 2012. There was some concern that one of the newest tumors had grown slightly, but all other areas were deemed stable! We discussed many, many options and decided the we will give the current drugs one more chance! As we spent many weeks adjusting his drug levels, we decided we dont think we’ve given these drugs enough time to show us their potential. Asher will continue these drugs and scan again on Friday, August 3, 2012.
We hope and pray with everything we have that THIS is the answer we’ve been waiting for and that we will finally see this disease respond to treatment.
We count our blessings everyday and praise God that Asher is still able to do all of the things he loves to do whenever he wants! He remains strong, positive, energetic and sassy!

I know that Asher has had a very rough time since about December, but today Shannon posted that the past two weeks have looked brighter and Asher has actually been smiling again (it had been at least a month since he had smiled, his body is full of extra fluids and weights making it hard to move at all). Please spread the word about Asher and his battle with cancer!