We (I) Could Learn From Cannon...
Today we did a tour of Helen DeVos Children's Hospital. Let's just say there is no question this hospital is backed by the billionaire DeVos family. The hospital literally feels like the Orlando Science Center. It's overrun with bubbles in the wall and water features and colors. Cannon literally thought he was in a playground! They have a library and playroom that's open all day long. Really just a remarkable place, it wasn't what I was expecting. What a gift to their community! This is the fifth hospital Cannon will have been in.
I could really learn from Cannon....
You spend half your life in a hospital bed and you get into the real world and you... well, you smell the roses.
Example: Today after our two hour stint in the hospital I was rushing to get Cannon to the Children's Museum. Cannon pointed to steps as we walked. The next thirty minutes was spent going up and down steps and giggling as he reached the top and ran to the other side. Cannon and I collect leaves when we go for our walks around College Park, so today when he got to the top of the stairs he was so excited to find these leaves that had pink in them.
Finally I got him back into the stroller and off to the Museum we went. We got there and guess what? It's closed Monday. I'm laughing out loud here! Here I am rushing there and well... not smelling the roses while all Cannon wanted to do was smell the roses, or walk up the steps.
Across from the museum there was a park. Cannon walked through leaves and threw them in the water - he had a blast!!! Then we found a library and we played dress up and building blocks! As I type this he lays aside me in bed napping!
Cannon still isn't talking. He hasn't said mum or dad in a long time. I know he doesn't talk but I have seen so, so, so much progress in him. It tears me up as no mother wants their child different from other kids. Seeing other children Cannon's age at the library talking to their mums and other kids... well I would be a liar if I said it didn't pain me. I'm human, I'm a normal mother and I believe my feelings are pretty normal. But the truth is it doesn't pain Cannon. In fact, he was the happiest kid in the library. No kid smiled and enjoyed life as much as he appeared to. He has been given the gift of smelling the roses, and he does. He really does.
His progress is amazing! He now interacts with kids. That's huge. During treatment Cannon didn't acknowledge other children. Last night as we walked past a baseball field across from the hospital, Cannon pointed. He wanted to go over there (he points at everything now). So over we went. There were some other kids with cancer there playing. Cannon wanted to sit on my knee and giggled as they played baseball. Finally Cannon ran over and got to play with the bat (he wanted the pink one). ;)
Watching Cannon be this way with other kids is a real first for me. It was food for my soul. He may not speak but he is progressing in so many other ways.
Today as we walked around he played with a book I bought him. The book has buttons with all different objects and they say the word with a picture. I would say TRAIN or BALL and Cannon would press that button. These are all huge! He understands me and I'm able to teach him things but still no words. "Well Mum and Dad, I haven't *heard* them in a long time"...
Do not be discouraged - I am not giving up. I continue to try to teach Cannon with everything we see and do, including the cool helicopters and ambulances that we saw last night as we walked around the hospital campus.
One thing I struggle with is his throwing toys. He is getting better but it's a work in progress for sure.
I know everyone wants to know Cannon's schedule for prayers so here it is: Tuesday at 10am we will go to the hospital for Cannon's injection. The injection places nuclear medicine inside his body through his port. If Cannon has neuroblastoma in his body the medicine lights up on a scan. Wednesday at 8:30am Cannon will undergo a MIBG and CT scan and around 11am a bone marrow biopsy, both of which he will be sedated for. Thursday I will sign all the consents and we will start the new chemo in the hospital. It's a pill but they will crush it first and watch for reactions.
Cannon and I will be home for the weekend and then Tuesday we leave for Scotland.
I appreciate prayers for Cannon over these next few days. I promised him as he sleeps aside me that I won't let the cancer come back - it won't beat him!!
I would also like to say Happy 15th Birthday to Talia. Talia passed away in the room across from Cannon during treatment last year after battling neuroblastoma and a secondary cancer she got from the treatment. She battled for 7 years and now has beautiful angel wings in heaven! Cancer didn't beat her - she is pain-free and welcoming other kids into heaven now. I hope my brother James gets to meet her. She was a bright light and her legacy goes on with her mum, dad and family who all do things for pediatric cancer. I pray for her family and for Talia.
Written by Mumma-Bear
Cannonball Kids' cancer
Thankful For The Fight
88 Days No Evidence of Disease
No Relapse Ever