Showing posts with label EMMA STRONG. Show all posts
Showing posts with label EMMA STRONG. Show all posts

Tuesday, July 1, 2014

#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!




 









Friday, July 19, 2013

emmastrong....


  • "WHEN FEAR KNOCKS, LET FAITH OPEN THE DOOR..."

    ....the following was written by Emmas Parents....

    On January 2nd our lives changed forever. 
    Our sweet little Emma was diagnosed
     with a brain tumor at 7 months old. 



    It was devastating. 

    There were many times that we weren’t 
    sure how to go on or what to do next, 



    -----
    but now seven months later we are Emma Strong 
    and have lots to be thankful for.....




    ...look how proud Aiden is of his sister! they just cannot get enough of eachother....

    In the past few months Emma has experienced more
     than we would have ever imagined.
     She has had surgery to remove 85%-90% of the tumor 
    at the Children's Hospital in Boston, 
    surgery to place a shunt and a port,
     and surgery to revise both the port and the shunt.
     She has also started chemotherapy to help slow (and hopefully stop) 
    the growth of the tumor. After completing now 
     20 weeks of her 63 week chemo regime,
     another trip to the Childrens Hospital in Boston this past week
     for a follow up MRI has the doctors tossing her current chemo regimine out.


      Wednesday's MRI, revealed
     what the doctors referred to as measurable growth.
     They estimated the tumor to have grown 5-6 millimeters 
    over the past 2 1/2 months. 
    One thing that the doctors found rare 
    was that the spots on her spine seemed to have shrunk a little, 
    so the chemo was working on those tumors but not in the brain. 
    Interesting, we know. 
    This tells them that the current chemotherapy regimen
     is not doing what we need it to, 
    because of this, the oncology doctors 
    at both Childrens Hospitals in Boston and in Omaha 
    will be talking in the next couple weeks to decide which path we will take. 




    Emma has been able to tolerate the current chemo regimine fairly well,
     she is just more tired and doesn’t eat as well
     the 1-2 days following the treatment.
     Because of the tumor and the surgery,
     Emma’s left side is weaker than her right side,
     which has made learning many skills such as crawling, 
    using both hands to play, and walking more difficult.


     Emma has just finishing a month stay at 
    Madonna Rehabilitation Hospital in Lincoln 
    to work on strengthening her left side, using her left hand more, 
    weight bearing, and walking.
     The stay at Madonna has been very good for her 
    and we have seen many gains in her strength and walking skills. 
    She is now taking steps when given support to help her balance,
     which is a fantastic accomplishment for her.

    -----------
    Although these last few months have been incredibly difficult 
    we have so much to be thankful for. 
    We have been overwhelmed by people’s generosity and support, 
    and have been blessed with amazing friends and family. 
    The support and acts of kindness that people have given to us
     have helped to give us the strength we need to be there for our kids. 
    We have lots to celebrate too.
     Emma is an incredible little girl who amazes us with her strength everyday!
     She turned one-year old at the end of May 
    and we felt so lucky to be able to celebrate this milestone with her 
    and our family and friends. 
    Our Emma is such a happy girl, and takes all of this in stride 
    and usually with a smile on her face. 
    She inspires us with her strength and happy personality. 
    Emma is a fighter. She is truly Emma Strong!











...soooo BIGGG!....

they are growing up so fast!
melts my heart that emma always seems to find aidens hand...

---------

LET THE CAKE SMASH BEGIN....


...when i did her last shoot in feburary, Emma was not wanting to eat a whole lot.....now 7 months later she didnt hesitate to dig right in! she knew all about this cake business!



and such a great share-er she is! i just love the way she looks up to aiden..











..."what's that? i cant hear you i have an ear full of goodness!" 




and in the park....we clean up the cake with baby wipes! 
a whole bag will do the trick...



love how she instantly snuggles right in on grandma...=priceless

and there is no better way to end a super awesome photo shoot 
than with a stop at the ice cream shop!

did i hear somebody say #EMMASTRONG?
 keep the prayers comming for me, 
im a fighter with a personality twice my size, 
and a family who loves me to the moon and back! 
thank you all for your support :)


ALSO....
All future profits generated by sales to Emma Strong will be used to help find a cure for pediatric brain cancers. 
Thank you for all you have done previously because without that support we wouldn’t be in this position, but now it is time to start ordering and donating again. With Team Jack winning the Espy award there is an opportunity to create even more of a movement towards finding cures to these terrible diseases. Wednesday's events made this decision even more important. The oncology doctor said that every single year they are coming out with new treatments and new drugs to be used in the fight against cancer. One of the treatments that we will very likely use next was designed in the past five years here in Boston. It is time to give them more support so they have the tools and staff necessary to win this fight. We have met way to many wonderful kids to let this go on any longer.


you can support the #EMMASTRONG movement by clicking on the link below.



PRAY.PRAY.PRAY.PRAY.PRAY.PRAY.PRAY.PRAY.EVERYDAY.