The Lion Fights: History, Truth, and Thankfulness

HISTORY
One year ago toady, we left Doernbecher Children's Hospital after Ari's high dose chemotherapy and stem cell rescue. We left with scary but safe counts. We left and were thankful to be home for Christmas. We left knowing we would have trips back twice a week for blood product transfusions. We left knowing this was his last treatment option apart from trials. But we left, we hoped, and we celebrated life together. We started the long journey of restoration that was and is so desperately needed from such an ugly disease and the life-saving poison his body received.

Ari was playing in the bouncer before heading home for Christmas. We were very excited to get home to Daddy!

TRUTH
The truth is things are still really hard a year later. Every system was wrecked in Ari's little body. Every week we have therapy and doctor appointments to help restore each system in his body. We give him eye drops in his good eye so he can't see out of it for a couple days. His eye is then dilated and sensitive all week. The goal of this is to help his weak eye straighten and carry its share of the "seeing" load. We are still working with molds and fitting of hearing aids. We are trying to determine why he throws up every time hearing aids are put in his ear. We see an ENT in January about this. We are trying to heal his esophagus and control his crazy reflux. We are trying to increase daytime g-tube feeds. We are trying to motivate Ari to play with food. We are not even to the eating part yet. We just want him to explore food. We are trying to teach Ari to play with toys. Ari is working on safely sitting in a chair without straps. Ari is still working on walking. He uses a walker currently, and we are trying to remove his seat saddle so he has less support. It has been hard in a small apartment because he doesn't have much room to maneuver. He is getting orthotics for his feet. Ari is working on body awareness and control so he won't have so many falls. We are working on speaking or communicating through sign language. We are working on social interaction with others. We are trying to help Ari learn to sleep through the night on his own. Overall, he is doing better with sleep but still requires medicine in the evenings.

Trying to balance all of this, his many weekly appointments, and making time for Ari to just be a kid has proven to be quite challenging! Let's call it like it is, cancer sucks. It has made ordinary things very difficult. It has stolen the lives of many of our loved ones. And the fear of it returning to our sweet son is more than we can bare many days. The truth is we cannot bare this alone which brings me to my next point - Thankfulness.

THANKFULNESS
I am thankful I don't have to do this on my own. I am thankful I have a God who wants to take on my burdens and give me rest. I am thankful I have a God who covers me with his Grace and perfect strength. Through God, my weakness is made strong and I don't need to fear. I know that God loves Ari and has plans for him. I know that to be true no matter what our future holds. I know that each day is a gift from God. So even though things are still difficult, I am thankful for each day I am blessed to be Ari's mother. I am so proud watching him work to overcome the many obstacles he already faces. He is a 2 1/2 year old who knows how to work, how to persist, and how to achieve! I believe this will take him places in his life.

I would like to just share a few pieces of progress that I am so thankful for getting to experience with Ari. I am just going to start listing.

Hugs and Kisses - Ari wants to give us hugs and kisses!
Communication - Ari is starting to initiate communication. Whether he is grabbing our hand and showing us what he wants or chasing us around the house with a book he wants to read, he is communicating!
Babble - The beautiful sounds of babble are finally a regular part of Ari's day. Praise Jesus for that sweet voice!
Excitement - Ari is showing excitement and joy when he is having fun. He loves to dance, be tickled, listen to songs & books, and play peek-a-boo.
Movement - Ari is getting stronger and requiring less support with his walking devices. He loves to cruise around stores and the house to explore his environment. It used to be too much for him. He is crawling up the stairs and all over the house. He is showing interest in climbing.
Functional Things - Ari is beginning to consistently help in taking his shirt and pants off and will mimic the inflection in our voice when we "shirt on" or "pants off."

We are grateful for each day with our son. We pray and believe that his little body will be fully restored. We are grateful for each therapist and doctor working on Ari's behalf to help with the healing process. We are thankful for an incredible neurosurgeon who we can never repay for safely removing such difficult tumors. We are thankful for an oncology team that loved and cared for Ari for over a year while he battled AT/RT. Friends and family, thank you for supporting us and being a part of this journey. We appreciate that we never felt like we were doing it alone. We always felt like we had the love of others backing us up.

Thank you for listening to my ramblings and reflections. Now to the good stuff - Pictures! :)