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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Monday, July 8, 2013

Long Needed Update

Wow, I haven't updated this in a very long time and I apologize. I tend to update facebook just because it is much easier to do so. If you want to read Emily's updates or see pictures of her you can go to www.facebook.com/emilysjourney and like the page to follow.

Emily completed both round 5 and 6 of the Avastin/irinotecan/temodar trial.  She had a horrible bout of pink eye during round 5, which took a lot longer to heal and go away, but it finally did.  Round 6 she completely rocked, Dad and I think it had a lot to do with her BFF, Lilly who was by her side almost every day.  Thank you to Lilly's Parents for letting Lilly be by Emily's side.

Emily also turned 6 on May 30 during Round 5 and Diva's and Dudes has been wanting to give Emily a party since she was diagnosed.  We finally were able to have the party there and it was wonderful.  Emily really enjoyed herself along with her friends.  Thank you Diva's and Dudes.

Emily should also be started Extended School Year soon where she will get some time each week to go over things at home,  but come September Emily will be a big first grader.  While she missed the kindergarden graduation and much of the other kindergarden events, she will be a first grader. 

Emily's sister, Jessie. graduated 5th grade with honor roll and presidential award.  We are very proud of her and her accomplishments, so next year she will be going to Middle School.  We are very excited for her, and nervous all at the same time.   Brianna is Brianna, silly girl and loves to sing.   She will be 4 at the end of September.  They grow up so fast.

Also, we want to send out some amazing kudos to a young man that we met back in April, by the name of Navid.   Navid is riding his bike from Harrisonburg, VA to San Diego.  He is currently already in Phoenix, Arizona and we are so proud of him.  He is riding his bike to raise funds and awareness for Pediatric Cancer, in specific for neuroblastoma.   3000 miles, 8 weeks, One Cause.  His foundation is called ProJeKt 3000, and his facebook page is www.facebook.com/ProJekt3k, If you would like to make a donation you can go to www.gofundme.com/projekt3k.  Please make sure you are following him, he deserves some likes.

Now today....we are in Pittsburgh, PA....its our half way stop to Michigan.  We were going to go with the whole family, Jessie was going to go with us this time.  She has never been able to go with us, because she is normally in school, but we had forgotten that she had a prep class this week for Middle School, we will miss her.  So, its the 4 of us again making the trip. Emily has MIBG Injection and Clinic on Wednesday and scans on Thursday at Helen DeVoes Children Hospital and then we meet with Dr Sholler to go over scans.  As always, scanxiety is at an all time high... and we are always hopeful for those 3 wonderful letters, NED.  However, we will be happy with stable and/or decreased disease.   Being that we finished 6 rounds of the current trial that we are on, and that was what we had set out for Emily to do, we are anxious to know what are Emily's next steps, will she continue on the same trial, will she need to do another trial, or what will she need to do.   Anxiety is especially high, being that many of the kids that we read and/or know, are not doing well.  And this is really heartbreaking and really scary to us. Things can change so quickly that it will make your body spin and you fall to the ground, this is something that worries us all the time. 

We also want to send out lots of thanks to so many who are always by our sides, thinking of us, sending us messages, donations and gift cards.  We really appreciate all the love and support and to those that are so wonderful.   And we are so thankful to our wonderful friends, Sue and Jo for always being there for us.  Thank you again to everyone for all that you do, and you all know who you are.

We will continue to update this week to let you know how things are going.  We should be in Michigan by tomorrow evening. Make sure you always hug and kiss your kids and tell them how much you love them.  

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