Such a Big Boy

One of the most difficult things about having a young child with hearing loss is teaching them to advocate for themselves...to get the help they need, when they need it. Last week, Nate told me that his hearing aids needed new batteries when they ran out in the middle of the day. Today, I realized when I dropped him at school that I forgot to put his aids in. I asked if he would be ok without them. He politely told me that he wanted me to go home and get them. I'm so proud of my big boy!

Super Nate to the Rescue

 

We put Nate in a Special Ed preschool program because of his hearing impairment and a few speech articulation issues. After everything he's been through, we just didn't know how he would do in a classroom environment. After a month of preschool, he is doing AWESOME and his teachers feel like he can go to a regular Pre-K class next year (with some speech on the side). We are just so proud of him and all he has overcome in his short life. Super Nate to the rescue!



A Day in the Life

 

Nate had clinic and blood work yesterday. A full morning of treatment follow up tests today. Just another day in the life of a super hero.

The Science of Neuroblastoma

This is a great article for anyone who is interested in the science of neuroblastoma. Nate had MYCN amplification at diagnosis, which is what made him "high risk" and the reason he received such intense treatment. Near the end of the article they talk about promising new treatments targeting the MYCN gene, one of which is DFMO (the phase II trial drug Nate is currently taking). We are so grateful for this opportunity for Nate!

 

http://nbglobe.org/mycn-amplification-in-neuroblastoma/

This Week in Preschool

Icing Smiles

 

Having a sibling with cancer is not easy. Life as you know it, gets flipped upside down. Your family is torn apart, your buddy is missing. Mommy and Daddy are rarely home together and when they are, your sick sibling always has to take priority. You are shuffled from place to place. Weird medical things with strange smells are brought in to your home. Your sibling is showered with gifts and attention. Nate's big brother, Wesley, has experienced all this and more in the last 2 years and has handled it all with maturity and grace. So, when I heard about an organization that arranges special cakes for children with life threatening illnesses and their siblings, I knew I had to apply for one for Wes. Thank you so much to Icing Smiles, Inc. and especially Chef Suzanne of Gourmet Cakes and More for putting a huge smile on Wesley's face with the AMAZING Lego cake for his 7th birthday. It meant so much to us all!



Purple Premiere

 

Face painting, and dancing, and a movie...oh my! Thank you The Purple Society for a great night at the Purple Premiere of Oz the Great and Powerful. We had so much fun!