Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Thursday, July 11, 2013

"Hope is a Waking Dream" - Aristotle

There is one thing that we will always have and that is hope...Hope that one day Emily's body will be rid of cancer, and hope that one day she will be done with treatment and not have to visit the hospital once to twice a week.  That hope is something that we hold onto.  We hold it tightly and continue to hope that one day all of this will be behind us.

Emily's MIBG scan was done and as always Emily rocked the scan.  No problems.  From laying so long and still her shoulder was hurting, but she held still and  completed it.  Emily always rocks the scans and we are so proud of her.  After her scan, we quickly went to get some food from the cafe and we ran into a man who asked "Are you Emily's mom?"  I said, "I am."  We have HOPE magnets on our van that has a picture of Emily in the O of hope and her website... This man went back to his room and looked up Emily's website.  This is what I call amazing and this is how you spread awareness about childhood cancer.  YEA.  Thank you for checking out Emily's page.  After grabbing something to eat, we quickly went back to the Renucci Hospitality House to get everything packed up and in the van so we could be out of there by check out, 11AM.  We are ready to get out of Michigan and get home. 

We ran into many families today, other NB families who are also enduring this fight like we are.  Christopher Grimes, one we have followed for a long time, we met Chris and his dad.  Kristen, his mom, wasn't there, but we are sending many thoughts your way.  Brooke was there with her mom and grandma.  Many kudos to Grandma for staying with Jessica and Brooke for as long as she has so far away from her own husband.  And lots of love to Jessica and Brooke, we always think of you guys!!  Emily enjoyed seeing Brooke and playing wth her today.  Henley Bravebee Romine was with her dad, but we didn't get to meet her.  Dad saw her in the playroom and she was laying on her dad and didn't seem like she was well.  They didn't receive great news today. Henley, we are sending comfort and love your way and hope you are not in any pain and we continue to hope for that miracle.  We also saw Molly Adair again today and we are so happy, she continues to be NED. Go Molly,  you rock girly... There may have been other families there, but we are not sure or we didn't meet them. 

Dr Sholler came in and said "Everything looks good!"  The report actually says: "Impression: Stable CT examination and overall decrease in MIBG avid disease.  No new lesion is identified."   Some of her spots are actually gone and the rest of the them are decreased.  This is amazing news because we have never been this close and some of the spots that have never made any change from the very beginning of diagnosis are almost gone.  This time she also didn't have any spots that have an increase in disease... We are so happy to hear this news, very happy.  Dad and I hugged in the room, we were so happy to hear this news.   So we head home with happiness and know that what treatment regiment we chose for Emily is working and Emily looks great and even feels great.  Emily will go back home and do two more rounds of the Avastin/Irinotecan/Temodor trial.  We hope to go back to Michigan after these two rounds and show even more decrease and HOPE for even better news the next time.  As I said before, "Hope is a Waking Dream".  We will continue to HOPE that one day her body will rid of this horrible disease. 

So we are far from over this fight, but we know that what we are doing is going in the right direction and hopefully that means we are steps closer to where we want her to be. Emily is an amazing fighter, we told her the good news and she is happy too.  All of her spots (12 to be exact) are almost gone and she is happy about that.  This makes it easier for Emily to know why she is doing what she is doing with treatment, food and homeopathic.  

We want to continue to thank all of you who follow Emily and our family and send love, thoughts, gas cards and gifts.  They mean so much to our family as we continue this fight.  Please know we appreciate all that you guys do during this time, Thank you!

Right now we are driving heading toward Pittsburgh to stay with Sue and Jo and we will leave early in the morning to head home.  We are excited to head home because Emily can't wait to see her BFF, Lilly, for the weekend.   

Emily will have clinic next week to start Round 7 of the trial.  Dr Gowda at VCU has already been notified of the great news from Dr. Sholler, and he is happy to hear the news and ready for Emily to start the next round.  

Remember to hug and kiss your kids every night and tell them how much you love them.  

1 comment:

  1. Thank You Father!! I am so happy to hear this news!!

    Continuing to pray for you Emily.