#EMMASTONG

#EMMASTRONG Update:

It is so hard to believe our little Emma is two years old already!





Emma continues to amaze us each day with her strength and happy disposition. There are still days where we struggle to understand why Emma has to endure all of this, but we are so very thankful for her and every day that we get to spend with her. 



Emma has grown and changed so much over the last year.

Last August Emma started her second chemotherapy regimen. Her scans last July showed growth of the brain tumor, so her doctors recommended switching treatments. We were nervous to start a new treatment, but Emma tolerated the Avastin and Irinotecan very well in the beginning. She felt better than she had and was a whole new kid. We loved the happy Emma that we saw while she was on that treatment.


(each of emma's beads on her necklace represent a treatment that she has had)

We continue to travel to Boston for MRI scans, and were happy to receive positive scan results in October and January. Emma’s tumor remained stable, and all of her doctors were happy with her continued growth and development. Unfortunately in March, this chemotherapy regimen caused Emma’s protein count in her urine to become so high, that she could no longer have the treatment on a consistent basis without the risk of permanently damaging her kidneys. 







Emma’s scans in April showed some growth of the tumor, so her doctors recommended switching to a chemotherapy treatment that she could have more consistently.

In May we began her new chemo regimen, which she takes each morning at home. It has been quite a learning process for us, but we are finally settling into a routine with it. Emma struggled with nausea quite a bit initially,





but thankfully after adjusting several of her anti-nausea meds she is doing better now. Emma continues to feel not quite herself in the morning after taking the meds, but usually perks back up by the afternoon, which we are so very thankful for. Emma will continue on this regimen for 1-2 years as long as the tumor stays stable or her body is able to handle the treatment.

Emma continues to have weakness on her left side due to the tumor and surgery, but she has made great gains this year. When she left Madonna Rehabilitation Hospital last summer she could sit independently, but was not yet mobile. Emma has learned to scoot around on her bottom to just about anywhere she wants to go. She has also made great progress in her ability to get up on all fours and crawl a few steps.





We were very excited in February to get Emma her very own walker, which she is doing well with. She can walk for up to 200 feet in it, but continues to work on her ability to steer while she is using it. Emma has also shown great gains in her speech and language development. She understands most of what is said to her, and is talking more and more all of the time. We absolutely love to hear her little voice. She has grown and changed so much over the last year.

Although at times this journey is a hard one, 
we have so much to be thankful for. 


















We continue to be amazed by people’s generosity and support.
 We are so lucky to have such great friends and family. 
We are so very proud of all of Emma’s hard work this year. 
She is the strongest little girl I know. 
She amazes us with her strength everyday! 
Our Emma is such a happy girl, and deals with everything with a smile on her face. 



She inspires us with her strength and happy personality. 
Emma is a fighter. 
She is truly Emma Strong!